I have just been given Topamax. Sitting here looking at the fine print in the literature.
Before I take it and become a pill-induced moron, has anyone else had experience with this drug for MAV?
If it worked, how long did it take before you knew?
Did you experience any of the fifty some horrifying side effects? Was it worth it?
Yes,
I felt drugged and depressed, my tinnitus got worse and I developed a feeling of fullness in the ears (which I don’t normally have). I felt back to normal within a day of stopping it). I also got the tingling in the hands, but that wasn’t so bad.
It actually has very few serious side effects for an anti-epileptic drug (AED)! Hard to believe … but most of them are minor except kidney stones.
It is very effective for migraine, however. One of the few drugs approved for it.
Adam
I already have fullness and tinnitus, so I don’t need more…I don’t react well to drugs, as a rule.
This has a list of side effects of this drug: nlm.nih.gov/medlineplus/drug … 97012.html and it’s not a pretty sight.
I have seen posts on migraine forums where people have gotten kidney stones, hair loss, aphasia, short term memory problems, and all kinds of other problems. I guess if I was having hideously painful headaches every day I might rather go bald. But it seems rather a bad trade off. And I don’t have headaches. I have vestibular migraines.
If I get bad reactions to it, I will stop taking it. I can’t deal with aphasia. I do public speaking and teaching. I can just see me in front of an audience of 150 people searching for a word that just won’t come, or forgetting what I was talking about in the middle of a presentation. Right now, all I have to deal with is muffled hearing, dizzyness and nausea.
It might be worth trying - it might work for you. Some people seem to be able to tolerate drugs that others can’t. So don’t give up on it without giving it a try.
Can you tell me about your vestibular migraines? What are they like and how often do they happen?
Years ago I had them intermittently and didn’t know what they were. It never dawned on me it was another form of migraine. I just felt ill–had tinnitus, muffled hearing, felt nauseated, shaky, was pale, and very tired for several days. I would sleep a lot. Then it would go away and I would be fine until the next time.
This has gradually evolved into a chronic condition. My neck aches behind my ears. I have constant disequilibrium (like walking on sofa cushions everywhere), short vertigo episodes, constant nausea, constant roaring tinnitus with additional banshees and furnace motors in the right ear, inflamed inner ears (MRI shows inflammation in the cochlea), hearing loss in lower registers, muffled hearing, and a loss of life as we know it. I am starting to miss a lot of work, family events, meetings, deadlines, and can’t keep up with things—too tired, spend weekends sleeping. I was diagnosed in August after six years of being diagnosed with one thing after another, but never migraine.
After a second opinion and a lot of self education I think this is the first diagnosis that makes perfect sense. I am a confirmed migraineur anyway, with visual aura and no headache, and occasional classic virulent migraine headaches. I thought I had my migraines licked, because I avoided triggers and only have them about once every three years. That’s not bad. It never occured to me that these “episodes” I have had for decades were another form of migraine, but if you take the headache out of the equation they are just like a migraine.
I am trying the Topamax, just at half the dose they recommend. I’m being cautious.
I really want my life back, but I want my brain with it.
I find that trying to keep up with regular exercise, like daily walking, is helpful with dizzyness and nausea. But sometimes I do it and it’s too much of an effort, and afterward I have to sleep for hours.
I hope something works. Soon. Unfortunately it seems everything takes months before you know if it works or not.
Thornapple,
I took Topomax for a few months with very little side effects. It left me tired all of the time, but not like I was doped up. After a few weeks most of the side effects went away.
There was one side effect for me that wasn’t bad at first but kept getting worse, even after the other side effects started to fade away, and that was my temper. It flared to an uncontrolable level and I had to quit taking it. I did have limited success with my vertigo and balance symptoms though, and the doctors feel that if I would have stayed on it longer, the symptoms would have improved even more.
BTW, your discritpion of your attacks and symptoms sound so familiar it’s almost scary. My balance was so bad that I could tell within a couple of days how well a new med was working, unfortunately I couldn’t tell the side effects for at least a couple of weeks.
Brian B
Well, I have now been taking topamax for six days, but I started at half a pill per day…so that’s about 12.5 mg a day. I thought I would try a slow increase and see if that helps prevent side effects. Nice theory, anyway. I also looked up the drug on my health insurance website and it won’t be covered unless it is pre-approved by the health insurance company, and it has to be by prescribed a neurologist. So far, I am taking free samples given my doc’s office. If the insurance won’t pay for it, it costs about $300 a month!!!
I have noticed two things; I tend to get teary (oh, woe is me) and I tend to get flares of anger. Don’t know if it’s the drug or me. Other than that I still have 100% of my symptoms.
I read up on topamax and discovered things like it causes some people to break out in bald patches (oh, that would be fun–I am a woman with almost waist-length brown hair), and it causes dry mouth and consequent dental caries (one deals with that by using special toothpaste, mouthwash and chewing gum, avoiding sweets). I think people must be at their wits end to risk the side effects of this drug. I know I am.
I just wonder why, if I didn’t have this problem so badly ten years ago, I have it chronically NOW. If I knew that, maybe I would have a clue how to manage things so I wouldn’t have to take this expensive and hideous drug.
Further thoughts:
Feeling better today, for no reason at all. That’s how this works.
I think that taking a drug that makes you feel like crap and has equally or even more serious side effects is a really poor solution for an illness that has serious, life-changing effects.
There has to be a better solution. And if there isn’t, perhaps I am better off living with this illness rather than take drugs and have kidney stones, go bald, suffer aphasia, sleep all the time, appear stupid, etc.
I have years of experience in being nauseated, dizzy, walking funny, going deaf, and sleeping on the floor under my desk at work. Even if I have my life ripped off by this illness, I don’t have to put additional afflictions into the mix on purpose. Why am I taking this freaking dangerous drug?
I really don’t want to have any experience at all with being bald and passing kidney stones. I am not into iatrogenic disease.
Anyone else have any thoughts?
I was on topomax for maybe six weeks last year. The good side effect was i lost some weight. The bad ones I experienced were the parasthesias, I felt ever nerve in my body, a constant tingling sensation that became unbearable. I also had alot of visual problems…was unable to read…sunlight would burn my eyes. The effects did not start until I got up to just 50 or 75 mg. per day and they did not stop. I went off it cold turkey…not a smart thing to do. Saw no positive effects at all regarding the chronic disequilibrium, tinnitus or fullness
Well, still taking my half a 25 mg tab. I have noticed some weird prickly sensations on my heels, my face, and my tongue.
Other than that I am no stupider than usual as yet.
I have stayed fairly well since November 7, and what that is due to, I have no idea. I’m just glad.
That doesn’t mean the dizzies went away and my hearing came back; it just means I am not nauseated, lying in bed and doing nothing, and feeling like I can’t lift a finger. Instead, I can go out and about, work, think, and manage fairly well even though I am nauseated some days. So I guess I am not having too many silent migraines…if that is what is going on. I wish someone had a clue what was REALLY going on in there…I like a good mystery, but this one sucks.
Next week I go to a migraine clinic for evaluation by a team of people. That should be interesting. If they get all confused when I tell them I don’t have migraine headaches but instead have silent migraines, then I hope they can get it together and help me anyway. I may not be in pain, but I sure am impaired.
Migraine clinic was the wrong place for me…they don’t have a clue what vestibular migraine is or what to do with me. They are used to helping people deal with pain.
I get the feeling I am in charge here. If so, then I am taking over from now on. The docs can lead, follow, or get the heck out of the way. Since there is no lead in this situation and I just wasted another 6 months, then off I go. Follow, or MOVE.
Thornapple,
I had a recent expereince to the local ENT office, and was diagnosed with bilateral meniere’s. I tried to tell them that I do not have meniere’s, but vestibular migraines instead. They told me that they had never heard of vestibular migrianes, much less silent migraines and that my symptoms matched meniere’s (which they don’t.) I tried explaining to them that I have had successfull results treating my symptoms as migraine related and they refused to except that, told me it was just a coincedence, handed me a pamplet on meniere’s and told me to have a good day.
These doctors refused to admit that there was a smidgeon of a chance that they might be wrong, much less do any research to see what a vistibular or even a silent migraine was. I just wanted to strangle them. I was even more furious when I got the bill in the mail!
Anyway, just wanting to let you know that I understand how you feel. I hope that things get better for you soon.
If it helps, I found a nuerologist that specializes in dizzyness disorders who diagnosed me with MAV.
Yeah, I think I will have better luck going in to the next doctor’s office moaning that I have unending migraine headaches with aura, and in addition the nausea and dizziness are making me miserable. The heck with the deafness, tinnitus, ear beeping, vertigo and extreme tiredness. These must be my “vivid imagination”, or better yet, hysteria. Yup, I’ll just have plain old migraine headaches from now on. Maybe I can get treated for that. I should end up with the same result…getting treated for migraine. That is what I need, after all.
:twisted:
I really understand your frustration. It is quite unbelievable and until the actual root cause of MV is found I imagine it will continue to go on like this.
I am very lucky to have an understanding GP who thinks I know what I’m doing and will prescribe the drugs for me to trial, let me know all the info she knows about the drugs, and then leave it up to me. It took about 15 drugs but I eventually found one that works well for me.
Well, I am cranking the stupamax up and not enjoying it much. I am having aphasia problems, and getting the pins and needles in my feet and in my FACE, which is an odd feeling. And I am very sleepy. The worst of it is, here I am getting stupider by the minute and I have to say my symptoms are not improving a bit; in fact, they are getting worse. So stupamax hasn’t done much for me yet. I am up to 50 mg for the fourth day and I am very much tempted to crank it right back to 25 again, because this is pretty unpleasant.
I don’t see the point, frankly, to getting rid of my migraine by having a lobotomy. Maybe I would if it was a headache. But frankly I don’t feel any better. I’m supposed to give it three months, but in three months I’ll be so stupid I won’t be able to push the order buttons at the local fast food window. Besides, all I do is sleep.
I feel like my head is wrapped up in a big sleeping bag and I can’t hear much at all. It sounds like my head is inside a bucket. The walking on sofa cushions thing is not as bad, but that could just be one of my periodic…see, there goes my thought again, twitting off. No idea how I was going to end that sentence.
This drug is from heck.
I am back down to 25 mg and this is much better.
The headache clinic people decided I suffer from high cholesterol and menopause and sent me a letter telling me they would send a full report to my doctor of their incredibly intellectual findings. Boy, was that a waste of time. One of the finest neurologists in the U.S. already diagnosed me with MAV, but these guys never heard of it. Since hysteria is out of fashion it must be menopause. Gosh. Gee whiz. I’m sure glad I can depend on the medical profession.
I now have six diagnoses from seven doctors. It’s time to pick your favorite, folks.
MAV is the only one that makes any sense. The rest of it is crap.
I understand the thing about wanting to educate these so-called medical professionals, but having worked with them professionally I know it isn’t very effective. It’s really too bad.
I am new to this site but I am glad to find others that have the same problems as I. I have been on Topomax for about 6 months now, 3 months @ 25 mg and now 3 months at 50 mg. I have had very few side effects other than I was able to lose some of the weight that Depakote had made me gain. It hasn’t stopped my migraines but it has made my good days better. I didn’t realize that I was in a constant fog until it lifted on the days that I was not so bad I was forced to stay in bed. You know, the days that you push through so that you can still participate in life. I am trying to keep a positive attitude that I will find that right combo of meds that will take this problem that has taken over my life for the past five years out of my daily thoughts and worries. 
Happy New Year, Suzanne. I am finding that 25 mg is working pretty well for me. 50 made me into an idiot and I was going to just taper off totally until I realized how good I felt at 25 after going down from 50. It would be great if I lost some weight.
It does take over your life, does’t it? Takes over your thoughts, if you let it…
Thornapple-
I haven’t posted in awhile, but I was just catching up. Your posts really hit home with me, but especially when you asked the question, that the problems you had 10 years ago are nothing compared to what you have “chronically” now, and “Why now”??? If I may be so blunt, can I ask your age?
I only ask, because I also, have been hard hit in the past year (enough so that I can’t work right now), but I tend to believe that my age (41 year old female) and the start of menopause has much to do with my troubles.
I definitely have MAV, and have seen some improvements with inderal (beta-blocker), dietary changes (no caffeine, no chocolate, and definitely no MSG), and vitamins and herbal supplements ( magnesium, gingko, migrelief). However, the week before my cycle is ALWAYS tough, and I wonder if you see any common link there.