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!!

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.

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.

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.

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

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.

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...

What insurance carrier do you have?

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.

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

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..

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.

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

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

Aloha Teri:

Thank you for responding with this information I appreciate it. 

Antoinette

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

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????????

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.

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                                                              

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?

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.

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.

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

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.

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.  

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. 

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.

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.

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.

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!   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?

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

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.

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!

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

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.  :( 

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

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?  

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.

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.

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.

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

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.

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!

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.

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

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?

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