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Old 07-22-2014, 02:47 PM #21
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[QUOTE=joecarver;1025580]after trying gabapentin no help, Lyrica terrible side effects, decided to try supplements. started with R- Lipolic acid and Benfotiamine which have greatly improved my pains, didn't eliminate them but made life much better. Was surprised as I thought using over the counter meds, was a bunch of B.S.
Joe,
I tried gabapentin and it gave me palpations. Im on 350mgs of Lyrica with some side effects, lightheadedness, etc but tolerable. Lyrica after 18 mos at this dose is not helping. What terrible SE did you get with the Lyrica? I tried RLA didnt see a diff. I still take 150 mgs Benfotiamine after 2 yrs and I dont see a diff in my pain.. Glad these supplements have greatly improved your pain!!
How much RLA and Benf. do you take a day? What kind of symptoms or pain has it been helping. I feel like I have tryed almost everything and nothing is helping me with my burning, tingling and buzzing. I have I-SFN...
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Old 07-24-2014, 03:22 PM #22
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Marie I take 150 benfotiamine and 150 r-lipolic stabilized a day. On Lyrica I had periods of brain fog where I felt mentaly numb , periods of depression and sudden attacks of fatigue. I wanted it to work so badly I stayed on it too long and had a terrible time with withdrawl. I was told by neuros at Mayo Clinic it was SFN. When I asked my rhumotoligst about supplements he , said some people they seem to help, they aren't going to hurt you , so give them a try. I have reduced pain with them for sure. good luck
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Old 07-24-2014, 11:20 PM #23
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[QUOTE=joecarver;1084732]Marie I take 150 benfotiamine and 150 r-lipolic stabilized a day. On Lyrica I had periods of brain fog where I felt mentaly numb , periods of depression and sudden attacks of fatigue. I wanted it to work so badly I stayed on it too long and had a terrible time with withdrawl. I was told by neuros at Mayo Clinic it was SFN. When I asked my rhumotoligst about supplements he , said some people they seem to help, they aren't going to hurt you , so give them a try. I have reduced pain with them for sure. good luck

Joe, Thanks for your quick response! I really wanted lyrica to work too. I have been taking 350 mgs of lyrica for 18 mos now. I'm thinking of going off them bc they don't seem to be working. I guess I wont know unless I cut back. I know it will be a very slow taper. I am deathly afraid of the withdrawal symptoms. How long was "too long" for you. Are you off of Lyrica completely? You have SFN, do you take some kind of med for your pain? I take the same amount of Benfotiamine. 150 mgs of RLA would be to strong for me. Are you diabetic? I know these supplements help with Diabetic neuropathy. Mine is Idiopathic, came out of the blue, I am otherwise healthy..very painful and frustrating..mine was Dx by punch skin biopsy. Take care!
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Old 08-06-2014, 07:45 PM #24
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Marie, I did 150 mg for 2 months with no relief and moderate sideeffects, then moved up to 300 side effects increased right away. Held on for 2mo. thinking I have to give this time. I am off Lyrica completely, not going to sugar coat my withdrawl, as it was hell. No im not diabetic, but I have a thyroid condition, because of having a laryngectomy, have to have it checked often and it is always in the high end of hypothyroid range, so that may very well cause some of my SFN. Trying to get thyroid help is as bad as getting help for idiopathic SFN. Good luck just keep trying, hang tough, try any port in a storm, what is there to lose by trying.
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Old 03-08-2015, 12:55 PM #25
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Quote:
Originally Posted by joecarver View Post
I am off Lyrica completely, not going to sugar coat my withdrawl, as it was hell.
Hi all,

Just wanted to comment on the struggle with withdrawal symptoms. Many of the drugs being prescribed for neuropathic pain come with that charming little bonus. I was personally on a prescription of methadone for peripheral neuropathy. My wife had central nervous system issues and had a terrible time coming off of gabapentin, which she was on for 10 years. Unfortunately for her, it wasn't until after that experience that she came across "The Road Back"

Fast forward a few years, she was put on a prescription of amytriptyline and this time, when going off of it, she was armed with the knowledge of how to do it. "The Road Back" helped her alleviate the withdrawal symptoms and the same can be said for me now that I'm going off methadone (currently at only 2mg/day). The withdrawal for methadone has not been particularly difficult for me, which speaks volumes about how well this works.

For anyone reading this who is either about to go off their meds or already has done so, I would definitely recommend you do not do this cold turkey.

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Old 03-15-2015, 06:57 PM #26
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has anyone tried nueropathy clinics for foot pain thanks. i have trid just about everything. ajsam
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Old 03-17-2015, 02:56 PM #27
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Which type of Lipoic acid and Benfothiamine do you use? the ALA i tried gave me lots of stomach issues.
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