View Full Version : What do you think of taking Topamax for PN?
11-27-2006, 12:35 PM
My Neuro has me on Topamax, 200mg a day for it. I've been checking around and haven't found anyone else that is taking it. I was on Neurontin and I couldn't stay awake on it. Now I'm able to stay awake, but the pain is still at a level of 4-7 almost all the time!
Still working on this with my docs and all of you!
11-27-2006, 12:44 PM
I have never personally taken Topamax, but over the years, I have seen patients on the Chronic Pain forum and the Thoracic Outlet Syndrome forum discuss using Topamax for nerve pain.
From what I remember, most patients were happy with the Topamax in terms of nerve pain reduction... but as with any medication it doesn't work for everyone.
Do you keep a pain journal? That can help to be able to show your doctor your daily pain levels, how well the medications work (or don't work), any medication side effects, etc...
Pain journals have helped many patients on the chronic pain forum to commuicate better with their doctors and get better pain relief.
11-27-2006, 04:18 PM
I'm taking Topamax 100mg 4 x's/day for Peripheral Neuropathy and/or Arachnoiditis. It seems to work the best for me. We have gone through the trial and error route, and this is what we've come up with.
I'm happy with the pain relief I've gotten from Topamax, but we are all different. As you know, what works for one might not work for another. As an added bonus, since starting Topamax my migraines have been cut by 3/4, so it is a dual purpose drug for me.
Two months ago I started developing more symptoms in my ankles and feet, so we added another med. Just take it one day at a time.
Good luck with finding something that helps and keep us posted.
11-27-2006, 09:32 PM
Topamax is not one of the first line drugs for chronic pain. What have you been tried on so far? Lyrica? Neurontin? Cymbalta?
11-28-2006, 07:41 AM
my own experience here.
Neurontin...brain-dead brain fog! A lessening of the ongoing pain[too fogged out to know/care], but, no brain!
Topamax, well, got my mind back, but pain maintained a solid steady hi-tension-wire 'thrum'
FINALLY tried Keppra, another anti-epileptic/seizure med. It's worked for me, got the brain back...can talk and write in complete sentences. Have pain, but
lesser than topamax and can really TELL if I skip/miss one. Uppping the dose by one tab puts me back in that 'dead zone'. There mite/should be a 'stickie' about the different options for PN pain meds....there are at least 40-50+ of them. For me this was the lucky one? Each of us, have different med problems that make scribing meds more 'quirky', for want of a better word.
Hope this helps? Hugs - j
The best thing I've heard about Topomax is that many have said they lost weight using it. I've never used this med as I think it's yet another anti-seizure drug that the docs have seized upon to try and help us PNers. Many swear by drugs like Neurontin and Topomax but many also swear at them. Despite having sold over $3.5 BILLION worth of Neurontin, Pfizer gained FDA approval for Lyrica as a specific medication for the treatment of the symptoms of diabetic PN and many PNers - both "diabetic" and "idiopathic" - say they are getting good results with it. (FDA never approved Neurontin for this purpose and they were fined around $34 million for advocating it's use in the treatment of PN). My doc is saving samples of Lyrica for me and I plan to give it a try around the first of the year. I've gotten such good results from the Duragesic and Fentanyl patches that I'm relunctant to try it but if a non-narcotic will work as well, then why not? The only way to find out is to titrate the Lyrica and gradually reduce the patch.......and if it works I will let you know. I am concerened that Lyrica has only been on the market for a relatively short time so we do not know what the long term effects might be.
11-28-2006, 03:43 PM
I took it for 2-3 mos and lost my short term memory completely.
I'd never touch that drug again.
When I finally titrated down 'fast ramp' I felt as if I was awakening from a nightmare. The world was real again.
I'd forgotten to pay bills, doc appts (not my neuro or PCP- it was eye exam, throat culture) my grandchildern's names, birthdays, and you name it.
I wondered how I was ever able to work.
There were little post-its and notes on scraps of paper everywhere.
If I didn't write it down, it didn't get done.
I did lose 8 lbs, tho.
11-28-2006, 06:47 PM
I am on 200 mgs of topamax and it was doing good for reducing my neurapathy.Up until i developed new problems a few months ago!
The side affects have been hard to cope with.I do have short term memory loss.I also have a hard time finding the right words often and i cant spell worth a darn sometimes.
I went from 180 lbs down to 115 at one point.I have since put some weight back on..but we wont talk about that..:D
I had tried probably 5 other meds before i went on this one and decided to just deal with the side affects since it worked so well!!
11-29-2006, 08:37 AM
I am on 200 mgs of .........I do have short term memory loss.I also have a hard time finding the right words often and i cant spell worth a darn sometimes........
Neurontin & Lyrica will do that too!
"Neurontin Moments*, Neurontin Fog"
BTW, I titrated up to 350mgs of Topamax until I stopped - and titrated down
(I was supposed to go to 400mgs- but never got there)
11-30-2006, 05:48 AM
you were trying to say in the middle of a sentence, and that you're completely BLANK on whatever/all you were saying...
Just say 'Sorry, it's my meds, sort of like 'chemo-brain'.'
I'd experienced that problem w/both neurontin and topamax, not on the Keppra tho [yet-knock wood FAST!]. Since I've added new meds for other issues, I DO believe I've a sort of 'chemo-brain', in that the mix I'm taking makes some relatively inoccuous s/e's of any one med a non-issue, well, the combo seems to bring out the worst of them.
IF it's working, don't complain! Topamax is far cheaper than many of the alternatives. Topamax IS good for weight loss tho, I'd lost 20 lbs in the 3 months I was on it.
Good thoughts always = j
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