My migraine meds did not have good effects on me.

Miscellaneous and Personal Stuff I Must Share
1

As I’ve mentioned here a few times before, I get migraines. Bad ones. Anyway, I finally found a good neurologist :smiley: that I absolutely love, and he put me on a new migraine preventative medicine called Topamax.

It wasn’t his fault I had problems with the medicine. Heck, I had problems that weren’t even listed in the five gazillion possible side-effects in all the material we read.

My appetite was supressed, which was normal. However, it was not normal when it would get to the point where it would be at the end of the day and I’d have to force myself to eat something after realizing I’d barely let food touch my lips since that morning.

My temperature comfort level was way off. I couldn’t find that listed as a side effect anywhere, but I always felt as if I were either absolutely dying of heat (to the point where I would end up going up to my room, turning on the fan, lying under the bed naked, and wishing I were in Siberia) or turning into a human popisicle.

I was always tired. I would have trouble getting to sleep, and then, even though I would sleep late enough to get those doctor recommended number of hours of sleep, I would still be tired.

The worst part, however, was my mood. I became depressed. There were days when I wouldn’t leave the house or even bother to get dressed. I stopped being happy. Things which I once would have jumped at the chance of doing didn’t even interest me anymore. I would burst into sudden bouts of unprovoked tears that I still don’t know the cause of. I stopped caring about things. Worst of all, I could even see this happening to myself.(This all happened over a period of about 2 weeks) However, the Topomax stopped the migraines, and I was having a very difficult time finding a medicine that would. They kept that horrible, dreadful, almost unbearable pain from being unleashed upon that one poor spot in my head.

I tried forcing myself to act like my old self, but it just didn’t feel worth the effort. I finally realized that even keeping my migraines at bay wasn’t worth sacrificing being happy for, so I called my neurologist today. I’m no longer taking the Topomax. :smiley: Since I’m going away, he doesn’t want to start me on any new medications until I’m back, which means that I just have to put up with any migraines I get :frowning: and take all those other medicines I have to lessen the severity when I get one. But I get to be my old self again!

2

I had to go off Topamax because of bad side effects, too. Cognitive problems, pins and needles on the bottoms of my feet, it completely screwed up my menstrual cycle, and I found out it made my birth control pills less effective. Also, a mis-dosing combined with lack of sleep and jet lag caused an episode where I couldn’t verbalize anything for about a 1/2 hour. It was very scary; we ran tests to rule out TIA (mini-stroke) and seizure. I didn’t lose weight on it, though, because when I did eat, I ate a lot of junk.

Hope you find something more effective. I’ve been on Zanaflex for quite a while, for migraine that converted to migraine with chronic daily headache. I think I’m going to have to try something else soon, though - it makes me very tired.

I love my neuro, too. I’ve also found that the neuros that I’ve seen that suffer from migraines themselves are much better than those that don’t.

Good Luck finding another med that works for you.

3

Topomax is pure evil. My son was on it for 4 days, before I weened him off of it, (one of the more common side effects is seizures if you stop taking it suddenly). He had a slight loss of appetite, but he had gained weight on previous meds. He also had daily nose bleeds and a complete personality change (not in a good way).

4

Another Topamax dropout, here. I couldn’t tell if it was effective for my migraines, or not, because the friggin’ stuff is so expensive I really couldn’t afford an effective dose. At 50 mg, it did squat.

You’ve propbably tried everything under the sun, but have you tried Frovatriptan, porcupine? When it works, it’s fabulous for CDH (though I understand it doesn’t work for everyone - in fact, it doesn’t work for me, if things are really bad). Still, since it has a longer half-life than Zomig or Imitrex, if it does manage to kill the headache, it seems to stay killed. YMMV, of course.

5

Birth control pills less effective? :eek: What??? NO ONE TOLD ME THIS!!! :mad: Thank God I always use condoms, too, just to be on the safe side, but still- the doctor who prescribed the Topomax knew full well all medications I was taking, including the birth control, and should have told me something. Perhaps it was just your type of birth control pills?

I was having pins and needles in my hands, but I just assumed my carpal tunnel was getting worse again. It’s a relief that I may be able to chalk it up to this, instead, and that it may go away now that I’m stopping the meds.

My mother read about the seizure as a side effect if you stop taking the medicine suddenly, but when she talked to my neurologist on the phone, she asked him repeatedly and he swears that this only happens with seizure patients, despite what the website says. And I hear you on the personality change- I think my family was about ready to kill me; I was being such a bitch. And the thing was, I knew I was doing it, and my state of mind was such that I didn’t care! I’m currently in the midst of apologizing for my behavior.

6

I wonder if the “making birth control pills less effective”, is common with anti- seizure meds. I’m currently taking Primadone to control a hand tremor. And the birth control thing is the only bad thing about it.

7

Does anyone happen to know if its all birth control meds or just certain ones that are interfered with?

8

Mr. Adoptamom had a horrid reaction to Topomax and had to stop taking it after a week. About 5 months ago, he began taking 600mg of lithium daily as a migraine preventative and it’s working beautifully - not one headache since :slight_smile:

9

My bottle of Topamax has one of those little warning labels that says “The effectiveness of birth control pills may be altered by this medication…” (or something to that effect). Not a concern for me, since I’ve had a hysterectomy, but I was a bit startled to see it just casually placed there with no word of warning from the pharmacist.

And in reference to what hillbilly queen said about seizures, I questioned my neurologist, too, about seizures. Technically Topamax is a seizure-preventative, usually prescribed for seizures, and acts on the electrical impulses iin the brain. What were your mother and son taking it for, Monica and hillbilly queen, if I may ask? My neuro said if you’re taking it for something other than seizure-related problems, then you didn’t need to worry about it.

I’m sorry to read such bad stories about it. I’ve been taking Topamax for a couple of years now (200 mgs. a day) and it’s worked wonders. I did notice the pins and needles feeling at first, but it’s gone away, and I do occasionally have the slight cognitive problems (reaching for words), but it’s not that bad, and I’m willing to put up with it for the relief it’s provided from near-crippling migraines.
I was taking 300 mgs. a day, but have since cut down to 200 mgs. My neuro thnks I’ll be able to cut back to 100 soon, and then 50. There’s some evidence that after several years on Topamax, some people are able to stop taking it, and are migraine-free. That’s what I’m hoping for.

10

Yeah, I’ve had a headache for eight days off and on. It is accompanied by severe nausea/vomiting and sensitivity to light. I went to the doctor yesterday and she gave me a shot of Toradol which did little but knock me out. I am in a bad mood, I cannot concentrate on work, and I just want this to go away.

My friend at work gave me two Midrin today. They did not help. And I’ve also had five Vicodin. I know it may sound like I’m overmedicating, but I swear I cannot take this anymore.

11

Bibliocat, my mother wasn’t taking the medicine; however, I had to leave the house befor the neurologist called back so my mother was the only one to answer the phone, thus she was asking him questions. Also, I didn’t get any of those little warning labels all over the prescription bottles, as my doctor had a large supply of sample Topamax and he gave me a bunch of them, thus negating a need to get a prescription filled at a pharmacy.

12

I’m glad you’ve talked to your doctor, and that he’s listening to you. As someone on anti-depressants I know how difficult it can be at first to consider telling your doctor you don’t like a drug because of the side-effects.

I hope when you return the doctor can find you a medicine that works for you.

13

I don’t mean to belittle your doctor’s skill or knowledge, but the proper person to check with about drug interactions is usually your pharmacist, not your doctor.

14

My son was taking the topomax for autism related symptoms. It was the last straw in a long list of meds with negative results. His autism isn’t as bad as some of the side effects the meds gave him.

15

Hmmm…nothing but good things to say about Topamax here…although I have to cut the damn pills in half, as they don’t seem to make a 50mg pill and my doctor has me on 100mg per day, one dose in the morning and one dose in the evening. Small price to pay for no migraines.

I got a mild case of the pins-and-needles at the beginning, but no other problems. I already tend to search for words at the most annoying times, so that wasn’t an issue - I’m really fairly articulate, unless there’s an opportunity for embarassment, at which point my vocabulary will completely desert me…still, no noticable side-effects and very effective migraine control - count me as a happy patient.

I guess this particular medication is the epitome of “YMMV”, huh?

16

I took Topamax, and it didn’t do squat for me. I got the pins and needles in my hands though. My neurologist I was currently going to was a bad one, so I either dropped him, or just haven’t seen him in a while. shrugs Anyway, there are lots of other pills you can try, and in the mean time, I’ve found sleep helps headaches. Lots and lots of sleep. Zzzzzzzzz…

17

I’ve been sleeping for a week now. :smiley: My parents are not pleased. :rolleyes:

Actually, I tend to get stuck in a vicious cycle when it comes to headaches and sleep. I’ll have a bad headache during the night, but until it passes, I won’t sleep soundly. (If it’s really bad, I can’t sleep at all.) So, I end up sleeping very late the next day. Then, I can’t get to sleep the next night, so I end up getting up late the next day as well. I end up over-sleeping. Which might give me a headache, if I don’t already have one. (I can often identify what brought on a headache based on how it feels.) And then, from all the over-sleeping, my back and legs start aching, and I feel weak and tired. Which prompts me to go back to bed.

And, besides all that, I love dreaming (and daydreaming), so I’m partial to sleep.
I often say that “my bed is my seductress”.

Anyhoo…

18

koeeoaddi, I have tried Frova, and it didn’t work very well for me. My neuro actually had me try it as a preventative for menstrual migraine (take it 3 days before and 2 days into my period), to no avail.

For those concerned about the birth control pill issued, from WhatMeds

And from RxList (my favorite prescription drug site - very complete, and quite technical)

We were using condoms as well when I was on the Topamax, but I was feeling so crappy most of the time there wasn’t much nookie going on anyway.

As far as sleep goes, in my younger days it was a reliable way of getting rid of migraines, but that stopped around 7 or 8 years ago. And too much sleep has always been a trigger for me.