Calling all Topamax Users (topiramate)

[trinity4Him]

Greetings all,

I have used Maxalt-MLT. which is the maxalt that you take if you get a migraine. MLT stands for melt which you place under your tongue so it goes right to your bloodstream. If I get a migraine, I reach for my Maxalt-MLT and it works within 30 minutes. It has been a life saver for me.

The regular Maxalt, that you take daily and is not a melt, did nothing for me. Topamax was good. I also took Toprol for a lot of years, started at 25 mgs, then 50 mgs, the 75 mg and when that wasn't enough, that is when I began the Topamax. I'm back on Toprol 25 now. It doesn't work too well, I can feel the nerves in my shoulder and a slight feeling on the left hand side of my head and eye. But the "Big Kahuna" hasn't hit me yet. I can actually control these with Excedrin. By the way, don't waste your money on the Excedrin Migraine, it is exactly the same ingredients and doses. They just added the word Migraine on the Excedrin packaging, which works just fine when it works.

About the word finding problems I am having. If I knew it was only there while I was taking Topamax and it wasn't a permanent side effect, I would probably not have a problem with it. But because I quit it 8 months ago and I am still having this problem of word finding, it is not a good thing. I have an appointment with a neurologist in a big city May 15. I hope they can help me. I work far away from home and leave the house at 5:00 am to catch a bus that takes an hour and a half to get there. Most of the time I try to catch a nap as everyone else does, but when I get to work, I have a hard time talking to my boss. He (and my husband) are extremely understanding and we play word guessing games a lot. It is embarrasing for me and especially when a stranger sits next to me on the early bus and begins a conversation and I can't talk. I seem "stuck up", but I just can't talk and don't want to embarrass myself. Maybe I am being too vain, I don't know, but I don't like it - at all. I want it fixed.

I am hoping someone else here has had the word finding problems and got it fixed. Through time, diet, sleep, pills, I don't care! I just want help. Thanks and God bless,

[DogMom22]

I too have used the MaxAlt one that you take when you are having the migraine - it is fast acting in and out of your system, no long term effects - I didn't even know they made a version you could take every day. it didn't work very well for me - actually I should say it didn't really work any better for me than any of the others in it's class Imitrix, Axert...

I had never heard of the word find problem or any other topamax side-effects staying with people after discontinuting topamax in all of my research - which was pretty extensive - although I am not a medical researcher and don't have a medical background - but I did read all the results of all the major tests they did on this drug. (I think if the weight-loss side-effect stayed after discontinuing this drug then there would be a huge black market for it, people would tolerate the side-effects for a short period in order to get long term weight loss - just an opinion). Anyway, I was glad to read in the last post that a doctors visit was going to occur to have the word loss checked out since it is occuring after the topamax was stopped and I hope that everything checks out ok. I would be interested in hearing from Bluestream where (in general) you had heard about long-term side-effects from topamax, I am curious especially cause I want to take it for a long time.

Also, I noticed something else about my topamax side-effects - the onesw that make me stupid now that I have had more time to evaluate and have been steady on 50 mgs for 3 weeks (down from 100, where I was dumber than a box of rocks). Anyway during the time I descreased my dose of topamax, I switched from a regular GP for my back pain from a GP to a PM and the new PM switched me from Vicodin to Percocet - pretty much the same overall dosage when you account for conversions. The PM also put me on Klonapin cause I have severe insomnia - the klonapin gave me nightmares and sleep terrors so I stopped that after a few nights. The percocet gave me slight headaches and aggravated my insomnia. On my next appt with the PM I got switched back to vicoden thankfully. Anyway, now that I have been back on the vicodin for a week or so I now realize that the word loss problem and the concentration problem and the basic dopamax side-effects are much less than they were on the percocet even though I am on a higher dose of vicodin than when I was on the percocet (even when you take conversions into consderation - this is why I switched from GP to PM, old dose from GP wasn't working anymore). So for me, percocet I think made my stupidness worse - it is interesting how the same drug can affect different people in different ways and how multiple drugs can increase side-effects of another drug you are taking.

I too have been in public and had the word loss or the wrong word come out - and have been a little embarrassed - but I just laugh at myself - I might even say something like my old brain just isn't firing right today and apologize that I can't get that word right today and move on. Usually I can get the person to smile - I move on quickly and don't make a big deal about it, I don't allow myself to give it enough time to really get embarrassed. I'm not posting this to try and say that I am somehow better than anyone who might have found themselves in an embarassing situation because of the dopamax side-effects - How I handle this type of thing just suits my personality style - before I took topamax I did stupid things everyday - so I am used to laughing at myself and finding myself in embarrassing situations. (I'm the one in the supermarket with a case of soda on the bottom of my cart that is leaking all over the place and I don't know it. I am the one who is standing at an automatic door cursing that it is broken and won't open and it's because I am trying to go in and I am standing in front of the door coming out and I don't realize it until I get hit by the door when someone comes out - this was before I was ever on any meds - you got the idea.) So I offer 'my way' as ideas that might help others cope with handling these situation as you get used to the medicine. And for those who are still tirating up - just a reminder that the side-effects might and likely will improve.

BlueStream, it would be good to hear how you are doing - I saw you were getting ready to go to 75mg but were wondering if you needed to go to 75 since your headaches seemed to be under control - just curious (BTW - 100 mg is the standard starting therapuetuic dose for migraines and from there typically the go up if it isn't working.)

BlasterBoy - I don't know how you manage on such a high dose... Then again everyone is different.

[Blasterboy]

Interesting points you make about the word lose thing. I was thinking about it and I do have many problems with it, but I'm a very self confident person and so I brush it off very fast; DogMoms post made me realise the difference with that. I actually do get my words in a mash sometimes it's sort of funny, but I'm a quite serious chap when talking and I move quickly on, with a smile if need be. Funny, how I just assumed I didn't have any problems, but actually it is that I've got used to them..........

I tell you what is really bugging me if the pins and needles in the palms of my feet. They are starting to wake me up at night! I hope this passes soon, it's awful when I have a spell; for anyone who doesn't have them it's like that feeling when your limb is coming back to life from pins and needles and it feels weird for a couple of minutes and in your legs you can barely walk. Well when this happens from the Topamax I start jumping about like I have Fire Ants in my socks and the feeling last for about 15 minutes, it sucks!

BTW, regarding the high dose, my head feels clear, I guess I have a tolerance to medications; it's allowed my to half my Klonopin dose and reduce my Oxycontin dose by a 1/3; I'm taking this medication for post operative nerve damage! Plus compared to the other nasty Anti seizure drugs that made me crave sweets, I've lose 12lbs in 3 months :-) and people with Epilepsy take much higher doses.

[curiousforever]

Originally Posted by Blasterboy

I tell you what is really bugging me if the pins and needles in the palms of my feet. They are starting to wake me up at night! I hope this passes soon, it's awful when I have a spell; for anyone who doesn't have them it's like that feeling when your limb is coming back to life from pins and needles and it feels weird for a couple of minutes and in your legs you can barely walk. Well when this happens from the Topamax I start jumping about like I have Fire Ants in my socks and the feeling last for about 15 minutes, it sucks!

BTW, regarding the high dose, my head feels clear, I guess I have a tolerance to medications; it's allowed my to half my Klonopin dose and reduce my Oxycontin dose by a 1/3; I'm taking this medication for post operative nerve damage! Plus compared to the other nasty Anti seizure drugs that made me crave sweets, I've lose 12lbs in 3 months :-) and people with Epilepsy take much higher doses.

I was put on topomax for nerve pain. Not sure what is causing mine. had to switch neurologists cause he quit taking my insurance. The second neurologist told me topomax CAN INCREASE nerve pain.

And it really really did - the knives in my feet were very painful...and all I have for pain is percocet...didn't help with that at all.

He took me off the topomax and put me on lyrica. Not sure if it's helping - going to detox off of it to see. But the painful feet is gone - sitll have neuropathy in them - but not anywhere close to what it was on topomax.

[Blasterboy]

Hi Curious,

I don't know whether you were relating your feet pain to my feet condition, but mine feet symptoms aren't painful, just somewhat unplesent.

I hope that the Lyrica works for you; I found that helpful, but not as good as the Topamax and the weightgain on Lyrica was too much in relation to the benefits.