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Peripheral neuropathy

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Posted 2/22/2015 4:47 PM (GMT 0)
Does anyone take anything for neuropathy symptoms? My llmd gave me neurotin and trileptal and it seems to help, anyone else trying these? Wondering what experiences others have on these meds. I have read they can be a mixed bag.
Posted 2/22/2015 6:47 PM (GMT 0)
bump
Posted 2/22/2015 7:43 PM (GMT 0)
I've had a love-hate relationship with Neurontin.

Since starting Doxycycline a month ago I've had awful nerve pain, mostly in my hands.
Last week it was keeping me awake so I dug out the Neurontin my Neurologist gave me for sleep and migraines.
Not being able to tolerate much, I took 100 mg 3x per day for a few days.
It helped my hands almost immediately but the stuff turns me into such a weeping mess I'm already tapering down and off of it. I cried my way through the grocery store on Friday for no apparent reason. Not good! I'm not a really weepy person either, so yikes.

I always forget how depressed the stuff makes me. Hopefully you won't have that side effect but be on the lookout. My impression has been that the side effects of this drug are greatly downplayed. Many people seem to be caught by surprise.
Also, stopping the drug has to be gradual. Even at the low dose I was on, I felt sharp pains in my head the few times I discontinued it too quickly.
Anyway, I've returned the stuff to my medicine graveyard and marked it with a weepy skull and crossbones so I don't forget how lousy it makes me emotionally.
Hope something works for you.
pers
Posted 2/23/2015 12:47 AM (GMT 0)
I've been dealing with peripheral neuropathy for abt two years now, or is it 3? Started two months after I ended antibiotics. We initially waited to see if any other symptoms came back but when none did, I went to a neurologist. Mistake. Said it couldn't be lyme as it is cured easily. Duh. But went ahead with spinal tap (negative for lyme/ms), and skin puncture. Was diagnosed with small fiber neuropathy of unknown cause. Double duh. Never went back to him and he was my second neurologist, neither of which knew (or wanted to know) anything abt lyme. So now last year I started getting a strange sensation/pain in upper abdomen. Had endoscopy and colonoscopy and gastro found nothing and declared lyme does not affect gastro tract. Triple duh. So now I just live with it. If I don't take the neurotin every hours, my arms and legs burn and the spasm starts in my abdomen. I assume it's the lyme and am so lucky I feel well otherwise. I do worry tho abt the overall nervous system continuing to malfunction as I have now had severe ringing in my ear. Ahhh the blessings of lyme.
Posted 2/23/2015 5:31 AM (GMT 0)
I never had any luck with neurontin. Everyone is different. I have used lyrica for a while and it works just ok. It takes a week to get over the weird brain issues ( almost like you are drunk ) then I really haven't got anymore weird brain issues. Lyrica doesn't make my neuropathy go away just takes the edge off it. I am ok with that because sometimes it gets really bad so any kind of taking the edge off it is good in my book. I should note most of my neuropathy shows up when I am taking Bart meds so I just assumed it was always Bart caused. Also Turmeric Curcumin or Magnesium supplements can help with neuropathy.
Posted 2/24/2015 3:30 PM (GMT 0)
I've been having problems with my feet/toes (off and on for ~2 years). At one point my hands/fingers were also bothered. Oddly, these issues seemed to have gotten worse as my overall condition has improved. I was off Abx for ~1 year and then had a relapse. I spent the following six months on Abx but now just take herbs. Overall, I feel quite decent however my toes and feet have been terrible for the last month or two (although my hands have been fine). At one point I tried cymbalta and neurontin. Neurontin didn't work for me. I saw some minor improvements with cymbalta but stopped taking it a year ago when my insurance would no longer pay for it.

How did you know the pain was from peripheral neuropathy and not some type of vascular issue? Do you think it is worth seeing a neurologist? I've spent so much time/effort/money on MDs that I hate going if it isn't likely to be productive! Is Lyrica worth a shot?
Posted 2/25/2015 4:54 AM (GMT 0)
I feel the abx make my neuropathy so much worse. Kinda like a toxic reaction to such a high level of abx for months on end make my neuropathy flare. I have been to so many neurologist and recently did a skin bx to confirm Small fiber neuropathy, and the only thing they did was offer neurontin or lyrica. So what's the point?
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