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-   -   Calling all Topamax Users (topiramate) (https://www.healthboards.com/boards/pain-management/371563-calling-all-topamax-users-topiramate.html)

Blasterboy 04-07-2006 09:09 AM

Re: Calling all Topamax Users (topiramate)
 
lol, I've found the Dopamax moments go, even at my 400mg dose, given enough time. Although sometime, I just can't spell the easiest of words! Still so long as I have my mouth back I'm ok, given that I'm in sales and marketing, I have to spout a load of blurb all day and so I notice when there's a gab in the crap......

daylilyfan 04-08-2006 06:37 PM

Re: Calling all Topamax Users (topiramate)
 
I have been on this at least 3 years. I think it may be close to 4. First worked up to 200mg a day, then up to 300. Now, I go up and down from 150 to 300 depending on my pain level. I usually take 200... but since I have RSD now (since 8-05) I have been taking 300 more.

I get along very well with this med. I take it because I suffer from incredibly tight muscles that are very painful and have been so far resistant to every treatment I've been able to find for 30 years. Topamax has really knocked back the pain of it. Now that I have RSD, which is nerve pain, they think that because I was on Topamax when I got the RSD, it may have helped the RSD from really getting going full strength with me. Which is a VERY good thing.

I had the bad tastes and some pins/needles the first 6 months. Now, I do not get the pins and needles. I either do not have the unusual tastes anymore, or I have become used to it. The decreased appetite has also gone away, so the weight loss leveled off. I did not lose much with it, maybe 10 lbs. Perhaps because we were trying a bunch of anti-depressants for pain during these years too... and they make you gain.

A great side effect has been that I can't remember the last time I had a headache, and I used to get several a week from stress or tension and neck pain.

I have not noticed any "dopamax" problems, word searching or anything like that. On Neurontin, I was a mess. I could not add 1/2 and 1/4 and come up with anything let alone the right answer, and in my job I have to add fractions like that on the fly. One time going to work on Neurontin, I was at a stoplight and could not remember where I was going. That does not happen with topamax.

Good luck!

BlueSteam 04-10-2006 09:06 AM

Re: Calling all Topamax Users (topiramate)
 
I know I just posted for myself in my own post on my neck pain (jeez that sounds funny) and I am hoping to start the topomax tonight. Work comp did not reply on fri when I was trying to fill it--so I am hoping to get it today. My question is why am I taking Elavil an antidepressant and topomax both? Sounds to me from reading all the posts that this is quite common. Is it really for depression? I get a little uptight and angry, because of my situation, but I don't let anyone else see it. My tears are kept to myself. (Besides that if I cry it seems to make my headaches worse) I actually think I get more upset about my family not being more understanding and helping out than my pain. Talking to all of you has helped me a lot. So--what's the elavil for? I admit between the three, elavil, topomax, and flexeril, I think I am going to be a zombie. I am happy to hear all the positive outcomes for the tomomax and I hope it works for me too.

Blasterboy 04-10-2006 10:43 AM

Re: Calling all Topamax Users (topiramate)
 
I take Elavil 50mg before bed for seisuzes and to help sleep through pain, but it's nothing like enough to be a anti depreseant at that dose and I'm taking Topamax 400mg a day and I take St John's Wort. I don't feel like a Zombie at all.

lindiana53 04-10-2006 02:25 PM

Re: Calling all Topamax Users (topiramate)
 
I would gladly trade some slow recall for pain relief, but so far I'm getting the side effect and not the benefit. I can't exercise as much as I'd like because of back and leg pain, so I'm gaining weight, and the Topamax hasn't done anything to help this either. Neurontin was a nightmare for me. I couldn't keep the stuff down.

BlueSteam 04-11-2006 08:12 AM

Re: Calling all Topamax Users (topiramate)
 
I do recall the dr. saying that I should sleep well on the elavil. Maybe that's what it's all about. I have been so sleepy for the three days I've been on it. I have slept well the last two nights--finally! I did start the topomax last night, but my dose is low right now, and it sounds like I'll have to wait until my dosage is higher to get any results. Dr has me going up every five days, so on Sat. I'll go up again. I'm glad I've got someone ahead of me to follow!! I can't excersise either--It hurts my neck and back, and it never fails, I end up with a headache.

dixiepeep 04-11-2006 08:40 AM

Re: Calling all Topamax Users (topiramate)
 
[QUOTE=BowlingWendy]It's late so I haven't read all the replies, I don't know what I will be repeating. I have been on topamax now for almost 8 weeks for migraines and back pain (unknown cause) and nerve pain in the foot from a failed surgery. I tirated up to the 100 mg, which was good becuase I really struggled with the mental functioning side effects. My migraines and daily headaches are almost completely gone and the few I have gotten I was able to quickly and completely zap with Axert (like Imitrex). I still can't 'add in my head' without thinking about it and I still sometimes loose the word I am looking for, or forget a persons name, but it is getting better - really this side effect is that the medication effects my cognitive abilities and is why this drug has the nicknames of dopamax and stupamax. The tingly fingers and toes have finally ceased and I unlike others can still drink diet sodas as long as they don't come out of a fountain. I have done lots and lots of reading about this drug and understand that in time these side effects are normal and will lessen. 100 mg is the 'normal' starting dose for migraine prevention. I do know (from my reading but I am not a doctor and you should not act on my information - I also don't work for any pharmacuetical company) that you can go up to 200 daily for migraine prevention and other mental disorders (I will not go into this). People who take this medication for seizures I understand can go up to 400 mgs a day. I would encourage you to discuss with your doctor. I have read lots of boards and posts about this drug - I know all about the weight loss - to me it is a feature - to the drug makers it was a an accidental bug. However for me this drug has helped me greatly with the migraines and my foot pain, but not a whole lot with the back pain. Hope this helps - there is a great web page if you do a good on topamax (something like the good, the bad, the funny) - it is not the main page by the drug maker - very informative.[/QUOTE]

dixiepeep 04-11-2006 08:43 AM

Re: Calling all Topamax Users (topiramate)
 
Your post was more directed to what I take Topomax for. I still take a tiny dose. I take 25 mg but it has helped with Migraines comsiderably. I do have problems with words and I do hope it goes away because having less pain in my head and neck is great. I feel more calm. I do have a slight tingle in hands but not bothering me. I go see the doc again today. My appetite has not changed. Still drink a soda a day at most. Keep posting.

BlueSteam 04-11-2006 02:31 PM

Re: Calling all Topamax Users (topiramate)
 
Has anyone had any dizziness from the topamax. It's only my first day on it, and my third on elavil, but I have had a few dizzy spells today. Just napped for three hours. wow. and I'm still tired.

Blasterboy 04-11-2006 03:34 PM

Re: Calling all Topamax Users (topiramate)
 
dizziness is part and parcal of the reason why it's important to have a slow titration onto this class of drugs; I adapated really well to Topamax, but still had a little dizziness in the early days, it passed after a few days and then came back for a day or two with each of the 1st few titration ups. The sleepiness is nothing unusual also, I still get that, 3 months down the road, but then I'm on 400mg a day!

dixiepeep 04-12-2006 06:49 AM

Re: Calling all Topamax Users (topiramate)
 
I have not had any dizziness but I am at 50mgs. No side effects except being tired but hardly any headaches or migraines. Some spelling problems.

Blasterboy 04-12-2006 06:54 AM

Re: Calling all Topamax Users (topiramate)
 
my worst side effect on Topamax right through the titrations and still to this day 3 months in is that I count make calculations in my head!

dixiepeep 04-13-2006 06:18 AM

Re: Calling all Topamax Users (topiramate)
 
I have not noticed the lessened appetite but I am still on such a light dose 50 mg and I still like diet soda. I have always preferred diet. I am calm and rather sleepy which is better than being nervous as I was. My BP is Great and my migraines have lessened. My neck and back pains are less too. I sleep better too. No more Ambien.

BlueSteam 04-13-2006 09:47 AM

Re: Calling all Topamax Users (topiramate)
 
My dr started me at 25mg at bedtime for five days, Sat I will take two at bedtime for five days, etc., until I hit 100mg. It doesn't take much for me, no matter what I take. At 25mg I am shaky and nervous, and I have a strange feeling in my head, kind of a tightness. I quit taking the elavil last night, so I'm waiting to see if that was causing the dizziness. It got real bad yesterday. How long before it actually starts helping the headaches and pain? I know it will vary by person--but what is everyone else's experience?

Blasterboy 04-13-2006 10:35 AM

Re: Calling all Topamax Users (topiramate)
 
That makes so much sense! I start a meal feel hungry and a few bits later I'm feeling full, sometimes a little nauseas. I get this more often with my evening meal by which time I've had 300mg of my 400mg daily dose.

I not a big soda fan, so no big deal there and I'm glad to loss the weight that the Lyrica caused me to put on (about 14Ibs,) I've now lost most of it since going on Topamax and I don't crave sweets anything like I used to when I was on the other Anti seizure drugs!


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