Friday, July 25, 2014
Sunday, May 03, 2009 doodle, Community Member, asks

Q: has anyone taken the generic for topamax and it not worked?

I picked up my rx for topamax and they had switched it to the generic.  i started taking it 7 days ago and have had a headache everyday with 3 days being horrible migraines.  Did anyone else out there switch and it not work?  i would love to hear from others and their experience.

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Answers (80)
Nancy Harris Bonk, Community Member
5/ 4/09 12:18pm

Hi doodle,

 

I would think that it should work the same. The difference in generic brand drugs is "fillers" they use, the active ingredients are the same. Is the dose the same as it was before? Are you experiencing any triggers, getting enough sleep, staying hydrated, any wacky weather going on, that may be giving you more Migraines right now? Migraine triggers may be playing a role here too. Of course these are just some thoughts for you. Here is some information on triggers that may help: Migraine Triggers.

 

 

Good luck

Nancy

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leav, Community Member
12/21/10 3:13pm

I too was on Topamax for migraines, and when the generics became avaliable they switched me to them. For all of my migraine meds. Maxalt, Imatrex, and Topamax. I got violently ill each time I took an Imarex so I stopped getting those completely. I fought to get the Maxalt switched back to the named brand and after three months of not being able to move off the couch, eat, take showers, and wanting to basically kill myself. I finally figured out that it was the generic Topamax making me sick and I had to fight with my insurance company for preauthorizaton for a year of brand name Topamax to be covered!! But it is so worth it, I will never put another generic migraine medication into my body again!! I can however take other generic meds. I don't know why, just what happens to my body when I do. I also know that the Topamx helps to keep my daily Migraines away and if it wasn't for the brand name Topamax I wouldn't be alive today, after dealing with daily headaches for over  30 years. Don't let anyone tell you not to listen to what  your body tells you!!

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bdyoung, Community Member
12/27/10 2:39pm

This is exactly what I am battling now.  How did you get the preauthorization from your insurance company?  Did you do it or have your doctor do it?   The constant battle and long phone calls with the insurance company is unbelievable as you well know.

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Nancy, Community Member
2/12/11 10:43pm

I was also on brand name Topamax and I called it my miracle drug. I had migraines for 20 years and nothing helped until I was prescribed this medicine. After two years on it, my pharmacy switched to generic when it  became available.. I noticed a few weeks later that my headaches were becoming more frequent and I had nausea. I have been battling now for almost 2 years....my insurance company will not pay for name brand. I have to pay $1100 for my 3 month supply..making up the difference between their cost for generic and name brand. I am at my wits end. Four appeals later, I am still begging the insurance company to pay for name brand. I am praying for the day that my life will get back to normal.

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Maggie, Community Member
4/29/11 1:18pm

I completely understand this problem! I was on topamax (very successfully) for 5 years.  In 1/2011, my insurance refused to pay for brand name.  I even had proof - to the tune of $6000 in tests (paid BY my insurer) that some inactive ingredient in the generic topamax made me ill.  I had tried generic, and after 6 months of increasingly bizarre MS-like symptoms and severe myalgia (sp?) my doctor ordered 2 brain scans.  Luckily, no MS, but that meant the generic topamax was the culprit.  I got off it, and back on name brand, and in a month all negative symptoms were gone.  Sadly, I cannot afford the $400/month I was going to have to pay.  I recently discovered a Canadian online pharmacy, used by friends, that I am going to check for cost.

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bringbacktopamax, Community Member
9/ 7/11 11:18pm

Did you get to check the cost for the actual brand Topamax?

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Mjcruiser, Community Member
10/16/11 5:05pm
Did you ask the drug company for help? Reply
Fran, Community Member
11/ 4/11 2:09am

I asked the Topomax company for a coupon type card that they used to have when my daughter took it three years ago.  It controlled her migraines wonderfully, but stopped taking it because she thought it was starting to make her hair thin out after several months.  So fast forward a couple of years, migraines terrible, started taking it again, only this time, generic (80 dollar diff. in copay). A week later, hair is falling out all over the place, she gets acne like crazy, depression, etc.  I think its the generic, so called the Topomax company, they wouldnt say if anyone else has complained, but asked a ton of questions, took about a half hour or more before they would switch me to the coupon guy.  Once I finally got transfered to the guy who handles the coupons, he curtly tells me that no, they dont have coupons or anything like them available at this time.  Oh thanks so much!!!!  But yesterday I recieved a letter in the mail from the company asking permission to contact her neurologist and get copies of her medical records for their review.  Ahhhh, well, no thanks again!  They dont want to give me a price break, but theyd like to look at her personal private medical records!  Yeah! So I hate to give them my money, but unless we decide to try another medication, we are going to have to pay the extra $$.  Slight hair loss is tolerable, but the mass quantities with the generic...no.

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Teri Robert, Health Guide
11/ 4/11 2:29am

Hi, Fran,

 

Not to defend the pharma companies, but to just offer a bit of insight here --

 

Once you taliked with someone at the company about side effects, they're required by law to follow up on your call and file a report with the MedWatch division of the FDA. That's why they wanted access to the medical records.

 

As for the coupon, they should have told you up-front that they don't do coupons any longer. Most companies discontinue coupon programs after medications go generic because of the drop in sales that occurs once generics become available.

 

Generic medications are often as effective as the brand names, but there can be problems, and Topamax is one where the generics seem to cause problems for quite a few people. One issue is that the current FDA regulations allow the bioavailability of a generic medication to range from 20% below that of the original brand name medication to 20% above. So, when changing to generic, it might be necessary to adjust the dosage because of the difference in bioavailability. To complicate matters more, if you end up with your prescription filled with the generic from one company, then it's a different company when you fill the prescription again, you can run into that difference all over again. One thing that helps some people is to insist that the pharmacy always fill their prescription with generic topiramate from the same manufacturer.

 

There's more information on possible issues with brand name or generic Topamax in this article, Topamax or Topiramate for Migraine - A Difference?

 

I don't blame you a bit for being upset and frustrated over this, but thought you might like more info.

 

Teri

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Marianne, Community Member
12/31/11 10:29pm

I, too, experienced serious side-effects from generic topirimate in the form of all-over fibromyalgia-like body pain, from the inactive ingredients in topirimate.  I had been taking Topamax for approximately four years for migraines when Topamax went generic in 2009.  At first I handled the transition to generic well, and was taking the topirimate generic manufactured by APOTEX Corporation.  In January 2010, however, the APOTEX generic was pulled from the U.S. market by the F.D.A. due to some manufacturing difficulties. That's when all of my pain problems began. It's when I switched to another topirimate generic that I began have INTENSE fibromyalgia pain.  It took me about three months to figure out that it was the inactive ingredients in the topirimate that was probably causing the pain.  I tried several different versions of topirimate with no success, including ones by Torrent, Mylan, and Teva. (I have one theory that one of the ingredients triggering my pain may have been povidone.) Finally after three months of misery, I went back on the brand name Topamax, even though my health care wouldl not pay for one cent of it. ALL OF MY BODY PAIN WENT AWAY IMMEDIATELY! My hope has always been that that the Apotex generic would return to the U.S. market, but it never has (it is available in Canada -- but U.S. patients cannot purchase it because I have tried.) My husband is losing his job (and our health care) next month and I've decided to try to go off of Topamax completely.  (I take roughly 20 mg in the morning and again at night.)  I cannot fathom taking generic topirimate ever again, unless it's the Apotex. Nor can I afford to buy the brand name Topamax any longer...

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bringbacktopamax, Community Member
9/ 7/11 11:17pm

What insurance carrier do you have?

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Maggie, Community Member
10/17/11 10:27am

I'll answer all the questions I didn't know were posted :) I DID try to get assistance through the parent drug company for TOPOMAX -- no help available in my salary range.  My portion was $390/month.  My insurance company, BCBS, was NO help.  As, I have found, they are no help in almost everything over the past two years.  My exception was denied.  I will, at end of year, be switching (along w/about 200 others) to a different carrier.  Read below for my neurologist's solution to not being able to take generic Topomax, or afford name brand.  One note: Depakote isn't for sissies. It DOES increase your appetite. You have to have alot of restraint (which I don't) or you'll gain weight.

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islandantoinette, Community Member
2/ 6/12 5:38pm

WHAWHAT INSURANCE CARRIER ARE yOU CHANGING TO THAT WILL PAy FOR THE BRAND NAME TOPOMAX PLEASE TELL US ???PLEASE?????????

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southernmama, Community Member
10/ 9/11 9:28am

I went thru the same thing. I called around to every pharmacy in my town and each one, Walgreen's, Walmart, RiteAid, CVS, etc...each one of them carried a topomax generic from mulitples of different places.  Round ones, oval ones, shiny ones..you name it I've tried it. Each one had several differnt side effects and finally found the one that works and does not make me ill.  It's horrible that our health care system has come to this.  It used to be if you wanted a generic you asked for it but now it's just automatically given to us, with our insurance anyways.  If you are taking topomax for headaches I guess they don't see it as a threat but if you are taking it for seizures it's another story..

 

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islandantoinette, Community Member
1/18/12 11:47am

What company generic did you finally get that did not make you ill?

Thank you Antoinette

 

Moderator's Note: For your privacy and security, please do not post personal contact information such as email addresses and phone numbers.

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islandantoinette, Community Member
1/18/12 8:15pm

Aloha Southern Mama:

 

You wrote this post on 10/9/2011 only 3 months ago. I am HOPING you are STILL on the site and can be written!! Please if you get this e mail please write me or call me with the companys brand of Topomax Generic that DID WORK for you and did not make you ill!

YOu say here in your post:

"

I went thru the same thing. I called around to every pharmacy in my town and each one, Walgreen's, Walmart, RiteAid, CVS, etc...each one of them carried a topomax generic from mulitples of different places. Round ones, oval ones, shiny ones..you name it I've tried it. Each one had several differnt side effects and finally found the one that works and does not make me ill. It's horrible that our health care system has come to this. It used to be if you wanted a generic you asked for it but now it's just automatically given to us, with our insurance anyways. If you are taking topomax for headaches I guess they don't see it as a threat but if you are taking it for seizures it's another story..

 

I too have seizures been on Seroquel for over 10 yrs. and I have gained 180 pounds from it!!! I have to get off of it. The Topomax is supposed to be a great one for weight loss. But then I saw one post of a person in here saying her generic she actually gained weight!!

I asked my Dr. and he refuses to give me the physicians authorization to get the Brand Name from my ins. company! He said he has had no complaints about the generic ones. I pointed out this site and told him all about the research I have done and do you know what the IDIOT SAID? "Be careful about what you read on the internet! I told him look these are real people who have taken both the brand name Topomax and the generic and they have valid issures. He still refused. I am so mad! And I am an RN retired and he just does not give a shit!

I am SO upset. As this is MY health and these doctors act like they are Gods and they have power to CONTROL your life and they DO! SADLY!

I am SO upset right now from all this!.

The generic my pharmacy gave me is xy generics.

Please if you get this message, look at your bottle and let me know what company makes the one you said is working good for you so I can ask my Pharmacy to order it OK?

Antoinette Jackson

 

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islandantoinette, Community Member
1/18/12 8:20pm

I just saw the information about not putting your e mail or personal info.

To me this site and this page is SO VERY VERY VERY IMPORTANT.  Please read

my e mail to Southern Mama.  I had no idea there are moderators.  Great!

I REALLY NEED to get some help and advice from many people here and am wondering IF they are still seeing these posts after 3 months? Do you send to their e mail any notification if there is a post for them? It is really important that I find out information from these people as my doctor certainly does not care! Sad to say! And in Hawai'i particularly on the Big Island you can not just "go find" another Dr.  we don't have that many here and NONE that are even taking new patients!

Thank you

Antoinette

 

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Teri Robert, Health Guide
1/18/12 11:33pm

Antoinette,

 

Yes, people do receive an email when responses are posted to them. Additionally, you can click on a person's name above their post, and that takes you to their profile page. On that page, right under their name, you'll find a link that says "Send Message." That will send them a private message, and yes, they'll receive an email notification that they have a new message.

 

The reasons for not posting personal information such as email addressed, home addresses, and phone numbers is to protect your privacy and protect you from spammers and other issues that can arise from having personal information so reading available online.

 

Teri

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islandantoinette, Community Member
1/19/12 12:32am

Aloha Teri:

 

Thank you for responding with this information I appreciate it. 

Antoinette

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JudyS, Community Member
1/25/12 2:58pm

Hello Antoinette,

 

I am reading up on the problems people are having with the generic Topamax, since I have recently experienced issues myself.  I have not actually taken branded Topamax since the very beginning of my treatment for migraine prevention, but was placed on the generic made by Teva, and have done reasonably well.  It was when my insurance company changed and the script was filled with the generic made by ZyGenerics that I realized I was having new symptoms - those of blurred vision and extreme dizziness.  This happened after only about 5 days into taking that brand, and I took it for only 8 days total.  My neurologist suggested I back off on the dosage of that generic a little, but I am was only taking 50 mg daily, 25 mg am and 25 mg pm.  I tried that for a few days, taking 12.5 mg in the am and 25 mg at night, but the symptoms stayed the same.  (As a sidenote, I cannot go over the 50 mg daily, or I become unable to focus, foggy-headed, a real zombie - I guess the classic "dopamax" effects.)  I called 3 pharmacists and discussed the problem, and they all said I may be sensitive to a "filler" in the generic made by ZyGenerics.  I had to call my insurance company, Blue Shield, and talk to a rep there, along with the company pharmacist, who decided that I if I could find a pharmacy that carried the Teva generic of Topamax, there could be an "override" on my script since it was not time for a refill.  Luckily, I did find a local pharmacy selling Teva generic, and I still had to ask my neurologist, the prescriber, to write on the script that I must have the Teva generic only, and that the ZyGenerics caused dizziness and blurred vision.  Quite a lot of hoops to jump through to get the generic changed, and all that after not even asking for the brand name Topamax! 

 

But sadly, my story is not over. as my 28 year old daughter (I am 55, by the way) is also a migraineur and on the generic Topamax.  She had been taking the Teva generic for a few years as well and doing okay on it, with few headaches, on the dose of 12.5 mg am and 25 mg pm.  Well, her generic was switched about a month ago to a one made by Caraco, and she has had severely blurred vision and a round of migraines so severe we thought she would have to be hospitalized.  So we are about to attempt to go through the same process with her insurer to try to specify the Teva brand generic. Not sure how we will make out with her insurance company, but once again we will request the switch back to Teva brand from this same pharmacy, and have the permission so far from her prescribing physician, this time our family doctor. 

 

I am not sure if my stories have helped you, but sure hope you find some relief.  I have been suffering for migraines for many years, and found the combination of generic Topamax - by Teva, and triptans are the best solution for me.  My first choice of triptan, fyi, is MaxAlt-MLT, but that's been denied by my new insurance and now I am using the generic for Imitrex with some degree of success.

 

~ Judy

 

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islandantoinette, Community Member
2/ 6/12 7:47pm

Aloha Judy:


Thank you so much for writing me. I read very carefully each word and I called my pharmacy and they have ordered my next refill on the 18h to be Teva. I saw up on post 12/31/11 Marianne had rouble with Torrent, Mylan, and Teva. But since you did not I am going to order it. I have been using the zygenerics. I drives me nuts when people come on and don't leave really important information about the names of the drugs and the drug companies they know about and insurance companies when they like them WHY THE HECK NOT????????

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Louise, Community Member
8/20/12 11:20am

Topamax has worked for 4 years. However I suddenly developed an allergy to the generic and now am unable to take it all. What happens now I dont know. I was not weaned off the drug. Just stopped apbruptly due to the allergy. I was taking 300mlg per night,. I suffer from clusters and migraines. I have not had a migraine since I started using topamax. But my clusters are severe!!! I tend to get clusters when I pick up something heavy.

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Jennifer, Community Member
4/10/11 3:36pm

I never suffered from headaches until my 30th birthday. I became seriously ill at work on my birthday and had a very severe seizure  and became unconsious. I was rushed to the ER and had MRIs CAT scans and several others ran. The doctors found 2 anurisms in my brain and I haven't quit having headaches sinse. Thank goodness for the name brand topamax! If it wasnt for ths medication I would have died from the seizures and pain!                                                     
                                                                         


                                             GoodLuck

                                             Jennifer                                                              

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islandantoinette, Community Member
2/ 6/12 8:07pm

 

What did you do when you no longer could get the Brand name topomax? Or could not pay for it at the $300 a month? Is the Generic working as well for you? I too have seizures and now have headaches 24/7 from the generic that leave me bedridden!! Because we can't afford the $300 a month thats with ins!!! Is the Generic working as well for you?

 

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vilmarie35, Community Member
8/17/11 8:02am

I was in topomax for a while after the put me on topiramate i started to get every agressive with everyone, anything will set me off. But the worse was the pressure in my head, chest and left side arm pain i got off from it now im getting 4 migaine in a week is realy bad insurrance company do this crap to us with everything we pay them maybe we should all get together and start bugging congress about it to do something about this crap.

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Maggie, Community Member
10/17/11 10:19am

You're right: the difference is "fillers". HOWEVER, I had a horrible reaction to whatever US companies use as fillers, and developed symptoms of MS! I started buying the (supposed) name brand via Canadian pharmacy, and had migraines daily for 24 days.  I was at a loss...insurance wouldn't pay for name brand (US) and nothing else worked.  My neuro put me on Depakote 500mg ER.  No migraine for 7 days then bam! He raised it to 1000mg (rec dose is 500-1000 for migraines) and I've been migraine-free for 2 months.  I'm also pre-menopausal, and my GP and neurologist both think this is playing a role in the "out of control" nature of the migraines.  Good Luck with the meds.

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Nancy Harris Bonk, Community Member
10/19/11 8:52am

I'm sorry you had a bad experience with that medication, but glad to hear you are getting fewer Migraines now. There was just a conversation in the discussion forum, you can find that here http://www.MyMigraineConnection.com, about selecting pharmacies from outside the US.

 

Flucuating hormones can certainly play a role in Migraine. We have some good information on that in these articles and questions: Role of hormones in Mgraines  and Migraine Disease, Menstrual Migraine and Hysterectomy.

 

Take care,

Nancy

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Calla, Community Member
5/ 4/09 9:40pm

Doodle,  I work in a pharmacy and I take topamax.  I switched to the generic when it became available and have noticed no change.  Generally speaking, the active ingredients are the same in name brands and generics, only the inactive ones are different, so unless you happen to have a sensitivity to one of those I shouldn't think you would notice a difference.  I haven't had any of my customers mention a problem yet.  Perhaps there is another situation that happens to be occuring simultaneously.

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adriane, Community Member
7/29/09 11:52pm
I spoke to my doctor today about the possibility that that the generic was causing be problems. She said that it was possible that the All the Doctors had been receiving reports that the amount of the active ingredient could vary slightly from the name brand, but that it should only effect those who were suffering from seizures. She said she would possibly up my dose slightly if I continue to have problems in 3 weeks. Reply
debbie, Community Member
5/23/10 4:44pm

I have been on topamax for 4 years. I was on the topamax (reg.) for 2 years started out on 100 mg. it was harsh they made a mistake when the perscription was writen it was suppose to be 10 mg. thru me for a loop. obviously. I was immediately reduced and on 10 then eventually brought up to 400 mg. a day. I have been in pain for a total of 6 years with migranes that are just unbelievable. the topamax has helped, I do have back and neck probelms (I do hope to have them addressed when they doctors say so). Due to the Cost of Topamax being so expensive I have had to now take the generic. I have now been on the generic for 8 months. Within 3-4 weeks I could tell the difference. I too asked my reg. doctor if there should be a difference he said no. I consulted my nero doctor he said there could be. I guess it depends on who you speak to and what their opinions are. I now take 200 mg of the generic because that is what is suggested that I take. I can tell the difference. I am in hopes of a better solution for my pain. Even through my insurance the cost is so expensive and I have very good insurance.

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debbie, Community Member
5/23/10 4:52pm

As I have read some of the posts below on the cost of the Topamax just to let others know. My Insurance pays for a 3 month supply at a time ONLY they pay $2614.00 my cost is $561.00 this is how good my insurance is. this is what I am talking about. but I still can't afford this. I have to pay for my insurance which comes out of my check $651.00 every two weeks. I pay pay pay. and this is just for the TOPAMAX. There has to be a better way. I am in the same boat as everyone else. the Generic is not working at all for me either. thank you for listening.

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renee, Community Member
8/10/10 11:32pm

WoW, that is expensive!  Gosh, I was on topamax for the last 6 years,  worked great  and only paid $35 a month, decided to go off it for a time to see if headaches would go away, doesn't hurt to give my body a break from the drug right? well They came back.  Went on generic, curious how cheap it would be and rx was $10 per month(i know crazy cheap).....but I noticed the difference, got headaches and tiredness right away.  How long did you take the generic?  That 3 month supply cannot be right, I have seen it online for way cheaper.  I would definitely try online, ask your md if he knows a rep. company. Luckily my insurance is good and I don't have to get on generic, maybe I didn't give it a chance, but if I can get the real deal I am going to. I cannot believe these companies. Insurance and drug companies-good lord its nuts. 

 

 

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Sunny, Community Member
5/21/11 12:17am
I just read your post. I have the EXACT same problem plus TMJD. I'm curious if you are having the same problems w/Topomax as I; confusion, mind fogginess, forgetfulness, inability to organize your mind, takes forever to create a todo list or grocery list, to transcribe that list takes forever, handwriting is affected, dopiness, stupidness, loss of words, loss of grammar, can't spell, the list goes on. Are you finding once you've been on Topomax for awhile and, after you have had to increase it for pain/migraines that it no longer holds? Like for me, each increase is 25mg and I'll have relief for 1mth tops, and I don't know why. My pain is unbearable. Reply
adriane, Community Member
6/ 8/10 10:47am

went back to topamax. This is a different generic brand.  seems to work better.  I was using zy generics this is what I received thru wal-mart.  I have switched to medco pharmacy mail order and the manufacturer is cadila (zydus)

 

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bringbacktopamax, Community Member
9/ 7/11 11:31pm

Can you clarify please. When you say you went back to topamax do you mean the brand? You also said a different generic worked better for you do you mean the one you got from wal-mart worked better or the medco worked better?

I got mine through Wal-Mart & it has ZYD on it and I have had probably every side effect mentioned on this site.  I have asked my Dr. to write a letter to the insurance company but I don't think she will so I will have to find a generic I can live with or live with ha for the rest of my life or start all over with another doc.

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diane, Community Member
9/ 6/12 6:00pm

I to have been taking the ZY generic brand from walmart and have been dizzy, cant,t take thos side effects, time to try something else. Will keep u informed.

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islandantoinette, Community Member
1/18/12 8:27pm

Adrianne was it the zy generics that did NOT work well for you??? Is that the one from Wal Mart? That is what my Pharmacy gave me.  What problems did you have with the zy generics one??? Please get back to me this has me really worried. My Dr. refuses to write the physicians over ride for the Brand name one. 

islandantoinette Please e mail me through here or at hawai.rr.com  with my screen name OK?

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IHAVEMIGRAINES, Community Member
3/26/11 10:15am

Actually the FDA allows a 20% variance of the active drug.  You could be getting 20% more of the active ingredient causing the nausea.

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PJ, Community Member
5/ 8/09 4:08pm

YES I AM HAVING PROBLEMS WITH GENERIC TOPAMAX.  My pharmacy switched me 3 weeks ago and a week later I had 4 migraines in 7 days.  Now I can't get my insurance company to pay for the brand name Topamax!  My doctor has called the insurance company and now I have to go through an appeal process to get them to pay a co-pay of $40 instead of me having to pay $298 for 60 tablets.  I'm sorry you are having the same problem, but glad I am not alone.  Would love to hear from anyone else who is having problems with generic topamax.  It may help us with insurance company appeals.  Thanks

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alichele, Community Member
5/11/09 5:18pm

Thank lord, I finally found someone other people on my side...  I picked up my 90ct script two weeks ago and have a moderate to severe headaches everyday, i have spoken to the pharmacy and my doctor and they have all said that its the same drug and they have had anyone else with bad experiences that they are aware of, I was beginning to think I was just crazy, I have even tried upping my dosage myself, I typically take 75mg every night, but for 3 nights straight I took 100 and still have not seen any change or difference.  Topomax was my little miracle pill, and now Im right back where I started from.....

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Migraine sufferer, Community Member
6/15/09 2:34pm

Hi,  I also am having problems with the generic.  I take 100 mg in the morning and 100 at night and I have been switched to the generic for 2 months now and I have headaches consistantly everyday.  I have to take Excedrin Migraine to supplement daily.  It has not gone into a full blown migraine but they are these dull nagging headaches everyday.  The other thing that I have noticed is that I had extreme weight loss with topamax and I stayed at the same weight for 4 years that I have been taking topamax and since I have been on the generic, I have increased 4 pounds gradually.  I am not convinced that the generic is the same medicine.  I just do not feel the same.  This was a miracle medicine for me for 4 years and I am gradually sliding back to the old migraine world.  I can't seem to get anyone in the medical world to believe what I am saying.  They keep telling me that the only thing that has changed is the fillers.  If that is the case, then why didn't they just reduce the price of the real thing?  Topamax.  Naturally, all insurance companies are only going to pay for the generic.  It is the cheap way. 

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strawberry_34, Community Member
12/27/09 9:52pm

i have had the same problems with generic....with the regular topamax my migraines stayed away and i had a substantial weight loss! and now my migraines are back and so is the weight. i am on the same dose as you...even tried increasing my dose myself and nothing helps....is it the generic that is different?

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PJ, Community Member
5/13/09 3:22pm

Alichele, I am so sorry to hear it is not working for you, but glad it is not just a couple of us.  I am still struggling to get insurance to pay for the brand but they won't.  

Today is a beautiful day and I have a migraine.  Odd, since my trigger is bad weather.  My headache diary (oh yes, I keep one) is totally out of whack since switching to generic topamax.   What do the so-called "experts" have to say about this?  I hope others will share their stories. 

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Maggie, Community Member
10/17/11 10:38am

You're right - others DO need to share their stories.  Someone posted that there "can be as much as 20% difference between name brand and generic".  If that's correct, I'd think the manufactures of NB Topomax would want to see this site! It's ridiculous that all of us have been denied (by insurance) the one medication just because it's NB, when obviously the generic doesn't work for everyone.

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PJ, Community Member
10/17/11 1:00pm

Maggie, thanks for your post.  Since my last post, I have found a great doctor who recognized the difference between generic and brand.  While I was taking 100 mg of brand, he gave me 150 mg of generic and guess what?  IT WORKS!  I was the most skeptical of patients because my headaches were dramatically increased when I switched from brand to generic.  I still get migraines every month but I'm down to about 2 instead of 8-10.  My trigger is the weather which is hard to control, but I can honestly say that the increase in dosage of the generic has leveled the playing field with the brand.  I suggest that people in this situation ask their doctors to do the same.  If it can work for me, it can work for anyone because my headaches are HORRIBLE.  

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wooty, Community Member
5/17/09 9:34pm

I just started generic topamax about 1 week ago.  I have had 2 migraines just this week--one of which was VERY severe--nausea and vomiting--in bed for 12 hours.  Relpax and injectable imitrex did not work as usual.  This is the first severe migraine I have had since titrating up on my topamax almost 2 years ago.  It does make me wonder if the generic form has caused this.  Please let me know if others are experiencing the same problems.  I can get brand name 25$ vs 10$ per month.  They just automatically fill with generic if I don't request. 

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jhona, Community Member
5/29/09 11:17am

Topomax, neurontin, depakote, cafergot, imitrex (bad reaction, had an attack of angina, thought it was a real heart attack) you name it, I've tried it. I have Barometric Pressure migraines, and they are absolutely the hardest to treat, they don't even really know why storms, rain, very high humidity, will cause my brain to swell beyond the confines of my skull, only treatment for that is a cup of very strong cup of hot coffee, instant relief, blood vessels constrict immediately. This is then followed by the worst pain I have ever experienced, worse than post-operative pain, nothing comes near this migraine pain except demerol, 200mgs, and for at least 4-5 hours, I have true relief from pain, but not from the accompying symptoms, vertigo, ear ache, nausea, acid reflux, vision problems, inability to sleep, to name a few.

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Rhonda, Community Member
6/15/09 10:06am

I've been on generic topamax for about a month or two now and have been having a lot of trouble with my headaches. I get a headache after I'm up awhile and then if I take something for it as usual, it might go away, but then return in a couple of hours. This is not normal for me. Usually the medicine will take my pain away and it stays away. But this new pattern has emerged just since I've been on the generic topamax. Not even my Imitrex keeps the pain away. I wouldn't think it would be any different myself, but it's the only thing different in my life that I can put my finger on. I have generic Imitrex also, but I haven't tried that yet. I've also heard that it can be ineffective as well. It might be the manufacturer, I don't know. I'm going back on the brand name Topamax and see what happens with my headaches. I have more headaches in the hot and humid weather anyway, but nothing like this.

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flagirl, Community Member
6/18/09 10:14am

I am so happy to find this site, first of all, and second of all, glad to know I am not alone in having problems with generic topamax!! Finding the right dosage of topamax took quite a while for me but once I did it was like a miracle drug. I has 99% less headaches per month. Then the switch, Its been two months on the generic, and I am hivinng up to 10-12 headaches a month with many of them so severe even my maxalt won't help. My insurance won't pay for brand and I can't afford to pay it myself. I am distraught and don't know what to do. Does anyone have a solution?!

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Teri Robert, Health Guide
6/18/09 11:19am

]-:¦:-•:*'""*:•.-:¦:-•*Hello!*•-:¦:-•:*'''''*:•-:¦:-•*Welcome to the family!*•-:¦:- •:*'""*:•.-:¦:-

 

 

I suggest that you call your insurance company, explain this to them, and ask them if they would pay for the brand name if your doctor sent them a letter of necessity. Unfortunately, some insurance companies just won't pay for brand names once generics are available. For example: There's something about generic Fioricet with codeine that makes it not as effective as the generics. My doctors know that and write my prescription with a "Brand Necessary" note on them. My insurance company pays, but not much; I have to pay the difference between the generic and brand name. So, my insurance company pays $40, and I pay $157. UGH.

 

Still, it's worth asking about a letter from your doctor.

 

Teri

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Migraine sufferer, Community Member
6/22/09 6:13pm

The difference for me was the Generic was free from my insurance company and if I went with the name brand Topamax, it would cost me $700.00.  It is unbelievable what a difference this generic topamax has made.  I have burning headaches from about 1 hour after taking it.  Needless to say,  I can't afford 700.00 dollars per month, so I guess I am stuck with the generic and the insurance company knows that.  It is horrible.....   The most amazing thing is that I had one dose of the real topamax still in my cabinet the other day and I took it and had zero headaches. 

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dialingfordonna, Community Member
7/ 7/09 2:11pm

I am so like you.  I posted on here today.  I've had the exact same problem.  Topamax worked fine.  Got switched recently by pharmacy to generic and suddenly  had a daily return of migraines usually by the end of the workday.  Somedays my Maxalt wouldn't help.  My ins. only paid for 9 Maxalt a month and I had to get a script for more than 9 for the first time ever.  Four extra cost me 97 dollars.  To buy real Topamax 120 25 mg will cost me $341.00 now since my doctor wrote medically necessary on it.  The generic is $7.00.  I almost feel like the med is causing the headaches.  My neurologist said there is a difference and he was so upset about the switch.  I could tell he's had other complaints.  I was glad to find this site because I thought I was losing my grip until I read something about generic Topamax being the cause of headaches.

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JerseyRocky, Community Member
7/29/09 4:51pm

I have the same problem with headaches every night from 3-5 a night, I called my Dr. and am going to make an appointment to see him and go back to brand Topomax, I know it will cost and I am on unemployment, but I cannot go on like this.  You need to report this to the FDA on Medwatch.  I also found another web site that said one of the side effects of the generic topomax was headaches in 23% of the people.  If enough people go to the FDA maybe then they will take the generic off the market.

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sweetie, Community Member
7/31/09 11:41am

 

Oh my gosh, I've had the same problem! It took me a while to figure out what was going on!  Topomax has been a godsend for me.  When I was switched to generic a couple of months ago the headaches started creeping back until it felt like I wasn't taking anything anymore.  I finally realized it all started when they switched me to the generic.  I am going back to the brand regardless of the cost.  I want my life back without the debilitating headaches!!  Luckily my insurance will pick up part of the cost.  Hopefully this will put me back where I was.  I don't care what they say about generic being identical to the brand, obviously it is not when the symptom relief is so vastly different.

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Jamie, Community Member
8/ 5/09 3:35pm

I've had the same problem with the generic brand.  Thought it was just me for the past month.  I've been meaning to google and see if anyone else was having issues but haven't felt good enough too.  I called my doctor today and he said to up my dose from 100mg to 200mg.  Just what I wanted to take more drugs!  Yell I feel like I'm going backwards.  Can't work with a migraine and you have to work to have insurance to pay for the Topamax.  They can say all they want that the generic and brand are identical but how do they know if they aren't the ones taking the generic and having the symptoms.  I wonder how many trials were run on it if any?

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bringbacktopamax, Community Member
9/ 7/11 11:41pm

The generic is not the same!!!! Not even CLOSE!!!!!!!!!!!!!!!!!!

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SKORPIO106, Community Member
6/18/09 2:06pm

I ACTUALLY TAKE 100MG TOPAMAX 3X DAY FOR BIPOLAR - I HAVE BEEN ON THIS MEDICATION FOR YEARS - YES I WOULD CALL THIS MY WONDER DRUG - IT HAS HELPED ME TREMENDOUSLY - RECENTLY WITH THE NEW MEDICAL WORLD OFFERING GENERIC TOPAMAX I HAVE HAD THE SAME EXPERIENCE - GOT MY MEDICINE FILLED AS USUAL GOT HOME OPEN THE BAG AND TO MY SURPRISE IT WAS GENERIC - I THOUGHT NO BIG DEAL AND WAS WILLING TO TRY AND THINK NOTHING OF IT - WELL LITTLE DID I KNOW YES I HAVE NOTICED A DIFFERENCE - I HAVE HAD HEADACHES - EXTREME NAUSEA - AND TIRED MORE THAN EVER - I KEEP PLAYING IN MY HEAD OVER AND OVER THAT IT WAS JUST "IN MY HEAD" - BUT I HAVE HAD NO LIFESTYLE CHANGES AND NO DIFFERENCES IN ANYTHING I HAVE OTHER THAN THIS PARTICULAR MEDICATION - SO RIGHT NOW I AM HAVING AN ISSUE WITH THE INSURANCE COMPANY NOT WANTING TO HELP SAYING NOT APPROVED FOR BRAND - BUT HOPEFULLY WITH A LITTLE HELP FROM MY DOCTOR WE CAN WORK THE KINKS OUT AND GET THIS BACK ON TRACK - BECAUSE YES THIS GENERIC AND BRAND DOES MAKE A DIFFERENCE - AND ANYONE WHO SAYS IT DOESN'T LET THEM TRY IT FOR A WHILE - TRUST ME IF I COULD I WOULD GET OFF MEDICINE ALL TOGETHER BUT IT'S JUST NOT THAT SIMPLE - I AM SICK AND SOMETIMES YOU NEED HELP - WELL HOPE SOME OF THIS HELPED SOMEONE OUT THERE - GOOD LUCK TO ANYONE ELSE WHO IS HAVING TROUBLE AS WELL Undecided

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jnk, Community Member
6/18/09 2:30pm

Yes, there is a difference between the brand and the generic. I have just finished reading an article on generics versus brands where they did a study on them. It seems that they are pushing generics out so fast today that no one is really on top of them and they are finding differences. Personally, I found that the side effects are more exaggerated in the generic Topamax and I also found that I got more nagging, frequent headaches with it. Fortunately I was able to switch back to the brand without too much trouble. Anyone on the generic, I would really try to go back to the brand. It may not matter for the epilepsy, but it seems to make a difference for migraine.

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FDA Rat, Community Member
9/21/09 10:36pm

My wife was on Topamax since the end of 05 for epilepsy and completely seizure free through multiple flu and or cold episodes since 01. Made the switch to generic several months ago. She had a seizure while recovering from the flu last week. I don't believe the generic Topiramate has the same qualities and we will be switching back this week.

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C Hamilton, Community Member
6/21/09 6:26am

I've had migraines for 39 years and have not tried the generic topamax yet but am trying to get it from Canada, since I presently have no insurance.  My point is that even taking Topamax I would still get migraines, not quite as frequent and not so severe.  If I experience triggers it doesn't matter what I take!  I hurt.

 

Good luck, keep trying and God Bless.

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s142s, Community Member
6/23/09 2:33pm

It's been two months now on the generic and I'm calling my doctor today to put me back on the name brand........I'm back to 'square one' - waking up with migraines every day again. I thought maybe it was just me and ran this 'search' to see if anyone else out there was having problems with the generic. I HATE THIS STUFF! All the side affects (spaciness, lack of concentration, tingly fingers) and none of the migraine relief.

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japes, Community Member
7/ 1/09 11:31am

japes

I just switched to generic topamax, and I even did it gradually, by taking one brand and one generic pill together for the first week, " just in case."  I really did not expect there to be a difference, though.  Now two weeks later, I am waking up every day with mild headaches that last all day and also experiencing vertigo.  At first I thought I might just have a 'bug,' but after a week with no change, it suddenly hit me that it may indeed be the generic topamax, because it seems to be a lasting problem.

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StacyS, Community Member
7/ 4/09 12:30pm

I have been also taking the generic topamax for about two months and I wake up every morning with a dull acheing headache. The topamax is supposed to prevent migraines but if this is what it is going to do I may just quit taking it all together and take my chances with the full blown migranes. I havent had but one to two a year since starting the topamax three years ago. This generic stinks!!!!!!!!!!!!!!!

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Joy, Community Member
7/ 4/09 11:39pm

I have been on topamax for over 3 years, and never generic until just the last 30 days. I decided to give it at least a chance. My migraines have not only returned, but pain in my jaws, blurred vision and the side effects that I NEVER had with Topamax, the pins in my feet. I am also now experiencing a notable drop in my potassium levels, I will NOT be made to take a drug, just because the govt says this is more affordable to your insurance company when it effects my health and makes it worse than it was to begin with. This is will not be tolerated as you should not tolerate such as this either. I would advise anyone who is having any symptoms that are out of the contrary to fight against their insurance to make them pay for the Topamax, sighting that your health is a risk factor if you continue to take the NEW generic drug which has btw not been on the market long enough to know what all the side effects of it really are.

 

Good luck and God bless US ALL!

 

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Rhonda in TN, Community Member
7/ 6/09 9:47am

I too have been taking the generic for Topomax for 2 months now and find my migraines have returned.  I have had nagging headaches everyday and now am waking up with the migraines that I thought were history.  The only change has been the generic drug.  I found this website wondering if that could be the problem, not knowing if there was a difference between generics and brand drugs.  I know they are supposed to be chemically the same but the effectively, there's a difference. 

 

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dialingfordonna, Community Member
7/ 7/09 1:56pm

I have been taking the generic for a month or so not thinking that might be the cause of my daily migraines until I read your post.  I had an appt. with my Neurologist and told him about the return of my headaches and insurance not covering Topamax anymore and only 9 Maxalt which I only used to need that many.  This had been the first two months I needed more Maxalt because the Topamax wasn't working. My doctor got so upset but wrote out my prescription for medically necessary Topamax this time.  My pharmacy will fill it, but for a cost of $341.00 for 120 25mg. pills compared to $7.00 for the generic.  I'm going to have to search around for lower prices. My pharmacy was covering the Topamax until it suddenly started substituting the generic without my knowledge.  I definitely feel there is a difference in the two medications because I have been affected by the switch without knowing what it was. 

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Gram, Community Member
7/ 8/09 11:00am

For a year and a half I have been successfully taking topamax for migraines. It has been a miracle for me. About two months ago when I got my prescription refilled it was switched to a generic because of my insurance coverage. Since then I have noticed a difference and I am back to my excruciating migraines that I had been virtually free of for the year and a half. I am devastated!

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StacyS, Community Member
7/21/09 2:09pm

YES!!!!! I too had probs with the generic. My Doc fought with my insurance and after two months they paid for the brand name Topomax. EVERYONE who is having probs need to email the FDA. I DID they give you a link to report your problems and dsymptoms. They need enough complaints to begin an investigation. My pharmasist says that some generics can be off by a certain percent from the brand and many people are sensitive to this. I believe this med was pushed onto the market too soon and we are suffering for it. BOMBARD the FDA with all your complaints about this med!!!!!!!!!!!

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islandantoinette, Community Member
1/18/12 12:15pm

How do u E mail he  FDA???

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Feedback, Community Member
7/22/09 2:31pm

I have had problems too.  It has been getting steadily worse as the brand got out of my system and the generic got into my system. 

 

I feel like I feel when I am off my meds, almost like I am not even taking Topamax. 

 

I called my pharmacy today and they said they would fax my Dr. and take care of it. 

 

 

 

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Linda, Community Member
7/22/09 8:21pm

I had terrible problems with the generic and ended up in the emergency room. Didn't associate my problems at first with the switch to the generic. It took a few days. My headaches came back and I was dizzy and diagnosed with labrythinitis (sp). Finally went on the internet and found others were having problems. Paid out of pocket for name brand and all problems went away.

 

Filed problems with the FDA under medwatch and suggest everyone does. This can help call for an investigation. The generic forms are not the same. Not bioequivalent. Probably they are absorbed differently.

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JerseyRocky, Community Member
7/31/09 9:46am

I too had my Dr. switch me back to brand topomax.  I took the first dose last night. Also reported my side effects to FDA medwatch.  My questions is how quickly did it take for you to see any change in the swich back to brand.  I had my like clock word headaches again last night 1am, 3am, 5am, 7am.  The pain is immense.  I do not want to keep taking Relpac on a daily basis not that I could since another insurance issue, they not pay for 6 tablets a month, so I have managed to sand bag some from the prior Topomax period when I was headache free.  My frustration and pain is worse that before.  Thanks for this website or I would not have connected what was causing the headaches.

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Linda, Community Member
8/ 4/09 11:26am

After about 2 days I was back to normal. 

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Linda, Community Member
8/ 4/09 11:26am

After about 2 days I was back to normal. 

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Niffiner, Community Member
7/27/09 1:27am

I take Topamax for epilepsy and my pharmacy switched me to generic by default when it became available; within a month I was having auras, weeks after that, full-on seizures.  I went to my neurologist and she specified to my pharmacist that he was to give me the brand name of Topamax, not the generic (which costs me $35 as opposed to the $10 for generic) which I am more than happy to pay...fortunately I have heard no complaints from my insurance company...the bloody prescription runs retail at $1300.00 a month! (my epilepsy requires 500mg a day to control).  It's been a couple weeks now and things are thankfully back to normal.  This is what worries me about this new healthcare bill; do you think the government is going to let us choose Topamax over Topiramate to control our seizures/migraines?  Do you think they're going to go with less costly or more effective?

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Judy, Community Member
8/28/09 10:59pm

That is EXACTLY what the healthcare bill will do! It will keep the insurance companies from doing this to us! The insurance companies are taking our payments and giving us the cheapest care possible. The healthcare bill will make them accountable for OUTCOMES.

 

This should not be allowed to happen to those of us who thought we had found a "cure" for our migraines only to be put back in worse shape than before - and have to find out about it on a website. I am calling my doctor tomorrow to be switched back, going to the FDA website, and telling my Representatives to vote for the healthcare bill!

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FDA Rat, Community Member
9/21/09 10:58pm

Will the healthcare bill ALLOW your doctor to switch you back tomorrow?

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military wife, Community Member
1/ 6/10 6:04pm

no silly the Healthcare Bill will tell US what to take.  Will tell US GENERIC is all you can take.

 

My husband is in the Military and I was told today after four years on Topomax that I could NOT be on it (only Generic) even if I have always been BRAND NAME only.  Doesn't matter that I might have a seizure and suddently after three days and my last appeal I am denied and without meds and I am at a loss.

 

THIS IS MANAGED care at its finest.  Them telling us what we WILL take OR we have to pay for it.  Think about it.  They will tell us what we will take.  The cheapest way will be the way in managed care.  DUH!

 

Now another written appeal and thank GOD the military base had some 200 pills for me to have for a couple of months. 

 

This medicine has been wonderful and YES the generic does have issues.  :( 

 

 

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thekorbells, Community Member
7/31/13 1:11pm

I'm still waiting for Topamax brand to drop under $975, and that includes Express-Scripts 25% discount. I've gone through months of exhaustive conversations with my insurance provider & the appeal board and they refuse to offer brand at a reasonable price. My doctor has submitted documentation stating why I need it vs a generic and yet I'm still paying a premium. To prove it out I also completed the generic first step therapy to see if it would work for me and I did not respond well to the medication like many on this thread (tingly arms/face, migraines & the occassional seizure - NONE of which occurred with brand). It doesn't take a Mensa member to realize any neurological drug made by 17 different manufacturers is likely to have some drawbacks for the end user. Being that you said the healthcare bill will help scenarios like ours I was curious if you've discovered what steps I can take to get the brand medicine my doctor insists I need at an affordable price. Would appreciate any insight you have into navigating my issue, thanks!

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thekorbells, Community Member
7/31/13 1:14pm

Hi there,

I'm still waiting for Topamax brand to drop under $975, and that includes Express-Scripts 25% discount. I've gone through months of exhaustive conversations with my insurance provider & the appeal board and they refuse to offer brand at a reasonable price. My doctor has submitted documentation stating why I need it vs a generic and yet I'm still paying a premium. To prove it out I also completed the generic first step therapy to see if it would work for me and I did not respond well to the medication like many on this thread (tingly arms/face, migraines & the occassional seizure - NONE of which occurred with brand). It doesn't take a Mensa member to realize any neurological drug made by 17 different manufacturers is likely to have some drawbacks for the end user. Being that you said the healthcare bill will help scenarios like ours I was curious if you've discovered what steps I can take to get the brand medicine my doctor insists I need at an affordable price. Would appreciate any insight you have into navigating my issue, thanks!

 

B & T

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MomOf3, Community Member
7/29/09 1:47am

I have made the switch about 3 months ago and have had headaches ever since!  I wake up okay and within 45 minutes I have a headache that will linger all day!  I have pain meds that I have prescribed to treat them but I have to take them so frequently I feel like I depend on them!  That is bad!  I feel like the doctors think I am a junky calling for more meds because I simply cannot take the pain!  I have 3 children at home that run and play LOUDLY and that doesn't help much either but do they care?  NO!  I just wish my headaches would go away for good!  I have had daily headaches for 5 years now after having meningitis!  I finaly have found relief with Topamax for about a year until "THE SWITCH"!  I am so angry because who are you?  The doctors think you are crazy!  Anyways, Just add me to the list of people who knows there is a difference! 

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w158jlm, Community Member
7/29/09 3:05pm

I have been taking Topamax for 7 years for Bipolar Disorder.  I had tried about 8 different drugs before trying Topamax.  Finally I had found a drug that worked for me.  It has continued to work for me for the past 7 yrs until a couple of months ago.  I gained about 5 pounds over the past 2 months, I cannot sleep or concentrate, etc. I had just attributed it to stress until I began reading on the internet about how others who had switched to the generic are experiencing changes in the effectiveness of the drug too.  I submitted a report to the FDA via MedWatch.

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JerseyRocky, Community Member
7/29/09 11:29pm

Yes, I had my insurance carrier call my Dr. and have him switch me to the generic without my consent, I have had headaches with in 7 days after the switch.  I have almost fainted countless times.  The headaches are worse and they had been under control, now I am back to 4-6 a night.  I am trying to reach my Dr. since we have moved I now have a new Dr. to have him switch me back to brand.  I have sent a complaint to the FDA medwatch website about my problems and they did get right back to me.  I suggest that every one let them know about their problems.  On the web site Patient Assistance under the generic of Topomax, it states to seek immediate medical attention if you have headache or dizziness. So that is what I am doing and going to have him put me back on the brand.  Research the internet, you will be amazed.  Let me know.  Thanks, and good luck.

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luvmycodydog, Community Member
8/ 5/09 6:33am

I and a friend have noticed the same problem.  Have started back with my same cycle of waking with 2-3 a week or everyday of it's a particularly rainy week which this summer in OH it has been.  Talked to my MD and asked him to write my scrip for no generic and am paying out of pocket $116/month for 60 tabs.  Get a little break from insurance, it would otherwise cost $298.  I just can't keep waking with these, taking my imitrex, and then throwing up so I can go to work.  The name brand Topamax was working great for me.  Perhaps if word gets out that enough of us are having the same issues the insurance companies might change their payment policies regarding the generic like they do for seizure patients?

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Stressed, Community Member
9/ 7/09 10:43pm

I am SO glad to find this site! I've been taking TOPAMAX for several years, found it very successfully controlled my migraines. The last two years I've only needed "acute meds" once each year -- even then, the headaches were not that severe.

My "prescription by mail" pharmacy switched me to generic topamax (much to my shock) five weeks ago. I began taking the new pills about a month ago. The last four days I've had the worst headaches I've experienced in over two years. This DESPITE the fact that I've experienced NONE of my known triggers (and I've kept track of my triggers since 1983), and that I had gone through a much more stressful period last spring with NO migraines at all!

Cause and effect is pointing strongly to SOMETHING wrong with those generic pills. It seems to me that this situation merits investigation. Is anyone checking?

 

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JTL22002, Community Member
9/15/09 12:44am

I could cry......I thought I was the only one!  The exact same thing has been happening to me!  In face I am going to print this out and take it to my Dr. tomorrow!  I can't get my insurance to pay for the name brand and I have been on generic for a couple months and have been miserable!  Headaces almost everyday....just like before I got on my magic pill of brand topamax!  Then a year later they took it away from me!  I cried!  I have a headache going on as I type this......I know what is coming. :-(

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RowlettTx, Community Member
9/17/09 2:52pm

I have some of the Topamax...I know what it is like to have a migraine that is not stopping. My doctor has not yet discovered what works for me. I have some Topamax - does not work for me - which I can send to you if you still need them.

 

AMJ - Rowlett TX

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StevenL, Community Member
9/23/09 2:26pm

I just recently changed neurologists and went in for my first visit a few days ago due to me being out of work 80% of the past 2 months from migraines.  I asked him about the new generic Topamax and if infact generics are equal (I have never gotten a doctor to admit generics are inferior).  He said flat out that alot of generics are inferior (not all, but quite alot - Wellbutrin XL comes to mind!) , and if I could manage to get my insurance to pay for brand name Topamax I should.  He offered to write a letter.

 

My insurance won't cover an inch of the brand name cost and the last time I checked I believe it was priced at $197 for 60ct.  If I can manage to fit it into my budget and keep my job I'll let everyone know if it works out!

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alicotebrad, Community Member
9/29/09 8:03pm

Yes- terrible migraines for 2 months ever since switching to generic. I was on Topamax 100mg once a day for yrs. I have increased to 200mg of generic and it is like I am not on anything I had to go to urgent care today. This is terrible!

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speak up, Community Member
10/21/09 11:38am

Same for me as I'm reading over and over here.  I've been on brand topomax for past 7 years for migraines.  It's been a miracle drug.  My last 2 refills, they mailed me the generic (informing me in small print on the order form).  Couldn't understand why suddenly it was like I'd stopped taking the topomax...I was waking up with the pain at the base of my skull where my migraines always began, and feeling sick to my stomach and every day the migraines got worse.  I lost my job in February and have COBRA coverage and in checking when I could refill my prescription before my health care runs out, I happened to notice the past 2 refills were with the generic "topiramate", which coinsided with when after 7 years my migraines returned.   The generic under my plan is $20 for 90 days, the brand is $200 for 90 days.  Sure hope they remove this generic that not only doesn't work, but at least in my case seems to cause migraines and make them worse, so we can again afford the brand topomax.  Where is health care reform!?!?!   Those of you who aren't on board, supporting Obama to get it passed asap, you ought to be ashamed of yourselves.  All those legislators that are opposing the public option, every one of them have government health care....each and every one of them have it and use it, even though they can use private insurers if they wish.....but they don't want a public option for YOU.  They are greedy selfish folk paying homage to the insurance companies....they don't care about you.....when was the last time a republican did anything for YOU?, made YOUR life any better, any easier?  

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inpain, Community Member
11/ 1/09 10:32pm

I take it for headaches and neuropathy, in my thigh, and it does not work, especially for the neuropathy. I am taking 300 mg instead of my usual 250, with no relief. This is a disgrace.

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willitstop?, Community Member
11/ 2/09 2:25pm

My insurance company forced me to switch to the generic and I have also begun to have debilitating migraines again.  Unfortunately, to switch back to the brand name Topamax, and live a normal life again, it will now cost $203 per month, instead of the $50 per month I was paying.  Just how am I supposed to afford this?

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kc, Community Member
11/ 6/09 2:44pm

I can't believe so many people have the same problem.  I started taking generic topamax 2 months ago and my headaches "came back" also.  Recently I have also been feeling exremely tired and fuzzy headed.  I have had migraines since I was 3 and this medicine was the first time something had actually done something about it.  Now it seems they are an enemy too.  I can't afford the real stuff, no insurance, self employed (2 employees auto repair shop).  I feel like no one cares for Americans who work hard and try do to whats right.  I hope for everyones sake on this website someone shuts down the producers of such "fake" products. 

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kristeana, Community Member
12/11/09 12:18pm

hows everyone doing with this? I wondered if it was just b/c of the switch from topamax to generic or if its just less effective. Ive only seen 100% negative expereince with it as far as online research, but then again those were all when people first started taking it.

anyone on it for a while and its working nicely?

im beginning it for migraine and weight loss but i have no option for the brand name, so if the generic sucks this much i might just stop before i start

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CBear17, Community Member
12/18/09 3:06am

I was switched to the generic topamax and noticed within a week it was not working.  I am in my third month on the generic, still fighting with the insurance company, suffering constant migraines again.  I also feel I am back where I started -- It took me almost a year to get the correct balance of diet and pills to keep my menopausal migraine monsters under control, and now I am Alice falling down that hole again.  Why do the insurance companies think they know more than the patients and the doctors?  The added stress is only making things worse.  I HATE MIGRAINES.  I want my Topomax back!!!

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mcmurraychick, Community Member
1/ 6/10 8:02am

yes! and my insurance company doens't believe me! thankfully my docotr did. so they upped the dose of amatriptyline. and that helped.

 

good luck!

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scout123, Community Member
1/11/10 11:07pm

I switched to the generic for topamax about three months ago. I take it as a "kicker" with Lexapro for depression. I thought it was all in my mind that my depression was getting worse because everyone told me that the generic was just as effective as the brand name but now I feel like I'm not taking any anti-depressants at all! I feel worse than I have in a long time. Why should all of us feel so bad just because we were switched to a generic and why are we all so misinformed? I am going back to the name brand as soon as I can, but I too will probably have to fight the insurance company.

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kitlove, Community Member
3/ 2/10 9:43am

I have been taking the brand name for over a year with great success and I have notice a HUGE difference in migraines when I switched to the generic. I know that I have a problem with binders in other pills, but I have never had a generic just NOT work like this.

 

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Nuts2, Community Member
3/ 4/10 2:52pm

I have been on the non generic Topamax for years to control my headaches. It saved my sanity. A few months ago the insurance company switched me to the generic. Within weeks I was back to almost daily headaches. I have been able to up my dose of the generic but I have one of the lesser known side effects of paresthesias and although it is not medically threatening, driving and suddenly not feeling my hands is almost as bad as the sudden onset of partial blindness from the head ache. I have a doctor’s appointment in the morning. There are 17 companies that produce the generic. Has anyone tested the different brands of the generic to see if one works better?

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coffee fan, Community Member
4/21/10 10:56am

I would encourage all of you to contact the FDA and report your problems under the MEDwatch site for adverse reaction. The reporting process is on-line and fairly simple.

I ended up hospitalized after switching to the generic topirimate from topamax for treatment of migranes. Clearly it is not the same medication.

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Topa, Community Member
3/ 6/10 5:15pm
I experienced exactly the same thing! I have been taking Topamax for a year now and it had been working just fine. Last week the pharmacy switched my topamax refill from APO to MYL and I didn't know until I got home. I started taking it like I've been doing and I had two severe migraines in one day and once the day after with vomiting and aura! This had never happened to me before (I usually get severe ones every 3 months or so) and now I had my doctor take me off the MYL topamax and waiting for the pharmacy to refill APO. All in all, I feel much better. You should have a doctor write prescription specifying APO. Reply
MJ212, Community Member
4/16/10 2:41pm

My pharmacy switched me from Apotex to Mylan and my abdomen became bloated, migraines persist, severe acid reflux!!!  Excruciating.  I asked the pharmacy to get the Apotex back and they said they have no control.  I was told "It's whatever the warehouse sends".  This is despicable!!!  Would you let someone make you buy a car that you didn't want because "that's what the warehouse sent"? 

 

I haven't really had a good experience on any of the generics.  I was forced to go back on the name-brand to the tune of $600/mo.  Whatever the fillers or inert ingredients are, in the generics, should be disclosed.  Obviously many people are not doing well with them. 

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Rozzie, Community Member
3/25/10 10:48am

Yes, and the insurance does not care.  I have gotten letters stating this form several doctors and the insurance said that it is a matter of money on my part they want $600.00 for 3 packs-which is reduced by insurace but not a co-pay amount.  The generic does not work and makes me get sick to my stomach.

 

 

 

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Tand T, Community Member
3/26/10 1:00pm

I have had migraines since I was a child.  Topamax was the first thing that allowed me to live a normal life.  When the generic was first available, I was switched to that and within days noticed I had "my" headache back and thought I was forgetting to take the topamax.  But after making sure I took it, I called my neurologist and he wrote a letter for the brand name and I was able to go back to them.  The headaches went away again.  Now, I have had to change insurances and they will not cover the brand name.  My Dr. says there are different companies that make the pills and maybe the formula in one will work better for me.  My pharmacy can order from 7 companies.  So far I am on the 3rd one with a daily headache.  Problem is it takes a month to go through each company.  I am trying to find out if Ortho-McNeil-Janssen makes any since they make the real Topamax.  My Dr. also said the generics can vary in strength by 20%.

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dribbs, Community Member
4/15/10 12:38pm

I have been on Topamax for about two years (with a break in the middle).  It worked great and then was switched to the generic.  Like others have said, I got an "off the charts" migraine.  Ever since, it is like I am taking nothing or just sugar pills.  I went from having almost no headaches to having a headache almost every day.  I have one as I write this.  I tried to get them to switch me back, but my insurance wants about $200 per month, which I just won't pay.  So I think I am just going to go off of the "fake" Topamax.  I used to think generic's were the same, but I guess they are not always the same.  It's very frustrating.

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akb, Community Member
4/19/10 1:40pm

yes, some of the generic do not work At ALL.  When I picked up a refill for a generic from a different company I suddenly started having horrifying migraines again.  I could not figure out what was wrong.  The only difference was the change in the topirimate.  Conincidence?  NO!  I asked my pharmacist to order a different brand and bingo! no more migraines. 

WHY DOES THE FDA SAY THAT GENERICS ARE EQUAL TO THE BRAND? 

 

DOES ANYONE WONDER WHY IF GENERICS ARE EQUIVALENT THEN WHY DO THEY CONTINUE TO MANUFACTURE THE BRAND NAME DRUG FOR THE SAME RIDICULOUS PRICE IT STARTED AT WHEN THE GENERIC IS AVAILABLE?

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Annette, Community Member
5/13/10 12:04pm

Yes I couldn't pay for my perscription so the pharmacy switched it to the generic. I took it for a month and had headaches everyday some very severe I called my doctor he rewrote my perscription for brand only. The headache's went away. The generic isn't any good.

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Cleo, Community Member
5/24/10 10:56pm

I too am on the generic and it is NOT working.  Health insurer and pharmacy say it is the same but there IS a difference.  They just do not get it.  To a person with migraines the slightest difference can give you a migtaine.  My insurance also offerred to pay part.  That will only cost me $483 a month for the Topamax.  I can't afford it.  The generic is not stopping all the pain but is stopping some.  The worse is the side effects.  I only had minor ones before.  A few tingles in my hadns and arms and the occassional warm flush in my cheeks.  Since being on the genric my vision has been blurring, my memory is not as sharp, I am not as focused, and I am getting regular headaches in addition to the migraines.

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Officenurse, Community Member
5/29/10 2:30am

The first generic I was given by the manufacturer Glenmark worked perfectly. The second one I received from my mail in pharmacy is made by another mfr. The pills are blank are one side and have ZD with the number 16 under those letters on the other side. These do not work. I have migraines and my appetite is out of control. I have never taken the brand name Topamax so I don't know if it works even better than the one by Glenmark but I am quite satisfied with Glenmark.  Some generics do not work even if they have the same amount of active medication. The reason may be the quality or quantity of the medication may be different or the ingredients they are mixed with do not compliment their activity in the body. How well do you think Alka Seltzer would work if it wasnt mixed with a glass of water before ingesting but chewed and swallowed on an empty stomach. The active ingredient would still be the same. But I can tell you, it would not work well, if at all. Dont let anyone tell you it's just you. This is one of the reasons insurance companies still have to pay for brand name medications vs generic if your doctor puts that on the prescription.  Good luck

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debcran777, Community Member
6/ 1/10 7:23am

Hi- I took Topamax about 6 years ago for Migraines-was on it for about 3 years with great succes until my insurance company decided it was non- formulary or whatever and started charging me $40 instead of $20 for it, so I switched to something else on principle.  Just recentle, a new doctor switched me back to Topamax, and to my surprise I found it was generic when I picked it up.  That was probably 2 months ago, and  today, I am going back to her to see if she will take me off it.  I am not having headaches like so many of you.  I am experiencing approximately 21 side effects from the generic, and most of them are bad- a few of them VERY BAD!  I have lost 22 lbs, which is nice but it's because most things on the planet taste bad to me.  I eat in one day what I used to eat in one meal.  I have a raging thirst which cannot be quenched by much of anything.  I have only  found about 2 things i can drink other than milk & milkshakes.  I cannot drink anything at all carbonated.  They call it "Taste Perversion"  .  Isn't that special????   Basically it means pretty much everything tastes like crap.  I haven't had a cup of coffee in over 2 months because it makes my tongue sting , and tastes horrible.  a lot of meat tastes rotten.  I feel nauseous a lot of the time & my stomach just hurts.  I am so tired all the time.  If I climb a flight of stairs with a small clothes basket, I feel like I need a nap.    I feel weak and tired and my vision is blurry sometimes.  I have a history of clinical depression, but I had been taking my meds and was doing fine, when out of the blue, I started getting more and more depressed  and anxious and crying at the drop of the hat.  My doctor took me out of work for depression, but I kept telling him that somwething was physically wrong with me.   Then I started wishing I would just die.  Then I started thinking maybe I should just kill myself and get it over with.  I knew some of this came from Topamax, like the weight loss and the taste, so I went online the other day to lopk up ALL th eside effects of Topamax and found the list and wrote down all the ones that I am having.  VERY SCARY,  I also found another site where a bunch of people were saying that they were having issues with the generic Topamax that they hadn't with the real Topamax.  I need to get off of this drug before it kills meor makes me kill myself.

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3boys, Community Member
6/17/10 10:28am

I've been on Topamax for approx 2 years for bipolar disorder and migraines.  About 6 months ago, I switched from the brand to the generic.  At first, it didn't seem to be working as well so the doctor increased my dosage.  In the past 6 months, I have gained 50 lbs, started getting migraines almost weekly, moods were all over the place, etc.  Went off of it altogether for almost a month and nothing changed.  Started it back up and had NONE of the same side effects I had when I first started 2 years ago (tingly scalp, hands, etc).  I finally put 2 & 2 together, did some research and realized that the generic is NOT the same.  I asked my brother-in-law (who is a pharmacist) and he said it's supposed to be the same, but Topamax is one of the few that really isn't and it wouldn't hurt to try.  I'm fortunate that I can afford the $40 difference in copay so I called up my doctor to get a prescription for the brand name.  Even though I've been taking the generic, after taking 1 pill of the brand, I started getting the "tingly" feeling.  I've been taking it for almost a week now and I've already lost almost 10 lbs of the 50 I gained, headaches are getting better, and my mood is started to stabilize.  Keeping my fingers crossed that this continues....

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don, Community Member
6/27/10 5:52pm

I switched to the generic and it did not work for me either.My insuraces silverscript and united health will not pay for the name brand,i have appealed both of their decisions and now went from 400 mg daily to 0 mg daily due to my insurance.My doctor did his best ,so did i ,we lose.

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Jenniferswrld, Community Member
7/22/10 8:23pm

hey! YES YES YES There is a serious problem with the generic. and I have been round and round with my ins company. no matter what I or my healthcare provider does they can't switch it back. I've reported it to the FDA, which is what everyone that wishes they could get their brand name topamax back should do!!! I had been on topamax for 5 years, I took it for both migraines and to work alngside my lamictal for bi polar. wow wasnt life grant. for the first time I wasnt just stable, I was HAPPY! 7 months ago they switched me from brand name to generic and wow did things change. I started getting migraines everyday and I became a complete loon! so of course I went off of it. After all of that, I started breaking out like I was 15 again, it was horrible! I hadnt realized that the topamax was also blocking bad side effects from the Mirena IUD I had in. It's horrible. Its been 7 months, and honestly... I just want my life back. the generic is not the same.

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KarenB, Community Member
8/ 2/10 6:49pm

Our son takes Topamax for seizure disorder.  In July we switched to the generic brand, and he's been having about 3 seizures a week (actually 5 this week), when before he would have about 1 a month.  I called the doctor's office and asked if the generic has been an issue.  The nurse I spoke with said she wasn't sure about Topamax, but that other generic drugs such as Lamictal cause all kinds of problems.  She consulted with the doc, who called in a prescription of the regular (non-generic) Topamax.  And of course, like all of you above, the insurance doesn't want to cover.  But the pharmacist told me that the doc can call the insurance company (fax a form) that the non-generic is medically necessary, and usually the insurance will comply.  So I will call the doc tomorrow and see how that works.

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bringbacktopamax, Community Member
9/ 7/11 11:14pm

I also experienced the "acne" on the generic along with the daily headaches. I hate the generic it is nothing like the brand and it should be against the law to be sold as anything "like" Topamax

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Kingskid927, Community Member
9/17/10 2:22pm

I picked up my presciption of Topamax and did not know the pharmacist had taken it upon himself to switch me to generic.  After taking it for 4 days and having a headache everyday.  I get heachaches that feel like I have a brain tumor by the way.  I decided to check the bottle for some reason and I noticed that I had been given generic Topamax.  I called and raised the roof.  They immediately refilled my Topamax with with the Brand and I had no problems.  There is a difference.

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Teri Robert, Health Guide
9/17/10 3:53pm

I can well understand your frusration.

 

Thought it might be of interest to you that your pharmacist may have been following the law. In many states, unless your doctor indicates "Brand name necessary" on the prescription or you specifically tell the pharmacist that you'll only accept the brand name, they're required by law to fill with a generic if available.

 

Are your prescriptions covered by insurance? If so, don't be surprised if your insurance company starts insisting on the generic. Many insurance companies won't pay for brand names once generics are available. With my insurance company, if my doctor or I insist on the brand name, the insurance pays what they'd pay if it had been generic, and I have to pay the entire balance.

 

Teri

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michelle h, Community Member
10/11/10 10:38am

I have tried to switch to the generic 2 times.  The first time was when it first came out.  I didn't make it four days without horrible headaches that would not go away.  I never experienced that on the brand!  I had to switch back to the brand to get it to go away.  I tried the generic again this weekend because the cost was getting out of control and I thought just maybe there was another "trigger" the first time.  Yeah, no!!! It only took three days before the headaches of all headaches.  I spent the weekend in bed before my husband got back to the pharmacy and refilled an old "brand" prescription. My headache immediately started going away.  I spoke with two pharmacists about this they said the "inactive" ingredients in the generic could be reacting differently in people thus causing the active ingredient not to absorb.  Let me tell you what it was like I was not even taking a pill while on the generic.  I might as well not take it if the insurance makes me take the generic.

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Lindsay-Loo, Community Member
10/15/10 11:50pm

Does anyone have Blue Cross Blue Shield Texas?  I know they don't cover the name brand Topamax, but if your Dr. calls up the Ins. Co., can he make them?  Just wondering...I'm suffering over here with these generic Topiramate Tablets from Mylan!!!  I might as well be taking SUGAR PILLS!  Ugh!

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Jo, Community Member
10/19/10 6:47pm

I've been taking topamax since 2007 and then the insurance co switched me, without me even knowing it, at first, and my migraines got worse and so did my skin!!  Did anyone else experience this??  I got horrible acne bumps!  Now even if my Neuro calls my meds in as "Dispense As Written" I still get charged a ton of money for topamax bc my insurance wants to give me the generic meds...it's just horrible that they can do this!  I'm allergic to the generic stuff!!! 

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love22, Community Member
11/24/10 5:45pm

Yes, it did not work at all- It made my headaches worse. Now my insurance is not allowing me to get the name brand without penalty price.. and topmax is super exspensive.

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Lrr, Community Member
12/19/10 12:03pm

Please, fill out the FDA form that tells about the problem. Go online and search for it. If enough complaints come in, perhaps they will examine the descrepency. The generic landed me in the emergency room.

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Francesca, Community Member
12/21/10 12:55pm

I found the generics for Amerge and Imitrex worked as well..

 

BUT I am on a daily dose of Fioricet-2 every AM, Amitriptyline 75 mg in PM, and 360 mg. Inderal (180 in AM and 180 in PM) AND have stopped ALL DAIRY and Red Meat.

Since I went on the above daily regimine I have not had a bad migraine-if I do slip up and have some dairy I get a twinge where the migraine starts, but basically I am migraine free for the first time since I was a teenager..and now I am 65!

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Teri Robert, Health Guide
12/21/10 2:10pm

Francesca,


-:¦:-•:*'""*:•.-:¦:-•*Welcome to MyMigraineConnection!*•-:¦:-•:*'""*:•.-:¦:-

 

You're taking Fioricet every day? Fioricet is not meant to be taken daily. In fact, when taken daily, it can cause serious problems, including medication overuse headache. If you were to miss a dose, it's likely that you'd have a headache because you didn't take it. That's medication overuse headache. You can read more about it in Medication Overuse Headache: When the Remedy Backfires.

 

There are other issues with daily use of medication such as Fioricet, especially given that the butalbital in it is a barbiturate. Using these medications can increase risk of transformed Migraine (See Transformed Migraine - Risk Increased by Some Medication.)

 

Welcome again,

Teri

 

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Miller1968, Community Member
2/20/11 5:29pm

I have. I have an intolerance to many of the migraine medicines. Recently my doctor prescribed Procardia XR. I questioned him about this medication because I work for a Cardiologist and new it was a blood pressure medicine. His response was it may be prescribed for different therapies that are not commonly known. After 10 days of being on a low dose of this I was symptom free. I also did not have high blood pressure and it has not affected this by lowing it as well. Apparently this medication is a Ca+ channel blocker which also dilates the bloods vessels in the body. I have been symptom free for several months now with initially the only side affect was feeling sleepy that subsided shortly after starting therapy. It couldn't help speaking to your doctor. Keep in mind, not all medications affect people the same way but for me, it helped.

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heaven2hell, Community Member
3/21/11 12:44pm

I am a militay wife and its sad because even so said they are the same there is a reason the more costly ones work better and cost more. I have had several illnesses and yes I have seen the generics not work as well no matter what anyone say. We pay for insurance and we should be able to have our dr.s op for the medicain that works for us. Not the ones that are cheapest on our insurance. When insurance goes up. They dont call us and ask if we can afford for it to go up , now do they? Sorry to all who have to suffer with this I understand.

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IHAVEMIGRAINES, Community Member
3/26/11 10:19am

You take this for migraine prevention?  Is this off label prescription by a neurologist?  I would be cautious, get your office staff to monitor your levels weekly just in case.  Best of luck!

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Karmell, Community Member
4/19/11 3:22pm

I have been on Propranolol for about 4 years for my migrianes.  It is a blood pressure medicane as well.  And it has worked great however I am having trouble wiht my triglycerides being extremely high.  The only cause we can find is that beta-blockers can cause this...propranolol.  So my doctor is wanting to switch me to Topamax however after reading these comments I am unsure about that because I would on the generic because of my insurance as well.  But I may ask about how close channel blockers are to beta blockers.

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Jennifer, Community Member
4/10/11 3:19pm

I have taken topamax for 3 years for headaches and seizures it worked at first until I had to start getting the generic version. When this took place I noticed my headaches were more intense & I started having more seizures. My doctor had to increase my dosage. 

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Carolyn, Community Member
4/24/11 9:05am

Some ingredients ARE different in the generics. Each generic brand is also different. I have been taking Topamax for a seizures disorder. One particular brand of generic is coated with carnoba wax. It's the inactive ingredients that are different. Check them out please. I request a particular generic brand and then I have elected to request my doctor take me off Topamax after reading the warnings about it. I don't believe the generics are as effective as the main brand is. That is why my primary care doctor where I lived before would write prescriptions no generics. It's more costly if there are generics available but in the long run it may be worth it. Personally I now want off Topamax.

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chrischris, Community Member
5/26/11 2:44am

I took generic topamax and it worked for me. What is the dosage you were on doodle?

 

I got it online from International Drug Mart, may you should try from them

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islandantoinette, Community Member
1/18/12 8:58pm

PLEASE PLEASE PLEASE WHAT BRAND IS YOUR GENERIC????? And what dose are you taking? Lost weight? 

I NEED TO KNOW!!!!

HELP HELP PLEASE!!! is it Jansseen?  That is what I see on their site.

Do they take ins.? Or only cash pay?

Thank you

Antoinette

 

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OMG, Community Member
7/27/11 1:17pm

Yes!! I tried that generic drugI  had bad dreams on it, so my doctor stopped it right away, the only bad part about the brand drug i went bald, in the top of my head and sides.

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vilmarie35, Community Member
8/17/11 8:01am

i was in topomax for a while after the put me on topiramate i started to get every agressive with everyone, anything will set me off. But the worse was the pressure in my head, chest and left side arm pain i got off from it now im getting 4 migaine in a week is realy bad insurrance company do this crap to us with everything we pay them maybe we should all get together and start bugging congress about it to do something about this crap.

 

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bringbacktopamax, Community Member
9/ 6/11 10:38am

I have been taking the generic brand of topamax now for around a month not only have i not lost any weight i have gained terrible headaches, nose bleeds constant ringing in my ears, extremely short temper, aggression, nausea, extremely emotional, cannot think straight, cannot remeber how to spell my own name, tingling in my feet and hands, list goes on and on.  I have increased the dose to try to hit the "magic number" whatever that is.  I was on the brand topamax a few years back due to migraines and it was an absolute wonder drug for me then and the weight "fell" off along with no more headaches!! within a few weeks of starting the med.  Whydo they alsways have to screw up a good thing.  My insurance will only cover $50.00 & I will be responsible for $400.00 a month if I want to go back to the brand sure no prob, if I don't want else like electricity! Let me know if anyone else has gone thru this, not that it will change anything just curious

 

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islandantoinette, Community Member
1/18/12 8:51pm

ALOHA I JUST READ YOUR POST DATED 9/6/11  I CAN ONLY HOPE YOU ARE STILL ON THIS SITE AS I NEED YOUR HELP!!!

PLEASE PLEASE PLEASE WHICH BRAND OF GENERIC TOPOMAX DID YOU TAKE???

WHICH BRAND ARE YOU TAKING???? PLEASE LET ME KNOW SO I CAN MAKE SURE TO STAY AWAY FROM IT! AS I JUST STARTED TAKING A GENERIC AND IT IS THE ZY GENERICS BRAND.  I'M FREAKED AND ALSO WANT THE BRAND TOPOMAX BUT MY DR. WON'T DO THE PAPER WORK TO GET THE INS. CO. TO PAY.  AND IT IS AGAIN $314 MY CO PAY WITHOUT THEIR PHYSICIAN AUTHORIZATION PAPERS. AND MY HUSBAND WON'T PAY IT. HE GETS MAD WHEN A MED COSTS $40 INSTEAD OF $10 FOR A CO PAY. 

 

 

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heather steinmetz, Community Member
9/15/11 3:26pm

i take generic topamax for bi-polar disorder.  i was taking it from one pharmacy (walmart) for two years, and it was working wonderfully.  then i lost my insurance.  so i had do some research online to shop for the best generic price, and i found that costco was the best in my area (by a considerable amount, may i add).  well, within two weeks i started showing signs and symptoms of bi-polar disorder, and there is no way in hell that the two meds could have been of the same quality and of the same pharmaceutical make-up.  i then switched back to wal-mart and just bit the bullet and paid the out-of-pocket charge for the original cost, robbing peter to pay paul each month.  i did not care what it was - i could not fucntion or take care of my family without my medication

 

stay away from costco pharmacy - you really and truly do get what you pay for

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Teri Robert, Health Guide
9/15/11 3:54pm

Heather,

 

I suspect the problem you had was due to Costco buying their generic from a different manufacturer than WalMart. Unfortunately, this can happen at times even when you buy from the same pharmacy because they sometimes change which generic manufacturer they're buying from. The problem stems from the FDA allowing a difference in bioavailability in generics. You can find information on this in Topamax or Topiramate for Migraine - A difference?

 

Since Topamax became available in generic forms, we've had quite a few patients have problems with the generics, and many of them have had issues from one time to the next when they fill their prescription at the same pharmacy.

 

Teri

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swillson, Community Member
10/ 5/11 3:16pm

Hello,

 

I started the generic for Topamax a couple weeks ago. I had to call my doctor today because of how I have been feeling. He had to cut back the dosage. I haven't been able to eat, I have been feel nauseous, light headed, my back has been hurting like crazy. I actually forgot my address yesterday! I can't think straight either and my vision has been blurry and my stomach has been kind of crampy. It has helped with the migraines some but I have been having more of the every day headaches more frequently.

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Nancy Harris Bonk, Community Member
10/ 7/11 9:29am

Hi there,

 

Were you taking the brand Topamax before you started the generic, or is this your first time taking Topamax? If it is the first time starting it, this medication must be started at a low dose and tapered up slowly according to the Migraine specialists we work with. You can read more information on Topamax dosing on our Topamax profiling page, Dosage and Tapering Topamax for Migraine Prevention

 

Please let me know if that helps, ok?

Nancy

 

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swillson, Community Member
10/ 7/11 12:49pm

This was my first time on this medication. My pharmacy always puts me on the generic forms of meds. My Dr. did start me on a low dose and work my way up. I still feel really weird. I called him the other day and he cut the dosage back down. because he was worried since my vision started to get blurry...that was alongside my other side effects I was having. I am also experiencing heart palpitations and it feels like my whole body is shaking, whether I can see it physically or not it just feels like I am shaking, not like I am cold but jittery. That is getting more frequent in the last couple days. This is the 3rd medication I have tried as a migraine preventative. I don't know what else to try...

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Nancy Harris Bonk, Community Member
10/ 7/11 1:00pm

Oh, I'm sorry to hear that. Topamax works great for some people. There is a potentially problematic visual side effect you will want to read about: Potential Visual Issues with Topamax.

 

I know how easy it is to feel as if you've tried everything out there, but there are so many medications that can be used for Migraine and headache prevention that it's literally impossible. You can find a list of potential Migraine and headache preventives in Migraine preventive medications - too many options to give up!

 

And to make an already frustrating issue more so, when we start new medications, it can take up to three months to see a reduction in our Migraine frequency and severity. As our body adjusts to the new meds some potential side effects may lessen. Hang in there. Migraineurs need patience when finding new medications, something we lack when we are in pain.

 

Good luck

Nancy

 

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gidget, Community Member
10/13/11 10:34pm

I have been on Topamax for five years and one day picked up my prescription and thought wow the price must of went down because the price was cheaper.  Then I was taking one and noticed the tablet was a different color.  Then I realized oh they finally went generic.  After waking up every morning for a week with a god awful headache.  I put two and two together and realized the generic Topamax was causing me headaches and my doctor switched me back to Topamax.  You have to request for non formulary.

 

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islandantoinette, Community Member
2/ 6/12 4:42pm

They absoluely do not. I just found out my ins co. absoluely will not pay for the Brand name. $300!!!! BC/BS Fed Plan topamzax and I have been on the Generic for 2 weeks now with headaches from the day I took the 1st pill. It will cost me $300 for any mg. Brand name period yes these ins. co's have us over a barrel and are making their millions on us! I've only lost 14 pounds of the 150 Seroquel gladly put on me for seizures. Just hate being sick and then the add insult to injury don't they?

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TheSteelCurtain, Community Member
10/19/11 11:12am

I took the brand name for a few years for Bipolar. Recently had to return to it recently but was given a generic made by TEVA. It works like the brand name, except I don't have as much of the brain fog as I did. Mind you, I take 400 mgs. a day. Initially my appetite was fine, but things are starting to taste funny and I'm starting to lose weight. So it just goes to show that our bodies react differently.

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hj, Community Member
11/ 8/11 2:18pm

I have been on Topamax for two years for migraines (100 mg per day) and started taking generic topiramate in June 2011. For a few months things were fine, but i did notice I was getting more headaches than I had been getting prior to the generic. About 3 months ago, I started to notice more unusual side effects. The first month, it felt like the pills just werent working at all. I got a lot of migraines, I didnt feel the normal side effects (tingling, fogginess....). The next month, I had a crazy bout of insomnia. I could not sleep at all. So I asked my pharmacist. And sure enough, I had been given the topiramate from two different manufacturers. So this month, he went out of his way to order the pills from Teva. Hopefully, these work. I suggest that you guys try doing this and then making sure that your doctor ups your dosage and makes sure that your prescription includes the particular brand/maunufacturer name on your prescription to avoid getting a different brand each month. Generic should work as long as it is consistent. I will keep you posted!

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dm0225, Community Member
11/20/11 1:51pm

 I can relate 100%. I took the Name Brand of Topamax x 8yrs.  when it first came out.  Was fine on a low dose...it was my miracle pill....had to take Relpax (as that's the only Triptan that works for me)....until the generics came out.  I have been having migraines everyother day lately and am about to completely wheen myself off of the med completely as my ins. will not allow me to use Brand name and I cannot afford to get it on my own.  Insurance companies sure have it over us don't they?  Thank you and blessings

 

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Kudakahn, Community Member
12/ 7/11 5:55pm

Yes I was given the generic in the hospital although I told them that the generic dinot work for me. They refused to listen to me. And I ended up going into a manic episode no thanks to them, had migranes, nausia, screaming memes, and whole body screamed in pain. That means the med did not work for you and you need the brand. I was ready to committ suicide before they got mine back to normal on the brand. You are not alone. you can get your Dr. to write a notestating you need brand only. If this does not work apply to johnson & johnson for patient help if your ins will not cover the cost of the brand.Hope this helps.

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islandantoinette, Community Member
1/19/12 1:02am

 

What can you do when your stupid Dr. refuses to acknowledge that there is no difference in the generic so he won't  ask for or fill out the paper for the ins. to pay for the  the Brand topamax???? I am SO frustrated! I told him about the many groups online and he just poo poos it saying don't  trust what you read on the internet!

Antoinette

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Deana, Community Member
8/ 3/12 3:54pm

If this is your reaction please call your doctor and stop now.. It could be a harmfull drug reaction called Serotonin Syndrome.. It happened to me.. It can be much worse.  It can continue to cause some serious and dangerous side effects.. Call your DR.  I ended up haveing a complete halucination and deluction event.. Convinced I was dying and my family was dying... Horrifying... Don't go through it..  It will take several days to get out of your system.. You can be helped with Ibuprophin.  Do not be left alone during your recovery period but you will feel great when its over...  This reaction can be intensified if also taken with imetrex.

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Deana, Community Member
8/ 3/12 4:14pm

If this is your reaction please call your doctor and stop now.. It could be a harmfull drug reaction called Serotonin Syndrome.. It happened to me.. It can be much worse.  It can continue to cause some serious and dangerous side effects.. Call your DR.  I ended up haveing a complete halucination and deluction event.. Convinced I was dying and my family was dying... Horrifying... Don't go through it..  It will take several days to get out of your system.. You can be helped with Ibuprophin.  Do not be left alone during your recovery period but you will feel great when its over...  This reaction can be intensified if also taken with imetrex.

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Sandra, Community Member
8/16/12 2:52pm

Q: "has anyone ten the generic for topamax and it not worked?"

A: "YES"

I would like to share my experience with generic toprimate. First my background with topamax (the wonder drug.) In 1994, I started having "out of body" experiences, then finally, in 1996, experienced my first granmal. The neurologists, after several brain scans, mri's, sleep deprives etc put me on several (over time) medications. I have been on depakote, kepra, nuerotonene (sp), and finally topamax in 1988 to 2009. Then BAM my insurance company wanted me to pay over $550. a month for this life saving drug. My granmals were under control, I had some resemblence of a life, I could relate to people again, I could maintain order in my everyday life, but it was all gone after that day when I received that notice of topamax was going into a new "tier" in medication. So, I had to accept the generic toprimate brand for $10 and at the mercy of the one pharmacy in my town. Not only do I experience migraines, body pain, and depression (which I never experienced with the name brand of Topamax) I also have to deal with the fact that the pharmacy keeps changing the toprimate suppliers every month. For instance, one month my generic pills are yellow, then the following month the pills are white. Meanwhile, because each company uses different fillers, my body has to adust its' self every 30 days. My migraines continue which I battle with Zomig, as prescribed, drink plenty of water, and still find myself more isolated. Through all of this generic toprimate b.s. all I can say is: "thanks to all those responsible for NOT consulting the users, we are the ones affected!"

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Louise, Community Member
8/20/12 11:14am

I have taken Topamax for 4 years. In the last year I have changed to a generic. I am taking 300mlg per night together with tripelene to control my clusters. (Clusters are on tjhe one side of my face and last for about an hour. ) The pain is so severe that it feels like your face will explode!! However last month I suddenly developed an allergy to the Topamax generic. I came out in red spots and when treated with cortisone suddenly the red spots errupted into a rash. Hives!!! All over my body. Eventually it was controlled through a stereiod drip and itchy lotion. The cortisone lotion made it worse. Now that this has happened I have been taken off Topamax and any of its generics completely. A subsitute needs to be prescribed but I would like to stay off this altogether as Topamax  effected my short term memory terribly. I want to be and feel human again. Surgery is scheduled shortly to establish why I have these clusters, which happens everytime I pick up something heavy. When the clusters start the only solution in Topamax! I just dont want to go there anymore.

 

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Keith Levan, Community Member
8/27/12 2:17pm

My wife takes Topamax, 100 mg tablets twice a day and for 15 years been seizure free. Third day on the generic and started having seizures. Insure has denied paying for the Topamax since there is a generic now. Appeals denied from doctors and Blue Cross Blue Shield, her prescription plan and mine, CVS-Caremark has also denied. Their reply was if we didn't want to pay the $300 for 3 months supply then we could just pay it all out of our pocket which is 300 a month. I am in the process of what other road to try now. I guess we'll put my wife  in the hospital and start trying to figure out which generic will work at the fricking sum of thousands of dollars. My wifes seizures has cost her two wrecks a long time ago and thankfully enough didn't kill her or anyone else. I will not play the game of giving her a new drug and lets see what happens. I cannot believe how sorry these insurance companies are today and our so called goverment lets them get by with this....and the cost of insurance still going up??????? 

 

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Nancy Harris Bonk, Community Member
9/ 1/12 3:57pm

Hi Keith,

 

When you say "Appeals denied from doctors and Blue Cross Blue Shield, her prescription plan and mine, CVS-Caremark has also denied" did her actual doctor not believe her? For some Migraineurs who have tried generic Topamax, they do not have the same results as they do when they take the brand name. Have you looked around for any information to back her up, as in more fuel for appeals? Keep being a thorn in the insurance companies side, they are hoping you'll give in and give up going with the generic. 

 

Hang in there,

Nancy

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RGion, Community Member
8/31/12 9:37am

My ex-wife suffered with migraines for many years. She had spoken to a cousin of hers who also has migraines. My ex-wife's cousin did take Topomax for management of her migraines.  My ex-wife asked her neurologist if she could have the Topomax. He did prescribe the RX for her. My ex also has epilepsy and the Topomax did work wonders in arresting her seizure activity of reoccurance of seizures. Unfortunately, Topomax brand did not arrest her migraine headaches. Her neurologist then prescribed Imetrix brand for management of her migraine headaches.  This originally worked like a charm. If taken at the onset of the headache which my ex could detect. She would take one Imetrix pill and within 30 to 45 minutes or less the Migraine would not develope. It was amaziing. The only concern with Imetrix is that any patient with any cardiovascular issues is warned from taking Imetrix due to risks associated with the dialation of the blood vessles in a patient taking Imetrix.  My ex would never take generic prescriptions.

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Judy, Community Member
9/ 2/12 8:39pm

I've tried topamax generic did not have a good experience.  Stomach pain and head pain.  Wish I could say differently.

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Judy, Community Member
9/ 2/12 8:50pm

 

Hello Everyone,

I'm new to this group.  As I mentioned, I did not have a good experience with Topamax and have been switched to Amitriptyline.  I've been prescribed 1/4 of a 10mg tablet, as I complained to the doctor about the sleepiness.  I'm having breakthru migraines and wonder if 1/4 tab will do anything.  What do you think?

Judy

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Stacy, Community Member
9/11/12 9:12pm

Topamax BRAND NAME is what worked for me, THE GENERIC Topomirate does NOT work. 

I took Topamax for 2years (@$124 a month my copay) until 2009 when the generic became available and my insurance wants to now only COVER $200 of the $1,000 price tag.

Topamax worked so great for me: I worked out, had very little depression, and only a few migraines a month.  Since 2009 I have been on the generic and it is and inferieror product and I have been on leave 2 times from work. The first time for 8 months and now for 2yrs and 4 months.  Every month I only have maybe 2 days WITHOUT a migraine, dizzy, sick, etc...  and I am currently taking 400 mg a day. with other medications for migraines also.

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Patrick Piper, Community Member
11/29/12 10:00am

YES!  I doubled my dosage of Topiramate and it does not have the same effects of Topapax.  My pharamacist said he has also heard this complaint.  My neurologist says it's "all in my head." (and so is my headache!)  Topamax made my lips tingle and my face feel funny, then went tacked my headache.  Topiramate...nothing. Frown

Would love to be able to call the drug company or report to someone.  The price difference is still so significant!

 

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By doodle, Community Member— Last Modified: 06/20/14, First Published: 05/03/09