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Old 08-12-2014, 09:32 PM #1
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Default Burning all over

I am burning all over. It starts in my mouth and tongue. Travels down my torso and goes into my crotch. I am on a total of 600 gabapentin and have no idea if it is helping. I burn everyday starting about 1 or 2 pm.
The only help is using sublingual Ambian which knocks me out. I have been on everything you can think of and all I got were side effects.

My neurologist says there is no cure for neuropathy. I am borderline diabetic not taking meds

Is anyone getting help from gabapentin?
Carol
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Old 08-13-2014, 12:24 AM #2
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Hi Carol,

I test negative for diabetes, but my body (PN) behaves as if I were. R-Lipoic Acid (RLA) stopped my burning (feet & lower legs) within a couple days. This is unusually quick for this supplement; it can take up to a month or two to work (if it does). RLA is also helpful for Burning Mouth Syndrome (BMS).

r lipoic acid for peripheral neuropathy

r lipoic acid for burning mouth syndrome

If it can't hurt to try it, then it can't hurt to try it.

Doc
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Old 08-13-2014, 11:09 AM #3
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What supplements do you take? Do you have a doctor that would understand how to help with nutrition and supplements? Integrative MD's?


If your doctor can't help, keep looking for another.
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Old 08-13-2014, 04:58 PM #4
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Default Burning pain

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Originally Posted by Sallysblooms View Post
What supplements do you take? Do you have a doctor that would understand how to help with nutrition and supplements? Integrative MD's?


If your doctor can't help, keep looking for another.
I tried alpha lipoid acid for months. It was just another pill to swallow and I didn't feel any different. I'm on 300 gabapentin 2x a day.
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Old 08-13-2014, 08:16 PM #5
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My Rheumy is having me try 1500 mg ALA a day, so far no change in the PN pain. You have to swallow a lot more pills when you are going the nutritional approach...
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Old 08-13-2014, 10:42 PM #6
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You have to swallow a lot more pills when you are going the nutritional approach...
Ain't that the truth!
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Old 08-13-2014, 11:46 PM #7
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Quote:
Originally Posted by bckay1 View Post
I tried alpha lipoid acid for months. It was just another pill to swallow and I didn't feel any different.
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My Rheumy is having me try 1500 mg ALA a day, so far no change in the PN pain. You have to swallow a lot more pills when you are going the nutritional approach...
Ok, I didn't say ALA—I said RLA, and the stabilized form at that, which is better absorbed/assimilated than ALA.

What's the difference?

rla vs ala

ALA can go bad; it's much more difficult for stabilized RLA to decompose/go bad.

100 mg. of stabilized RLA is equivalent to ~600 mg of ALA.

It's also a cuss of a good antioxidant.

B5 (pantothenic acid) can further enhance the effects of ALA or RLA.
A new combination for treating polyneuropathy.

While RLA stopped the burning pain from my PN, B5 reduced the rude jabs & zaps.

But perhaps most importantly, RLA has worked for some where ALA has not, just as pregabalin has worked (better) for some where gabapentin has not (or has stopped).

More pills to take/try? Tell me about it. I try to try something new every few months to see if I can find something else that will help. One at a time so I know what works & what doesn't (and so I don't go broke all at once!) Some things help—most don't, so I drop those and try another.

If you've tried stabilized RLA and it hasn't worked, I'm sorry. If you've only tried ALA, I think it's still worth a try—it can't hurt, there's nothing to lose, and possibly something to gain.

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Old 08-22-2014, 09:15 PM #8
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I tried alpha lipoid acid for months. It was just another pill to swallow and I didn't feel any different. I'm on 300 gabapentin 2x a day.
i am on Gabapentin too. The therapeutic dosage should be at least 1800mg a day. Even with this dosage, I dont get total relief but at least some. If and whn you decide to up your dosage, dont do it abruptly. It has to be adjusted gradually....please consult your doctor.
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Old 08-23-2014, 05:46 AM #9
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i am on Gabapentin too. The therapeutic dosage should be at least 1800mg a day.
Quote:
The usual effective total daily dose [of gabapentin] is 900-3600 mg, administered in three divided doses per day. Higher doses may be needed. Titration should proceed more slowly in elderly patients.
http://www.eperc.mcw.edu/EPERC/FastF...dex/ff_049.htm
Whatever it is, I think the recommended dosage for gabapentin (and some other things) is/may be too high. The few times I took gabapentin for my PN, 100 mg. was enough to stop the burning for up to 24 hrs. Back when I tried it for chronic pain I couldn't complete the upward taper—it fried my brain without providing any therapeutic effect (and there's some question that the damage was permanent).

I realize I may be the outlier, but I learned from those experiences and others to err on the side of caution when titrating medications. These recommended therapeutic dosages are determined by studies (Phase II, IIRC) done by Big Pharma (whose purpose is to sell more drugs—not less).

My DW also does fine on lower doses of gabapentin—usually 100 mg. (for fibromyalgia and/or cervical stenosis) and rarely (couple/few time a year) up to 300 mg. with bad flares. Since being on an elimination diet, she's taken almost none, and has been able to reduce other medications to a trickle as well...

We're all different, and 1800 mg may be the magic number for many/most—I just think it makes more sense to start low and stop when efficacy is acheived rather than assuming everyone is the same and scarfing down fistfuls of nostrums....

Doc
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Old 08-13-2014, 10:43 PM #10
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Originally Posted by bckay1 View Post
I am burning all over. It starts in my mouth and tongue. Travels down my torso and goes into my crotch. I am on a total of 600 gabapentin and have no idea if it is helping. I burn everyday starting about 1 or 2 pm.
The only help is using sublingual Ambian which knocks me out. I have been on everything you can think of and all I got were side effects.

My neurologist says there is no cure for neuropathy. I am borderline diabetic not taking meds

Is anyone getting help from gabapentin?
Carol
Hi Carol,
How long have you had the burning sensation. I was diagnosed in Oct 2013 I am a diabetic 11 and have a team of doctors. I take Lyrica twice a day, have a compound cream, and compound vitamin B's that were prescribed from my pain management Doctor. I also take the Alpha Lipoic Acid and other vitamins.

It is a misery but I found what cause it to flair the better off I was and am.

As long as my sugar is between 80 and 100 I hardly feel anything. I just spent 2 weeks almost with the exception of small discomfort pain free.

This was until I was going through a very stressful period and had an Apple maple Mega Muffin. Now I have the burning, legs ache, feet numb the whole nine yards. For me it's staying away from carbs that makes a hugh difference.

Neuropathy may a chronic disease but you don't have to suffer every day with it.

Just get the right Team of Doctors.
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