Sunday, May 27, 2012

New to to Topamax and Migranes (kinda) are these side effects? or is it something else?

By Snowdrifta421 Monday, August 20, 2007

OK, I have been having migraines for years off and on but nothing to get to excited about I never gotten them frequently enough that I was very concerned about it until recently. A few months ago I started having migraines more often like two or three a month and they just got closer and closer and closer together until it was like almost a daily thing. I have also had what appear to be cluster headaches they started about four years ago although I didn't even recognize them until very recently, now that has certainly raised the bar for the worst pain that I have ever felt!!! It used to be induced labor, but the last three headaches that sent me up to the emergency room, blew that right out of the water. Anyway I am rambling.

 

To get to point here, I started taking Topamax about 10 days ago (obviously to avoid the headaches) I have tapered up to 100 mg/QD. I only take it night. It seems to be working, I have only had one headache, to speak of, so far and it was pretty mild in comparison. I mean I've had a few minor tension headaches, but nothing that really even warrants whining about. I even seem to be a little more optimistic than usual about the general state of... everything I guess, which I think is pretty cool (see what I mean).

 

Up until three days ago I was quite happy with the Topamax. Virtually no headaches, a HUGE plus. A little bit more positive outlook things, that never hurts. Of course, I've started to drop some weight, from what I've read that is a very common effect. That's a big plus for me since I've battled it since about the sixth grade up until I was 21 and started using meth, I quit that four years ago. By the way, quitting, in my opinion, was not that hard. I would urge anyone that thinks they can't do it to just give it a try. I would have quit a long time before I did if known it be so easy. OK I'm straying from the point again sorry about that.

 

So three days ago I started, very suddenly, to feel very fatigued and also achy. The achiness isn't like a general soreness in my muscles but more like in my bones and joint tissue and only happens when I use them. For instance, when I walk up or down the stairs, my legs will hurt deep like in the bone and in the hip joint or when I clean off the counters my arms will ache and my wrists. If I spend any length of time with my spine bent at any angle or arms upward or forward/outward position, my spine will ache for anywhere from fifteen to forty-five afterward. The pain usually lasts for about five minutes or so in my upper extremities, usually about two minutes or less in my legs. The intensity of the pain is only moderate maybe a five or six on a pain scale.

 

The fatigue, however, is much more intense. I mean it really takes just about every drop of motivation that I can muster up just to perform a simple mundane task like folding the laundry or tidying up the kitchen the fact that it is also physically painful to do these things doesn't add to their appeal.

8/20/07 6:40pm

Greetings Snowdrifta421!

 

When I read your story about Topamax, it brought me back to my very unfortunate experience with the drug.  I, too, was prescribed Topamax as a prophylactic for migraine.  What happened to me was awful.

 

First, I want to say that it sounds like you got to a fairly higher dose of Topamax pretty quickly.  I was very slowly titrated up to 100 milligrams of Topamax over a few weeks.  While I am not sure how much of a time lapse there was between your lowest dose (25 mg?) to the higher dose of 100 mg, I was left with the impression that it happened pretty quickly.  Did your doctor prescribe the titration of the dosage?  If so, have you let him/her or his nurse know about all of this?

 

In any event, Topamax for me, was like taking mega doses of marijuana, or even worse.  I was completely drugged up, slurring my words, unable to concentrate or remember anything, unable to drive and had blood shot eyes.  It was almost impossible for me to go to work, and frequently, I called in sick because I just didn't have the energy to get out of bed. 

 

When I finally made the connection between the Topamax and my drugged state, I went to my psychiatrist, who referred to Topamax as Dopeamax; she had heard many reports of Topamax severely imparing her patients and causing drug-induced stupor.  Granted, my experience was pretty drastic.  But if you are asking whether or not the Topamax could be responsible for your tiredness and lack of energy, I have to say a resounding YES, it could be what is causing that.  When I slowly went off the drug, my energy level started to perk up until, eventually, I was back to being more or less "normal" (at least for me). 

 

I changed to a different regimen of 80 mg of Propranolol (long acting) for a prophylactic at night and Imitrex injections or tablets for an abortive.  While it does not work 100% of the time, I do pretty well, only having about one bad migraine every two to three weeks, now, as compared to having them nearly every day.

 

I know this is not what you wanted to hear, but it is the truth of what I experienced.  I wish you the very best in whatever you decide to do about your situation.  Please let me know if there is anything else I can help you out with.

 

Kay

8/20/07 10:50pm
Thank you so much for your quick response naykay. Really, hearing anything is great. Since my Doctor is from out of town I haven't had the opportunity to speak with him or any of his staff yet I was able to move my next appoinment with him up to this Thursday and I have taken it upon myself to back off my dose a little bit.  I started out out at 50mg/QD for three days then moved to 100mg/QD so from what I have read that is pretty fast in comparison to others.  It is safe to say that I am generally hyposensitive to medicatications but my guess is that may have been a bit too much too quickly. 
8/20/07 8:50pm

For me, Topamax has been a blessing. My neuro tapered me up slowly, over 2 months, to 150 mg, in split doses. Then, about 7 months later, I was bumped up to 200 mg, again in split doses.

He has me on Migranal nasal spray as an abortive, with phenergan tablets (50-75 mg) as (loss for word here - first day of school for students, & I'm TIRED!)

How experienced with migraine is this prescribing doctor? Do you have ready access to another doctor?

I am NOT a doctor. Even if I were, I would never attempt to diagnose or prescribe via the internet. But, it seems to me that tapering you up in 10 days to 100 mg Topamax is awfully fast.

 

And, not prescribing some sort of abortive and pain control doesn't make sense to me.

 

I wish you many hugs and good migraine management. 

8/20/07 11:18pm

I'm sorry, I forgot to include in my prior post, that I do use Lortab APAP 10/325 as an abortave / pain reliever that is kindof a temporary thing since it will only work for so long. But it works for now. Hopefully we can find a preventative solution within the near future and then we'll work out the rest. One of the downfalls to living in a small comunity is the limited availability of medical specialists. The Dr. I see for my headaches is great though and I have a lot of faith in him.

He is really overloaded with patients these days and I can really tell that though.  I heard through the grapevine that there is going to be another one moving here permanently soon.  My only hope is that my Dr. doesn't drop this clinic altogether since he lives about 110 miles away. But maybe this new guy will be good too, although you know every once in a while you come across a really great doctor... oh well.

Yup, there I go rambling on again.

Teri Robert, Health Guide
8/20/07 11:57pm

Hello, and welcome to MyMigraineConnection!

 

What you're describing could be due to the Topamax, but you really need to talk with your doctor, especially about the issues with the Adderall.

 

You might also talk with your doctor about your dosage and how you take it. All the literature recommends starting Topamax at 25 mg per day and increasing by no more than 25 mg per week. That means that you wouldn't be up to 100 mg per day until the fourth week of taking it. Also, all the literature recommends split dosing. There are two main reasons for this:

1. To lessen the chances of side effects.

2. To keep a steady level in the bloodstream. The half-life of Topamax is too short to do that when you take it only once a day.

 

On the Lortab -- it's not an abortive. It doesn't have the properties to abort a Migraine attack. Painkillers can only mask the pain for a few hours. How many days a week are you taking it. If you're taking it more than two or three days a week, you could be running into an issue with medication overuse headaches, aka rebound headaches. You can read more about that in Medication Overuse Headache: When the Remedy Backfires

 

Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information on the main page of our site, http://www.MyMigraineConnection.com.

If you have any questions, please feel free to post them to the forum or send me a message through my profile.

Welcome again,
Teri Robert
8/25/07 11:21am
Please be very careful. I had a very bad experience on Topomax. Increasing the regimen slowly, I only got up to 75, never made 100, and the neuro told me to stop immediatly! I had terrible achy bones, especially my legs, then within days I lost to my legs and feet. My last 8 days on this I had to walk with a cane, as I was so weak and numb, I kept falling. No, it was more like just dropping...the worst was while crossing a busy street I dropped in the middle of the road, and needed help to get back up. That lead up to these "waves" that would "wash" over me, head to toe. It was like I was just going to totally black out, and I didn't even care to try to fight the feeling. Topomax for me seemed promising at first, but it proved very seriously to be the opposite. I know it works great for some people, but there are serious side effects, so be sure to tell your neuro before you get to the point where I was at.
By Snowdrifta421— Last Modified: 09/06/11, First Published: 08/20/07