I just went to the doctor because my migraines have increased to daily over the past week. I tried Amitriptyline without success - the neuro’s next recommendation was Topamax. Start at 25 mg and increase weekly to 100 mg. I am SO scared to take this medication. I’ve heard awful stories.
Sleep disturbance/lack of and stress have always been my triggers and I have never had to use any type of preventative med all the years I’ve had migraine. It’s just recently that they have become worse. The doctor gave me a script for a different sleeping pill to try as well. I wonder if I got my sleep and stress under control if I could avoid the Topamax.
hey tamsha,
i am currently on 150 mg of Topamax, split into 50 mg in the a.m. and 100 mg in the p.m. like you, i had heard all the horror stories and was very scared to go on it. so far, i haven’t had any of the bad side effects. the only two i’ve had is the tingling and a bit of the “dopey-ness” that people talk about. it’s bothersome but it goes away as you adjust to each new dose. i did very well on it for the first few months. my migraines were greatly reduced and the ones that did occur were easily managed. lately i’ve had more trouble and we upped the dosage from 100 mg to 150 mg about 2 months ago. still no horrible side effects. not sure if i need to adjust the dose now or what as this latest round feels more muscular in origin.
just wanted to share that not everyone has the horrible side effects. i started off like you with 25 mg doses and worked my way up.
I think if this med is not going to be for you, you’ll know it pretty quickly and can stop without any problems. Also, while my brother’s wife does not experience vertigo or derealisation etc with her chronic migraine condition, Topamax has ELIMINATED her other migraine issues completely. She has no side effects either at 150 mg daily. She used to have headaches that could drop a rhino.
Remember, thousands and thousands of people take Topamax for migraine, as a weight loss drug, and for epilepsy.
Just start on a low-dose and work up at a rate you feel comfortable with.
I too was nervous - and a doctor friend of mine suggested going up 25 mg every 2 weeks instead of every week. Unless you have no refills on your 25 mg prescription, maybe you can try that approach also. It was a little more comforting to have that extra cushion of time to make sure I was used to it at each level before I went up some more.
It has really helped me!! I have had tingling in my fingertips and lips (mostly in the beginning), some constipation (I think the opposite problem is more common - but I like to be different), some visual trails in the morning when I first wake up (again, mostly in the beginning), and occasional word finding trouble. I tried to get up to 200 mg but then I couldn’t have an orgasm; not a problem at 150. I had no dizziness at all at 200 mg; I have occasional mild dizzy spells at 150, and no more daily wobbliness, no more tunnel vision auras. I keep well hydrated because of the slightly elevated risk of kidney stones when you’re on Topamax, but drinking plenty of fluids is a good idea anyway!
It depends how bad you feel and how incapacitated you are - my dizziness was so bad at times I couldn’t walk and I was afraid a severe spell might hit when I was driving and then I might kill myself and someone else too. I HAD to go to Topamax. Whatever you decide, take care and I hope you feel much better soon.
Topamax is a lifesaver for me. If you have been reading the posts you know I have been having some problems with side affects and I believe this is due to my Dr’s inexperience in using this drug with MAV. Before Topamax I was nearly bed ridden, walking with aid and unable to drive a car. Dizzy, unbalanced and with almost constant migraine my life was miserable. At 50 mg Topamax 25 mg in am and 25 mg in pm I was able to cope but still had migraine and so was upped to 75 mg and for awhile was almost normal then the migraine started again so I was upped to 100 mg 50 in am and 50 in pm, that is when the side affects took over and became as bad as the MAV was and the Dr. cut me back to 50 mg, big mistake, this was not the fault of Topamax, the Dr. should have titrated me back slowly. I rebounded back to MAV and now have to deal with that again.
Do not be afraid to try Topamax. It can give you your life back with only a few little annoying side affects. At the very worse it will not work for you and you will have to go on to something else, you will still have made progress. In my humble opinion anything is better than full blown MAV, UG
I hope it goes well for you. I made the mistake of reading all the horror stories about antidepressants and i think it ruined it for me. I think i may have learned my lesson.
Hi Tamsha -
I posted on another subject thread already but I’ll just reiterate that I’ve been using topamax successfully as well for only around 3 months. I’ve played around with the dose a bit depending on the food trigger situation. It’s definitely given me most of my life back with no huge sedation, constipation (sorry Maryalice) or weight gain (I lost 3-4 lbs) and I’m really grateful for that. I’ve gotten tingling/coldness in my fingers/toes but overall the medication has been a big success for me so far. Scott is really right that you will know pretty quickly if you cannot take this drug and you will be able to come off it immediately. I was as desperate as the other members in wanting to get better so I needed to try it regardless.
Gail
Oh, yeah - forgot to add the GOOD side effects: weight loss and cola now tastes icky! I did lose weight, but I think it was mostly because fizzy drinks started to taste bad to me - I finally kicked my Pepsi habit, which I’d been wanting to quit for years anyway. (Never could stand sugar free drinks - they tasted awful to me, plus I think artificial sweetners are bad for you.) I think it was close to 15 pounds that came off thanks to Topamax, and I needed to shed every one of them!
I concur with the above - don’t psych yourself out. Go slowly and let your body adjust. You will know if you can tolerate it over time. I am on it at 75 mg and it has helped a great deal. I got up to 100 mg but could not stay at that level due to the cognitive side effects, but some people can and have even gone higher (as seen by the other posts.) Initially you will probably feel lowsy on it the first few weeks but then it will level out, as do the side effects. I have some - tingling, some cognitive but tolerable, etc but again, it is worth what is has done to help me over all. So don’t worry. Just go slow and see what happens.
Interestingly, I too had the metallic taste for all sodas BUT now that seems to have mostly gone away. Go figure. And now I want that coke/pepsi, dammit because it tastes pretty good! LOL. Hmmm. But I am trying refrain.
I was thinking about trying TOPAMAX as well since I am having such a hard time on SSRI’s, I was wondering though if anyone has gotten better on it that DIDNT have migraines, just the dizziness, brain fog, feelings?
Hi Joli
I only occasionally get a headache with my MAV and my most prominent symptoms would be dizziness, neurological symptoms, brain fog, etc. However, as we’ve all discovered here, apparently MAV seems to be migraine regardless. The topamax has helped me with all these symptoms, and often they vanish unless I stumble into food trigger hell (which happened this week continuously). For me I just need to be continuously vigilant with sleep, stress, exercise, diet, meds, etc.
Gail
Thank you for all your positive posts. I dont feel as hesitant now about trying it although I’m still wanting to go the holistic route first to see if it helps. Going to my first acupuncture treatment tonite.
Another Topomax question…did you find it helped or interfered with your sleep at all? I’m really having sleep issues and dont need another thing to disrupt it.
I already had a sleep disorder before the dizziness symptoms began 3 years ago. When I first started taking topamax it made me very sleepy at night… now I take my second dose in the evening (7-7:30pm) because it can actually be activating for me during the day. I think my sleep has improved with the topamax maybe because it does calm down the brain (???) but I’m still taking a prescription sleep med which I hope to wean off of some day (fingers crossed).
Gail
Thank you for all your positive posts. I dont feel as hesitant now about trying it although I’m still wanting to go the holistic route first to see if it helps. Going to my first acupuncture treatment tonite.
Another Topomax question…did you find it helped or interfered with your sleep at all? I’m really having sleep issues and dont need another thing to disrupt it.
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Hi Tamsha,
If you want to keep the Topamax as your last resort and try other things first check out this section of the forum: viewforum.php?f=24 - it’s about natural and alternative etc approaches to migraine management.
Also (and sorry if you’ve already discussed this elsewhere) check out the “MAV survival guide” - the first topic in this general discussion section. It’s by Scott and Terry (Burd). As you know Scott knows this shit inside out and Burd is very much into managing migraine through eliminating triggers and natural remedies. I’m sure you’ll benefit greatly from reading this info and adopting the lifestyle modifications which give around 40% of people great migraine control with no meds.
If that doesn’t work, or doesn’t work sufficiently I really don’t think there’s any need to be scared of the Topamax. A lot of people get great results from it. And if it doesn’t work for you then ditch it and move on. There are plenty more meds in the sea.
hope it helps.