Anyone use Gabapentin or topomax

I am not sure if I have EM CRPS Autonomic sympathetic dyfunction

Has anyone used Gabapentin? Has anyone used topomax? I

Dear Chloe,

Whilst you waiting for LWE member replies, I wanted to let you know we have quite a few older discussions on Gabapentin and Topomax. Just put in search box and scroll through older posts.I mention it as I have just checked them out - they are very insightful.

Added a good article for you.

Stay 'comfortable'

God bless

mads

Topiramate Relieves Peripheral Neuropathy

http://www.medscape.com/viewarticle/457287

227-Painful_Neuropathiestreatments.pdf (126 KB)

Hi Chloe. I have tried gabapentin and lyrica without success but I know it has helped some people. We all respond differently to medications. If you are trying it I hope it helps.
Take care,
Alina

Thank You I am still trying to figure out how to navigate the site:)

If you have any particular questions about the site you can ask me if you like. If I don’t know the answer off hand I can find it for you :slight_smile:

Silly me, forgot to answer your question ;)

Gabapentin and pregabalin did not work for me. Saying that I do take low dose pregaba for anxiety. I also know a lot of people who find these meds help with neuropathic pain. Gabapentin ,it seems, is pretty much a wonder drug in diabetic neuropathy. Topamax or topiramate(UK) - again this drug did not work for me. Again, I know several EM'ers who say it eases things a little.Both these drugs are anti epileptics passed by FDA for general use in neuropathy , they are usually either /or , and usually not prescribed at same time. EM is not a one size fits all when it comes to medications, minimisation tactics etc.... I'm afraid it can prove a real case of trial and error discovering what works for you in terms of trying to be as 'comfortable' as can be..

I have CRPS and find that oxycodone for break through, morphine for pain is the best medication I have tried thus far.

Oh- you are doing brilliantly Chloe. You posted - thats fantastic :)

I echo Alina, any questions just ask one of the moderator gang .

Big hug

God bless



mads said:

Silly me, forgot to answer your question ;)

Gabapentin and pregabalin did not work for me. Saying that I do take low dose pregaba for anxiety. I also know a lot of people who find these meds help with neuropathic pain. Gabapentin ,it seems, is pretty much a wonder drug in diabetic neuropathy. Topamax or topiramate(UK) - again this drug did not work for me. Again, I know several EM'ers who say it eases things a little.Both these drugs are anti epileptics passed by FDA for general use in neuropathy , they are usually either /or , and usually not prescribed at same time. EM is not a one size fits all when it comes to medications, minimisation tactics etc.... I'm afraid it can prove a real case of trial and error discovering what works for you in terms of trying to be as 'comfortable' as can be..

I have CRPS and find that oxycodone for break through, morphine for pain is the best medication I have tried thus far.

Oh- you are doing brilliantly Chloe. You posted - thats fantastic :)

I echo Alina, any questions just ask one of the moderator gang .

Big hug

God bless

Hi.. Well I have CRPS as well I feel I just have a body out of control.. I have been on gabapentin 18 months but it is difficult to tell how n much it works as I have had spreading . I am trying to wean down to see then do the topomax to see. I have had no other pain meds ever,, just a mm relaxer prob will wean off of that to ,, I am sensitive to meds , I am not sure if any Drs. know what to do like you said just trial and error. I recently saw my derm the one that first wrote those two words on paper EM and CRPS but sent me to Neuro for EMG:( BAd Idea! I went back s I have had a rash on my left abdomen for a yr, went in 8 months ago and saw someone else that gave me a steroid cream made it worse so stopped it. Just went back in too for that and just sensitive skin, He said well it will be a lot of trial and error more error and you may just be helping someone else, He wants me to go to Mayo clinic

Mayo are great. Sounds a move in the right direction Chloe. I sympathise with CRPS. I have suffered from that for many years.Do you minimise the 'known' triggers for EM - ie: heat, fatigue, exertion, stress. How about 'cooling' tactics? Here are a few- more on my profile page.

1. wrap the flaring part in a sheet/cloth soaked in cold water and then position yourself under a cold air fan - on full

2. bio freeze topical gel

3. lidocaine topical gel

4.wear loose cotton/natural fabrics

5. stay as cold as possible - e.g. remove bedcovers, socks, shoes etc.

6.rest as much as possible

7. elevate affected area if possible.

8. use different types of fan

9. cool baths

10. chill pads 'chillow'

11. Eye masks/pads that you can chill and place on body parts.

12. Try to stay in even temperature .

Icing/soaking affected limbs is not advisable as it may cause further complications, such as nerve damage.

Big hug

x

Thanks for the cooling tips, Mads. I also take an enduracool towel to bed every night and just got an iso-cool mattress pad...night time seems to be the worst. I just weaned off the gabapentin I was taking for two months, as I have gained 12 pounds. It seemed to help a bit with the pain, but was not enough to keep me on it. Then, the neurologist put me on Lyrica...it didn't touch the pain for me. So, I too am waiting for my referral to be approved to the Mayo clinic & hope that I will get some answers. Good luck, Chloe. If you find anything else that works, please share.