Topamax for migraines

[luvwinnie]

Those of you who use it, have you had to increase your dosage? I've gone from 50 mg. to 75 and now maybe 100 mg.

 

[kydisneyfans]

My wife had to gradually increase it from 50 to 100-but then she lost her job as she started making too many mistakes and couldn't think straight. She went back to 50 from 100 and got off that medication as quickly as she safely could.

 

[daughtersrus]

Those of you who use it, have you had to increase your dosage? I've gone from 50 mg. to 75 and now maybe 100 mg.

My DD was on Topamax years ago for seizures. They had to increase her dose and it got to the point that we had to get her off it and onto a different medication because the side effects got so bad. Her Ped Neuro referred to it as "dopeamax" because the side effects are so common.

At the time, she was only 22lbs so maybe her little body just couldn't handle the medication.

 

[sparklynails23]

My friend has lost a lot of weight since she started taking it. I'm thinking of going on it, but I'll have to fake the headaches. J/K

 

[LuvOrlando]

They tried this for me and I couldn't stand it. Not only didn't it stop the very worst of my headaches but the fog my head was in all the time was unbearable. No matter how high the dose got I still had the very worst migraines and needed my Fioricet anyway so after a few months I stopped. I suppose it would have been tolerable if 100% of my migraines disappeared but getting rid of the ones I could tolerate anyway just didn't cut it for me.

I do hope it works for you, I have had migraines since Wednesday and am totally exhausted by them. I wish something would work for me

 

[BCV513]

I'm on 100mg for migraines, have been for years. I take 50 in the morning, 50 at night. I don't have any of the "dopamax" side effects. Of course, I don't have any of the weight loss either.

It really has worked for me. I was getting daily migraines. Now I'm down to about 2-3 a year. It's amazing. I still can't eat chocolate though.

 

[brittsmum1998]

I was on it for a while for neuralga. It gave me a personality dissorder. I was grouchy and got very impatient. It got to the point where it was getting a little scary. I went off it as soon as safely possible.

I hated Dh and was getting angry at dd for no reason. I'm fine now. It gave me minimal weight loss.

 

[MindyLuvsMickey]

I had been taking 50 mg years ago. Had to stop it before trying to get pregnant. It did wonders for my migraines. Never felt foggy. Never saw weightloss. I am planning on taking to my doctor again about it when I'm finished breatfeeding.

 

[ohiomom28]

I was on it for 3 days and spent the entire 3 days in bed with flu-like symptoms. I was in a complete fog! As soon as I went off of it, it went away. I have controlled my migraines now with a mixture of chiropractic/cervical traction & an anti-depressant & blood pressure medicine.

 

[mousermerf]

I have cluster headaches - think of them as the migraine equivalent of being hit in the face with a brick.

They come in cycles and have to be aborted with statdose shots of imitex (yay for sharp objects!) Problem is, even aborted they still suck and make being alive difficult.

So, topamax. Lots of it, and on a rapidly increasing dosage. I've been on ridiculously high doses in the past.

Numbness, tingling, loss of taste, being too hot or too cold or simply unable to even feel hot or cold, slurred speech, dizziness, general fog, and of course the forgetfulness and occasional roid rage.

Oh, and you have really vivid dreams and occasionally hallucinate.

That's all from going from lowest dose to max dose very quickly - again we're fighting time with the cluster headaches. Trying to stop a what could be a 3 month cycle of twice daily incapacitating headaches. You take a few weeks of not really being human.

But once the therapeutic level is in your blood stream the headaches stop and the side effects go away - aside from the forgetfulness, mild fog, and "personality adjustment"

It makes you grumpy, not gonna lie. Then you wait for the other signs of the headaches - we call them phantoms or demons (we who? the cluster headache sufferers of america) - to appear gone and then taper off the topamax.. carefully.. and go right back on if you incur a headache and try again in a few weeks.

 

[mousermerf]

Side note: carbonated beverages will taste horrible while you're on topamax.

 

[mousermerf]

*snip*

There are no magic pills.

 

[3smithboys]

I am on it and have been for awhile... I was up to 275 mg but the "dopamax" side effects were way too much! (But the migraines were WAY down - I was getting up to 25 a month - it was HORRIBLE)

I am now on 225 mg at night, and don't have the side effects any more. I started to get an increase in migraines again - no where near what I was getting before, but I didn't like where it was heading. So now I also take 15mg of Protriptyline in the morning. That has really helped...

 

[ClarabelleCowFan]

I had the horrid side effects as well. I was flying into rages with little provocation and even broke the solid wood front door by slamming it too hard. I loved the weight loss but hated the way the drug made me feel. My Dr called it the Super Model drug because it makes you thin and dumb.

Most recently I have been put on Zonegran for my almost daily migraines. The higher doses made me sick as a dog and after a few trips to the ER for the side effects I have weaned myself down to the minimum dose and knock on wood so far I am down to 1 to 2 very weak migraines a week (quite an improvement from 5 to 7 full blown migraines a week) without the side effects. Soda tastes almost normal on the lowest dose too if you can get past the initial sour taste.

Ask your Dr about Zonegran if you are worried about the Topamax side effects.

 

[Mic_n_Min]

I get daily migraines and am on 200mg of Dopamax, I mean Topamax, daily. It makes me a complete dope some days, but I am down to 20 migraines a month, which is surprisingly a good number compared to my record of 6 months straight of every single day of a migraine. I also take 2700mg of Gabapentin with the Topamax daily.

I did have the tingly hands and feet, but that has diminished greatly. Even the dopiness is getting better. I do have my moments though. Cannot drink a carbonated beverage of any kind. Weight loss- that has happened a little bit. Mostly a loss of appetite.

I am on the 200mg dose for now to see how it is working until I go back and see my neuro around the beginning of November. If it doesn't work any better than it is right now (and I haven't seen much of an improvement for a while now), then we are going even higher yet. I trust my doc. As long as I can handle the side effects and we think we are safely using the Topamax, we will use it. I cannot handle 20 days a month of full blown migraines. I need my life back.

Good luck to you!

 

[crz4mm2]

I did 100 then 200 and hated it.I could NOT think.. Couldn't remember the names of even common things (like doorknob) and people I had known for years...
I finally quit taking it too.

 

[KitKat_Tink]

I was on it up until a month or so ago. 175mg a day. I was to the point I couldn't feel my hands or my feet. I was in a constant fog and I lost 30lbs. It certainly did help my migraines in the long run but when i tried to lower my dose I got them back full force. So I got off of it. I sure get more migraines but I can think now. I also developed a twitch from it i believe (well the twitch started at the same time i started it, so it may be unrelated but I think not) where my whole body just has what I can only describe as a mini seizure. I'm glad i'm off of it. But the weight loss was nice.

 

[kacaju]

I loved it for the weight loss!! it did help with my migraines, but I got very weird effects from it. It made my hands and head feel swollen. Very strange. I would be driving and my hands would feel 3-4 times the size they really were. I had to stop taking it.

 

[mousermerf]

I get daily migraines and am on 200mg of Dopamax, I mean Topamax, daily. It makes me a complete dope some days, but I am down to 20 migraines a month, which is surprisingly a good number compared to my record of 6 months straight of every single day of a migraine. I also take 2700mg of Gabapentin with the Topamax daily.

I did have the tingly hands and feet, but that has diminished greatly. Even the dopiness is getting better. I do have my moments though. Cannot drink a carbonated beverage of any kind. Weight loss- that has happened a little bit. Mostly a loss of appetite.

I am on the 200mg dose for now to see how it is working until I go back and see my neuro around the beginning of November. If it doesn't work any better than it is right now (and I haven't seen much of an improvement for a while now), then we are going even higher yet. I trust my doc. As long as I can handle the side effects and we think we are safely using the Topamax, we will use it. I cannot handle 20 days a month of full blown migraines. I need my life back.

Good luck to you!

Have you considered statdose imitrex? You still need to nail down a preventative drug, but in the meantime it works better/faster then pretty much anything else you can take and has relatively few side effects.

 

[ohiomom28]

Side note: carbonated beverages will taste horrible while you're on topamax.

lol It was almost immediately that they tasted weird too....very flat