Migraine

Morning All,

I have been on Topamax for almost a year, 25 mg's a day. A seemingly low dose. My headaches and migraines have improved but I am having some issue's with side effects within the last 6 months. My menstrual cycle is on its own schedule and as of the last few months I get PMS about 2 to 2 1/2 weeks before I even get my period and as of late it is accompanied by a head cold. I read about evening primrose and thought about giving it a try until I read you should not take it if you take any anti-seizure medicine. I have been checked by a GYNE to make sure there is no other issue and I am fine. I also do have the side effects of tingling occasionally and mild stupidity or loss of words.

Basically I have come to the conclusion it probably is the topamax causing all of this. My Dr who prescribed this to me is bascailly useless. When I want to discuss any new side effects the only response I get is "the medicine treats whats in your head, it doesnt have any effect on the rest of your body". Sounds logical, but unfortunetly I don't believe it anymore. I apologize for the long post and for sounding obnoxious but I am about 2 steps away from beating my head on a brick wall. I am left trying to figure this out on my own because all anyone else seems to do is shrug there shoulders.

The topamax has worked for me but I can't handled the side effects anymore. Can some ex-topamax users give me some postive feedback on a different medicine they were switched too? I know medicine effects everyone differently. But at this point I need some advice from real people that have been on these medications and not just some Dr pushing the latest medicine. I would be very gratefull.

Thanks!
Angel

Good Morning Angel,

The first thing I would like to suggest to you is finding a new doctor. While I can ususally post links into the forum, finding the list of migraine specialist is something I have problems doing. I'm sure one of the hosts or more experienced people will provide you with that info. Having a doctor you can have an open honest conversation with about your medications and other issues is essential when dealing with any medical problem. Migraine disease is no exception.

I have been on Topamax and still am, though for an off label use. I too have had the loss of words and some balance problems. I've gotten used to them and since it's helping I am willing to deal with it. I was having some of the thought issues before that were probably due to menopause.

It's difficult to say what else would work for you. Everyone's body reacts so differently to medications. Topamax at a therapeutic level was working on my migraines, but I had some undesirable side effects the doctor did not like. She has kept me on a subtheraputic level to fight the weight gain associated with the Depakote I am now on that is working for me. Other have tried Depakote and it has not worked at all either for their migraine or the side effects have been too awful.

There is a great deal to consider. First though my advice would be to find a migraine specialist or at the very least a neurlogist who works with enough migraine patients and that you can have a great doctor patient relationship with. You deserve that.

Take care,

Cindy

Personally, I think that a doctor who says "the medicine treats whats in your head, it doesnt have any effect on the rest of your body" is pretty ignorant. If you study neurology (and this is coming from a 'semi-layperson'- I'm a clinician, not a doctor), you start realising that the brain & neurological system affects many things, including hormones.

When I was on topamax, my menstrual periods started getting weird. My problems with ovulation (stomach pain, spotting, migraines, mini-PMS symptoms got even worse, My PMS time got longer (used to be about 3-4 days, on average now, it starts anywhere between 4-5 days before my period & ends about after a week or so after my blood flow starts).
My heavy blood flow lasts one to 2 days a month, if I have any other blood, it's just spotting. My gynocologist said my endometrial lining is "very thin" whatever that means, but could not examine me further, because apparently I have an inverted ut... I had a hormone check last year & it was w/in "normal limits", but considering my flow altered from on average, about 4-5 days to 1-2 days (in a year and a half) & increase of facial hair, my body is telling something the doctors aren't.

Some people find all the Topamax side effects disappeared after about a week after they stopped it, but there's no guarantee. I have stopped it almost a year ago, & while my appetite came back, my memory got slightly better(but not pre-Topamax better), ataxia improved (I had ataxia & gait problems as a child & got teased due to it, so I'm pretty sensitive to this) & feel less like a zombie, a lot of other things didn't go away. However, I had a pretty severe reaction to it & to titeration off of it was completely horrid experience.

I tried Elival which many people find helpful despite weight gain. While it didn't cause weight gain for me (although I did crave sweets more, probably because I was so sleepy), due to my sleep disorder problems & possible seizure problems, those things got way worse for me. My dreams & visions would also get more violent (Topamax made them more psychodelic), like being on PMS. However, many people who don't have such a crazy sensitivity to meds & don't have sleep & seizure disorders, have reported that Elival works well w/minimal side affects.

I use Midrin as an abortive for my moderate migraines- despite the dizziness & light sleep/restless sleep it induces in me, by far has the least side affects for me...I have to be careful of triptans, because sometimes my migraines will morph into basilar or hemiplegic ones (amerge did work well for the classic migraines though). Narcotics increase my dysthesias & parasthesias & make me totally spacy & lethargic...

Personally, I'm looking forward to when I am allowed to use Alleve again, even though I got 3 large ulcers from it. I'm willing to risk it considering that the other meds give me such problems & my three neurologists (migraine, seizure, sleep specialists) can't seem to come up with any plan for me.

Hi Angel,

Cindy is right--you've got to find a good doctor! Many of us here have found that a good HA specialist makes all the difference in the world! HERE is the list of recommended specialists we have on our site.

I'm not a doctor, but I have taken Topamax in the past. I was taking 100mg when I discontinued the med because of side effects. Topamax should be taken as a split dose to be most effective for migraine (i.e., half in the AM, half in the PM).

Oh, and about your doctor's thought:

quote:

When I want to discuss any new side effects the only response I get is "the medicine treats whats in your head, it doesnt have any effect on the rest of your body".

I'm glad you're not believing this! Many medicines do have real, physical side effects on our bodies!

Please, find a new specialist who knows more about migraine and the meds used to treat them! By the way, there are many, MANY meds used to prevent migraine! (Topamax is definitely not the only one!) You can check out our list of preventives HERE.

Please keep us posted--and let us know if we can help in any way!

jenny

Angel,

I'm always very straight to the point, so here goes. Fire that doctor and get one who knows what he's doing. To say that the Topamax doesn't have any effect on the rest of your body is one of the most idiotic statements I've ever heard.

Zonegran is the same class of medication as Topamax. It has the lowest potential side effects profile of any medication in the class. It's also been on the market long enough that generic is available. Personally, I like using meds that have been available that long because there has been more time for problems with it to have been reported.

I didn't do well with Topamax, but am doing fine with Zonegran.

Hope this helps!

Thank you for your reply's. As far as finding a new Dr, I live in the southwest suburbs of Chicago and go to a headache clinic downtown, a very well known headache clinic. I'm sure you all can do the math. The only reason I'm not mentioning the name is because I dont want to deter someone who might actually have a postive experience there. I agree I need a new Dr but at this point I think I would like hear some other peoples positive experiences on different medications so I can look into them myself. I greatly appreciate all of your input.

Angel

Angel

I'm sorry to hear about your problems with Topamax. Can you switch to a different dr. at your headache clinic? I tried that at a different headache clinic and they wouldn't allow it. It might be worth asking.

My son was having a bunch of side effects from neurontin (another anti seizure med). It was affecting his mood. He started having stomach pain. He couldn't sleep and he had no appetite among other things. He is only 14 and I don't think he realized what was happening. It took me about a month to put it all together.

We weaned him off the neurontin almost a week. He is experiencing some side effects going off it as well. The dr. is trying him on topamax within 2 weeks. The dr. said it is a guessing game right now of which medication to go to.

My son tried zonegran for about a week and had to go off it, but that is very successful for some people here.

These drugs scare me as much as anyone, but because our doctor is so wonderful I can feel comfortable giving these to my son. I know my dr. will support me when I tell him what is happening with my son. He is very willing to change doses or medications based on what I report to him.

Good Luck. I hope you can get a different doctor. That would really make a difference.
Jean Ann

I take Inderal (a beta blocker), magnesium, and Vitamin B2. The Inderal reduced my migraine frequency significantly. The magnesium and Vitamin B2 have not affected the frequency much, if at all, but they have definitely reduced the severity. I tolerate all three well.

There are so many options! Please read this article:

Migraine Preventive Medications - Too Many Options To Give Up!

I do want to caution you that although you can get things like magnesium, Vitamin B2, and some of the other supplements you see on that list without a prescription, it's important to talk to your doctor before trying them.

Like the others, I strongly encourage you to fire that doctor and get a different one, even if you have to travel a ways to get to the doctor. Having a good doctor is key to making progress in your migraine management. We can only help so much by giving you information and support. (Not that information and support aren't important. They are!)