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

Blasterboy 03-08-2006 01:39 PM

Re: Calling all Topamax Users (topiramate)
 
interesting that Celebrex works on Nerve pain, I tried that early on before uping the anti on the opiates and it didn't seem to help. I might try it again though for a back problem soon and I guess it could have some minor effort on the nertve pain too. I often take Acetam' I think that's a great painkiller on top of the Oxy and I am a big believer in Ultram and so is my PM doc, he believes it is the only drug in this class that has proven properties for nerve pain treatment. I've found that Oxy on it's own is not too effective and Ultram on it's own not too effective, but mix the two and it really helps me, when things are bad!

davetheplantman 03-08-2006 04:34 PM

Re: Calling all Topamax Users (topiramate)
 
I forgot about ultram. It did work for a while, along with other opiates, but I was soon maxing out at 400 mg. People with nerve pain often don't respond well to opiates as you well know and require larger and larger doses of medications. I just hated it. We are the lucky ones for whom the anti seazure drugs work you do realize. I remember crawling into bed on sunny afternoons after the car accident and taking nyquil, trying to go to sleep just to avoid being awake because the pain was to great, endless days with no clear meaning. After reading some of your other posts, and some of the other drugs you have been on, perhaps in time this one might help you a bit.

Hey, type crazy meds into google and see what you come up with. Research these drugs and learn, they are quite fascinating.

Blasterboy 03-10-2006 02:26 AM

Re: Calling all Topamax Users (topiramate)
 
Awesome read, thanks for the advice Dave, I really enjoyed that. Actually I'm Adult ADD and am been treated by none medicinal methods, but I think Temporal Lobe problems can be an issue for ADD people and so maybe that's another reason I'm getting on so well with the Topomax. I must say though that since I upped my dose from 100mg to 150mg I've gone a little stupid again, still I know it will settle again soon.

I'm so pleased that I've finally found a drug that is helping the pain so much and I really am hopeful of getting of the Klonpin. I really don't wont to be a long term Benzo user and since I've only been on them 4 months and am now down to 1.5mg a day from 3.5mg a day since I started Topamax, I've good reason to be hopeful. :) Even if I can get down to 0.5mg a day in the next month that will be great!

Sunnycal 03-10-2006 08:19 PM

Re: Calling all Topamax Users (topiramate)
 
Blaster boy, sorry I didn't get back to this thread sooner. I'm glad it is working for you. My husband took 1/2 Lyrica and 1/2 Topamax for a week and then went on the full dose of Topamax the second week. That is faster than he has titrated up to other meds. He is still very sleepy and not eating much at all. (I realize that Topomax decreases your appetite, but this is ridiculous) For instance today, he had some yogurt and a banana at 2:00 when he woke up, and is now having a sandwich (7:00 PM) I think part of his light-headedness could be lack of food, too. He seems to be in slow motion, too. Someone said it could take a month for the side effects to wear off. If he went on it too fast, will it just take longer, or does he have to start over?
Sunny

Blasterboy 03-11-2006 02:39 AM

Re: Calling all Topamax Users (topiramate)
 
apparently it's very individual how we react to these medication, but surely the 4 weeks titration up to 100mg is there for a reason. I only got up to it in two weeks because I wasn't feeling after two the early doses at all (or bearly at least) and so I easily went up to the 100mg.) Generally I've found that I've titrated onto the anti seisure meds very easily, I've tried about 4 and had little problem with any of them as far as titratration and initial side effects go, but many people have awful and varied side effects, so it's far from my place to advice another on what to do with regards their titration, espesically given that he was mixing his dose on his upward titration, that way out of my league.

gingerweezie 03-11-2006 07:14 AM

Re: Calling all Topamax Users (topiramate)
 
Davetheplantman's got IT right about Topamax. You've got to give it time. I've been on it for over a year now and am taking 150 mg at bedtime and am hoping to increase that again this week. I take it for Migraines. I had the DIPPY and forgetfulness at the beginning and really everytime they increased my dose but not anymore. I'm blonde already so I don't need any help in that department. :) If I didn't take Topamax I wouldn't get out of bed in the morning. People are always going to post about the bad experiences but not always about the good ones. Carbonated beverages still taste yucky but that's ok I didn't need them anyway. Give it a try and I REALLY hope you find something that works for you. God bless. :wave:

Blasterboy 03-12-2006 05:12 AM

Re: Calling all Topamax Users (topiramate)
 
I've just start to get the pins and needles in my feet and hands since I upped to 150mg over the past few days. It's nothing I can't handle for the grace of the pain relief, but it a weird feeling!

lindiana53 04-05-2006 01:49 PM

Re: Calling all Topamax Users (topiramate)
 
Interesting discussion. I was on Topamax to control cravings caused by Cymbalta, an antidepressant. It didn't help that much, and at 100mg a day, the Top made me search for words--bad in my line of work. I went off of it. I have two pinched nerves in my back that cause pain when I stand or walk. I didn't get any pain meds from my internist, so after realizing that Tylenol and aspirin products don't seem to work on this type of pain, I decided to go back on the Topamax after a discussion with my P-doc. Interestingly, I don't have any side effects this time, and it's been a month. It may be helping a little. I'm interested to know how many people are using it for back pain, at what dose, and to what result.

Blasterboy 04-05-2006 01:57 PM

Re: Calling all Topamax Users (topiramate)
 
I'm up to 400mg a day now and not having much of a problem with side effects, just a little bit of "post pins and needles" in the pads of my feet. All soda tastes like crap! Anyhow I did have some secondary pain in my lower back that has gone since I've been on this higher dose, maybe it's been related, I guess it's possible; but the Topamax is mainly to treat the post surgery nerve damage on my Intercoastal nerve around my diaphram on my left ribcage.

BlueSteam 04-05-2006 05:02 PM

Re: Calling all Topamax Users (topiramate)
 
I had just finished posting about my own problem about my neck pain and decided to read this one. I've got nerve problems in my neck and lower back. It seems to me that the dr should have tried topamax with me a long time ago. I will mention it to the pain dr I see on Fri. I've been put on so many other drugs and I allready feel like I don't know if I'm coming or going. Now, I feel like there is some hope out there. :D

VA-GAL 04-06-2006 07:14 AM

Re: Calling all Topamax Users (topiramate)
 
I take Topamax and I was like you and never had a problem titrating up on it. I was able to move up very quickly with very little side effects. I am presently taking 100mgs twice a day. I take 100mgs in the morning and 100mgs at bedtime. I have little to no side effects. The only thing I have noticed is the food tasting bad side effect. And really the only thing I don"t like anymore is most sodas, cantelope, and some other weird things. Other than that the dopey side effects have all but gone. I have been on it for a while now. I too take it for nerve pain. I did not think it was doing much for me until I tried going off of it. Then I noticed a big difference in my pain levels and asked to go back on it. I have facial nerve damage from a previous surgery. So it does seem to keep the pain in check for the most part. In fact, I think I could probably go up on the dose again. I don't know if there is a ceiling dose on this med, I am sure there is. But I know most people have a lot of trouble with this med. I consider myself lucky to be able to take it.

Good luck with it. I am glad it is working for you too.

VA-gal

Blasterboy 04-06-2006 07:24 AM

Re: Calling all Topamax Users (topiramate)
 
I think 400mg a day is the ceiling for nerve pain, although I was thinking of asking my PM doc if I could trial past this as I've adapted so well to the med and managed to half my OXY and Klonpin intake, but recently I've hit a reality check with the meds on a flare up and the pain hitting hard, so I had to up them a little. I've been very reluctant to do this given how hard it was to reduce down, so that's why I though the Topamax increase might help. I wonder if anyone has ever been on more than 400 for nerve pain. I know epileptics and people with phsy problems go on much higher doses, but that's a different treatment regime altogether I guess......

Blasterboy 04-06-2006 08:00 AM

Re: Calling all Topamax Users (topiramate)
 
BTW, I'm beginning to wonder if this weight loss aspect of Topamax is due to the fact that some foods taste unpleasant. I find I can plough my way through some meals, but at least 50% of the time I find myself part way into a meal feeling a little nauseas and having to give it a miss. My missus thinks I don't like her cooking anymore, but I think it's the fact that my taste buds are screwed!!!

moomecat 04-06-2006 03:38 PM

Re: Calling all Topamax Users (topiramate)
 
I take 150 Mgs of Topamax as well but for Headaches..I have been on it for a little over two years with a little break of a few months in between there. (My headaches returned so I went back on) In a way I believe this pill is a godsend because my headaches are no where near as bad as they used to be and are so far and between. I do have issues with words coming out of my mouth sometimes as well & can see why people call this "Stupamax". I work for a pretty prominant company and sometimes when something very important comes up I feel pretty dumb due to that! It is not fun tripping over my words hahaha..I also suffer alot of fatigue due to the Topamax..
No weight loss on it though sorry for all of you who are looking for that! Although I did not have much if any to lose and am also on Zoloft (previously on Effexor) which made me gain a bunch of weight which I did get off w/ weight watchers. I am actually going to see my Nuero tomorrow because the fatigue is getting to be a bit much for me and am currently on my way down on the Zoloft (yippee) so it would be great to be pill free :)
ps...Pins and Needles will go away with time...
oh and Soda will once again become tasty for those of you who do like it..i have no issues now but do remember back when I started having those issues w/ the flavor. I guess it just takes time to adjust!
Keep smiling :)

lindiana53 04-07-2006 09:00 AM

Re: Calling all Topamax Users (topiramate)
 
Well, after I just posted about no side effects, I had a dopamax moment last night. Twice I couldn't retrieve a word I wanted; this isn't good because I teach. I'm not getting much, if any, pain relief at 100 mg. I wonder if I should ask to go up 50 mg. No other side effects at this point including, unfortunately, weight loss. I need some help with back pain, but it isn't serious enough to go on opiates. PT and yoga haven't helped, although I have great posture now.


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