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-   -   Topamax, the Double-Edged Sword (https://www.neurotalk.org/headache/109241-topamax-double-edged-sword.html)

fattoush 11-28-2009 03:16 AM

Topamax, the Double-Edged Sword
 
I have tried Topamax twice. First, totally naively and under the guidance of a very famous Philly doctor who warned me of nothing and never listened to nothing. It was the nurse who practically saved me from suicide when I had reached 100 mgs and shared my thoughts. Of course, I had all the other side effects, severe weight loss, hair loss, words loss, jitteriness, insomnia.... but I was migraine free!!!!!!
I could never forget that. Nothing ever gave me that freedom after Topamax. So a few years later, with a much nicer neuro, a Pdoc on board, and a plan to titrate very slow, I am hoping I can do it. Any one got results at as little as 50 mgs and for a while? Your side effects please? I do get depressed at as soon as 50mgs but hope I can handle it better than migraine.

I've tried every other prophy, believe me please. I don't want to list them.

Am I taking a stupid step?

jana 11-28-2009 11:41 AM

Quote:

Originally Posted by fattoush (Post 594474)
I have tried Topamax twice. First, totally naively and under the guidance of a very famous Philly doctor who warned me of nothing and never listened to nothing. It was the nurse who practically saved me from suicide when I had reached 100 mgs and shared my thoughts. Of course, I had all the other side effects, severe weight loss, hair loss, words loss, jitteriness, insomnia.... but I was migraine free!!!!!!
I could never forget that. Nothing ever gave me that freedom after Topamax. So a few years later, with a much nicer neuro, a Pdoc on board, and a plan to titrate very slow, I am hoping I can do it. Any one got results at as little as 50 mgs and for a while? Your side effects please? I do get depressed at as soon as 50mgs but hope I can handle it better than migraine.

I've tried every other prophy, believe me please. I don't want to list them.

Am I taking a stupid step?

I got results with 25 mgs. I LOVE this stuff!! But, the 25 mgs only worked for about 6 months -- and I had to up to 50 mgs. -- which only worked for about 6 months -- had to up to 75 mgs. -- only worked for.........you get the picture. I am now on 125 mgs. Actually, I probably could have continued with the 25 mgs. and had break-through migraines 2 or 3 days a month -- and that would not be bad. I wanted it ALL -- NO MIGRAINES -- so, I keep on upping the dosage. I do not seem to be having ANY side effects at all. I also have Myasthenia Gravis -- and Topamax seems to relieve some of the muscle discomfort in my shoulders and neck.

I started out with the REAL stuff -- when it went generic, I switched -- no problems, works the same for me. Now, here is the STRANGE part -- I have HUGE problems with MOST meds -- Prednisone makes ME suicidal -- I cannot take most of the meds for MG -- so, it is REALLY, REALLY strange that Topamax gives me no trouble at all. I am MORE than a little ticked that I have NOT lost any weight -- LOL!!! And, it makes my hair and nails grow FASTER than ever!!

Did you DRINK enough? I drink water or weak tea ALL day long. Did you try SPLITTING your dose -- half in the morning and half at night? Did they check your blood levels to see how your body was metabolizing the Topamax? Topamax makes your body "acid". I take a Tums at night before I go to bed -- I wonder if that might help you? You might need to research a "low acid diet". I take MY Topamax IN the morning (best for me).

ewizabeth 11-28-2009 01:40 PM

Welcome to NeuroTalk Fattoush! :)

I took Topamax for a couple of years for migraines. I never took more than 75-100 mg per day but I still had to wean myself slowly off of it.

I cut down to 50 for a few weeks, then cut some of those with a pill splitter and I'd take 25 at night for a few weeks. Then I took them every other day.

And to my delight, when I stopped completely, the migraines didn't return! :)

Good luck and keep us posted!

jana 11-28-2009 02:11 PM

Quote:

Originally Posted by fattoush (Post 594474)
I have tried Topamax twice. First, totally naively and under the guidance of a very famous Philly doctor who warned me of nothing and never listened to nothing. It was the nurse who practically saved me from suicide when I had reached 100 mgs and shared my thoughts. Of course, I had all the other side effects, severe weight loss, hair loss, words loss, jitteriness, insomnia.... but I was migraine free!!!!!!
I could never forget that. Nothing ever gave me that freedom after Topamax. So a few years later, with a much nicer neuro, a Pdoc on board, and a plan to titrate very slow, I am hoping I can do it. Any one got results at as little as 50 mgs and for a while? Your side effects please? I do get depressed at as soon as 50mgs but hope I can handle it better than migraine.

I've tried every other prophy, believe me please. I don't want to list them.

Am I taking a stupid step?

Ok, talked to my sister -- who is on 200 mgs of Topamax a day -- and NOT suicidal, either. She is seeing a Migraine specialist -- a teaching professor. My sister thinks that something that you are eating may be contributing to the suicidal tendencies. Her doc told her that certain foods don't "mix" well with Topamax. You have probably already noticed that Cokes (sodas) don't taste "right" -- and sweets taste funny -- that is the reason for the weight loss. Ok -- we have noticed that cruciferous veggies -- like cabbage, broccoli, brussel sprouts, etc. -- make us "sick", now. Yeast really bothers my sister -- she has to avoid it completely (breads, pizza, etc.) -- I can tolerate some. You really may have to do a food journal -- and note HOW you feel after eating certain foods -- and go from there. The Topamax is certainly worth it to me. I haven't felt this good in a long, long time. I RAVE about this stuff every time I go to my regular neuro!

lisaa123 03-29-2010 12:40 PM

Side Effects
 
I took 200mg a day, worked my way up from 50 believe it or not and my side effects have actually been positive. Soda tastes horrible which is good because it is horrible for me. I have lost about 40 pounds which I needed and the headaches are basically gone. The side effects for me come when I try to go off it. I get really bad insomnia. I am trying to go off it now as I want to take less medication and am down to 25mg a day at night and have slight headaches but that is it. I started at 100 mg taper for a month. I guess it is different for everyone.

melxphantom 04-23-2010 09:32 PM

i take 200 mg a day for migraines and seizures. i have suicidal thoughts but im on an anti-depressant and anti-psychotic as i also have schizoaffective disorder.

its hard because i dont know if i am ever thinking something real...if its just a side effect of some drug...or an actual real feeling.

darlindeb25 04-25-2010 07:01 AM

If I recall correctly I was taking 175 mg for headaches, and it wasn't helping at all. I started at 25 mg, and worked up to the dose I was taking, maybe even 200, I can't remeber now. I changed neuro's and after evaluating me, he decided the Topamax was not helping me at all, am I was weaned off it. No change without it, no bad symptoms on it or off it...although, I have symptoms and many other ailments, so who knows which symptom belonged to which issue! I never lost weight on it either.:(

Vowel Lady 05-12-2010 09:59 AM

I had better migraine results at 100 mgs. but could NOT tolerate the side effects, which really upset me.
I lowered the dosage to 50 mgs. and learned to accept a certain number of migraines. At 25 mgs, which I have tried repeatedly, I get toooo many migraines and found that to be unacceptable.
Drinking lots of water and moderate exercise helps me overall.
Another thing that helps me with the cognitive dulling and mild depression (side effects) is a natural product abbreviated as "PS." YOu can get this at the health food store. Also check at www.iherb.com. It is well known for helping w/ memory loss and somewhat known for helping w/ mild depression. Double check w/ a holistic practitioner and/or your physician.

MdotDdot 05-26-2010 11:52 AM

Topamax works, and by works, I mean reduce migraine frequency and intensity by at least 50% roughly 1 month after being on a treatment dose. And it works in about 60% of patients who try it. This is the best of all prophylactic meds out there (BB, TCA, etc.). Unfortunately, 20% get side effects bad enough to not continue on the med.
It usually starts working at 100 mg daily. Increasing it from 25 mg every week until that dose has often been recommended to prevent major side effects from developing. But, some people get side effects regardless.
Patients who take it for seizures and migraines should be on at least 200-400 mg daily.
Some supplements are worth trying to help with the migranes. magnesium chloride is the best studied one (may help 50% of the time). Other herbs and supplement may be worth trying..as long as they don't break the bank and taken in moderation.
There are plenty of prophylactics out there, so if side effects are a problem, it is worth talking to your doctor about a different med. Of course, never hesitate to bring this up to your doctor.

kaysus1973 08-08-2010 07:49 PM

Quote:

Originally Posted by MdotDdot (Post 658276)
Topamax works, and by works, I mean reduce migraine frequency and intensity by at least 50% roughly 1 month after being on a treatment dose. And it works in about 60% of patients who try it. This is the best of all prophylactic meds out there (BB, TCA, etc.). Unfortunately, 20% get side effects bad enough to not continue on the med.
It usually starts working at 100 mg daily. Increasing it from 25 mg every week until that dose has often been recommended to prevent major side effects from developing. But, some people get side effects regardless.
Patients who take it for seizures and migraines should be on at least 200-400 mg daily.
Some supplements are worth trying to help with the migranes. magnesium chloride is the best studied one (may help 50% of the time). Other herbs and supplement may be worth trying..as long as they don't break the bank and taken in moderation.
There are plenty of prophylactics out there, so if side effects are a problem, it is worth talking to your doctor about a different med. Of course, never hesitate to bring this up to your doctor.

MdotDdot.......that is interesting about magnesium chloride. I will look into that. My headache specialist has me on MAGNESIUM OXIDE and it works well for me. Thanks 4 sharing...........it is always good to know what works for other people!


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