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Old 02-25-2014, 12:40 AM #21
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Quote:
Originally Posted by Idiopathic PN View Post
I feel a little envious Doc, no RLA and yet no burning??? Yay! How do you that???
I don't know—I can only speculate. Perhaps I have a sufficient build-up/level in my system (if RLA does that—I forget) or that avoiding triggers may have something to do with it.

Long story ommitted, I resumed vitamins/supplements yesterday, including RLA. Burning/PN was not a factor.

Had a checkup today; doctor commented that I had good oxygen saturation in my extremities. I gotta think that's good for feeding the nerves in my tootsies.

Doc
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Old 02-25-2014, 09:57 PM #22
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That's great to hear doc!
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Old 02-25-2014, 11:37 PM #23
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Originally Posted by mrsD View Post
It was no problem for me today. (some days I am a bit busier than others, but today is good forPN o.) Don't worry about asking.

I am doing my CE for license renewal and the texts in the online lessons are just awful... full of propaganda and marginal statements (to placate drug companies I imagine). It is crazy making for me, as I have to take TESTS and repeat the garbage, and pay $$ so I can renew! Seems this batch is worse than last period which ended in 2012. I have to do 2 live seminars so only some is online-- of the total 30 hrs. Now that stuff makes me cantankerous! LOL

I am seeing some posts on the CMT forums about carnitine use.
So you could think about that anyway for yourself.
Best of luck with all your studies. But to my question on gabapentin. My chiropractor who knows a bit more than my PCP about vitamins. I asked him about taking B5 supplement to help nerves along with the gabapentin. He stated that the combo would cancel out the benefits of each. Mrs D you have a wealth of practical knowledge your input would be appreciated. BTW I take 3 to 5 300 mg gabapentin a day depending on feeling in feet. I realize this is not a great deal. I also do 30 mg of not rippling at night
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Old 02-26-2014, 07:45 AM #24
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There are no papers on this B5 and gabapentin interaction, on PubMed.

The reference I use, Drug Induced Nutrient Depletion Handbook does not list any nutrient problems, but it was published in 2001.

Ask your Chiro exactly what the problem is and make him/her give you a reference to look up.

Many medical people (including doctors) don't even know what B5 is. It is not common for people to take B5 separately....it is most common in the B-complex. It has been my experience that medical people don't know the numbers, as opposed to the NAMES of the Complex B's. For example, ask your doctor for the number for folic acid....and you will get a blank look most likely.
(it is Vitamin B9)

Sometimes medical people just say don't use the nutrient, if they don't really know the answer. Better to say no than the truth, I guess?

Here is a short monograph on B5:
http://www.webmd.com/vitamins-supple...8VITAMIN+B5%29
(no interactions listed)

and here:
http://lpi.oregonstate.edu/infocenter/vitamins/pa/
(nothing here either)
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Old 02-26-2014, 08:52 AM #25
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I spent an inordinate amount of time searching goggle scholar as well. I could find nothing with relation to gabapentin.

What I did find was more mentions of B5 being used to treat neuropathy than I have seen before, e.g.

Pantothenic Acid

Supplements That Help Treat Neuropathies (Part 1)

My understanding to date is that while B5 deficiency is rare, it sometimes manifests as burning feet syndrome which usually does respond to B5 supplementation (I've seen 250 - 500 mg/day mentioned more than once).

Other than that, I have usually seen it mentioned as an adjunct to R-Lipoic Acid (RLA) in treating diabetic peripheral neuropathy. Since RLA worked so well for me (despite all testing for diabetes being negative) I tried it anyway, and in my case it has helped more than RLA alone (mostly in reducing the zaps and jabs).

For other types of neuropathy, or without RLA, I do not know, but as there is no tolerable upper level intake, I don't see any harm in giving it a try.

-----
FWIW, my wife takes a low dose of gabapentin for nerve pain in her shoulder. She also has severe tinnitus. She tried a combination supplement made up of inositol, choline, & B5 for the tinnitus, and it has helped some. Since it was so expensive that way, she now buys & takes those components separately (and tinkers with the mix). With the small dose (100 mg) of gabapentin she takes, if the B5 were cancelling it out I think she would definitely notice it, and her pain level increase. It hasn't.

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Old 02-26-2014, 08:54 AM #26
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The Carnitine seems to have kept me awake even when taken early in the morning. I have not seen this side effect listed anywhere and I doubt that I am a special snowflake, but there is nothing else that I changed ( except the lower lunch time Gabapentin ) and I usually sleep pretty well. Even if the pain keeps me awake I feel sleepy. Not with this.
Physical therapy is not working out. Pain is higher, legs hurt all night, and I had a weird, new popping sound with soreness in my hip this morning. Light snow this AM so I cancelled for today.

B6 is contraindicated in people with CMT, was the chiropractor thinking of this?
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Old 02-26-2014, 08:58 AM #27
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Quote:
Originally Posted by Susanne C. View Post
I doubt that I am a special snowflake,
Oh, but you ARE, Susanne... You're OUR 'special snowflake'.


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Old 02-26-2014, 12:11 PM #28
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How much carnitine are you taking?

Starting at 250mg a day is best and titrating up as needed up to 2 grams a day is what the dose in the chemo treatments suggest.

While the carnitine will wake up sore muscles, and improve some metabolism, I never noticed much energy from it.

But decreasing gabapentin may be the real reason. Perhaps you were just used to the zombie effects before and now that they are removed, you notice that.
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Old 02-26-2014, 12:27 PM #29
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Quote:
Originally Posted by mrsD View Post
How much carnitine are you taking?

Starting at 250mg a day is best and titrating up as needed up to 2 grams a day is what the dose in the chemo treatments suggest.

While the carnitine will wake up sore muscles, and improve some metabolism, I never noticed much energy from it.

But decreasing gabapentin may be the real reason. Perhaps you were just used to the zombie effects before and now that they are removed, you notice that.
Interesting thought! I think I would rather not lay awake all night even at the cost of losing a few brain cells...the Carnitine I have is 528 mg. it was really dumb to add one and decrease the other at the same time. I should know better, I had a lot of chemistry in school! I have stopped the Carnitine, didn't sleep well last night but I was sleepy- pain kept waking me up.
I don't really feel like a zombie on the meds, never noticed much effect in that way. I just figure I will be on pain medication the rest of my life and I do worry about cumulative effects.
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Old 02-26-2014, 09:33 PM #30
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Physical therapy is not working out. Pain is higher, legs hurt all night, and I had a weird, new popping sound with soreness in my hip this morning. Light snow this AM so I cancelled for today.

Hi,
I just had an evaluation to start PT today. I am going to begin water therapy.
I was actually surprised at the the evaluation. I was aware that my muscles had weaken but did not realize how bad my balance is. I couldn't really stand on one foot without falling to the side. I knew when I kneel on one knee I start to tip over but I did not know it was this
bad. Is this very common in PN?
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