Lots of Meds -- Still Pain
 

I'm in my third year of polyneuropathy. There are many possible causes: stenosis is the most likely. Also, I was taking Amiodarone for heart arrhythmia for many years which is a very toxic drug. There is also a chance of pre-diabetic causes but I've tested out as only borderline.
I think I've tried all the various classes of drugs. I also used medical cannabis which helped but got in trouble with my pain doc for that. She and the state prefer I become addicted to opiates instead.
Currently I am taking the following meds:
Oxycontin 30mg a day
Oxycodone 20mg a day
Cymbalta 60mg a day
Neurontin 2400mg a day
Baclofen 60mg a day plus heart drugs.

I've tried Metanx, Lyrica, patches, Topiramate, et al. All did nothing. I'm very skeptical and leery of Neurontin but take it anyway. I am still in quite a bit of pain, especially in the AM and afternoons. I also have permanent atrial fib.

I can walk only a few yards until the pain takes me down. Sleep is really problematic. Shoes are a torture. Twitching, spasms, cramps plus all the other: burning, etc.
I also do acupuncture each week, adjusted my diet, take a B complex, Folic Acid and Vitamin D. Exercise of most any kind is impossible.

I am wondering if anyone has been prescribed Xanax, Ativan or Valium for PN and what the results were for your pain. Thanks for sharing. Joe

Amiodarone affects the thyroid too. Have any of your doctors,
tested your thyroid lately?

We have had a few people come here on Coumadin, who had significant PN pain. I've searched and searched this and always came up with "nothing" connecting to Coumadin. But I suspect it can be a culprit for PN for some people.

The Benzo drugs (like Xanax etc) do help with pain in the short run, but in the long run they tend to make PN worse, as they wear off. Klonopin is the one typically given because it lasts a long time in the body. It is really best to avoid them. They work like the antiseizure drugs, and do have some antiseizure potential, but are so habit forming! The body tends to circumvent them over time, so PN often gets worse and not better and you are left highly dependent on them, and getting off them can be a nightmare.

Thanks so much for your reply. Yeah, that's all I need: more meds to get addicted to. I'm at my wits end, though and I'm just three years into this nastiness. Hurry up PA and legalize MM.

I have a scrip for .25 mg of alprazolam (Xanax) for anxiety/panic (I seem to be extremely sensitive to all benzos) that I rarely use. Every time I have, it's caused my feet to burn for the next 24-36 hrs. Nothing helps except waiting it out.

Doc

Just one more voice warning against xanax/alprazolam: it is extremely difficult to get rid of it after longer periods of regular use (most docs put the limit at 6 weeks). It's one of the drugs where detox can be fatal. I have detoxed from it, and it wasn't a picnic. Also see: http://en.wikipedia.org/wiki/Benzodi...rawal_syndrome

"Borderline diabetic" may mean that you have insulin spikes/problems, and even if that isn't the cause of your PN, it may well contribute to the pain you are experiencing. You may want to look into eating habits that control your insulin levels. This is of course longer term, but you might be surprised at how beneficial this can be.

:I-Agree:

I test negative for diabetes according to every test taken multiple times. When queried, my neuro (specialist in PN) says I'm not borderline, pre-diabetic, insulin resistant, glucose intolerant, yadda, yadda, yadda.

Yet my body (PN) seems to respond as if I were diabetic, so I listen to my body, and follow those rules. When I asked the neuro about that, the response was, "Well, we don't know everything." OK, I can deal with that. :rolleyes:

A few times I've suggested someone try the same thing—eat as if they're diabetic and see if it makes any difference. Sometimes the response is, "But I'm not diabetic!" That's not the point—I'm not either. I'm a big proponent of, If it can't hurt to try it, then it can't hurt to try it. If it doesn't make any difference, no harm done. OTOH, if it does make a difference, at least they've found something that may help—even if only a little.

Doc

The medications out there for use in pain control and PN are not
very efficient. Some nerve pain does not respond to opiates well.
And Neurontin/Lyrica have only about 30% success rate.

People expect medications to work, and therefore are quite disappointed when they don't work well at all.

You may find lifestyle changes and using specific supplements taylored to your type of PN more effective.

I find topical use of Salonpas patches, or Liderderm RX patches, and magnesium lotion, all work pretty well for me. I also use
high gauss magnets for pain at night. (there is a magnet thread here if you search "magnets".)

Dr Smith actually brings up--
 

--an important point that bears repeating (and I'm not even talking about the point about eating more healthily even if one is not metabolically dyfunctional, as it wouldn't hurt to be even healthier).

Approximately one-third of peripheral neuropathies, give or take, can be traced to diabetes or glucose dysregulation. Of course, diabetes has a lot of other bad consequences, too. Many of these stem from the breakdown in circulatory efficiency caused by the overly high levels of serum glucose--specifically, the damage to blood vessel walls and their loss of resiliency. This is often referred to as an 'ischemic' effect, and it underlies many of the problems diabetics have with kidney function, heart function, and the like. As high blood glucose also damages connective tissue, almost any part of the body that involves transporting fluids through tubes--and, of course, that's most of the body (think digestion, elimination, etc.) can be affected.

In the case of diabetes, much of the damage to nerve seems to stem not from attack on the nerve tissue itself, but as the consequence of problems with the tiny blood vessels that nourish them, bring them food and oxygen, and take away waste products. Without getting into the complex chemistry involved too much (nitrous oxide pathways and all), it makes sense that if tissues can't get nourishment and/or if waste products build up in them, they don't function well.

Now, there are a number of other causes of neuropathy that seem to stem from this kind of 'ischemic' attack. In particular, a number of toxic and, especially, autoimmune causes of neuropathy--especially those that involve the anti-nuclear antibody autoimmunities that are characteristic of blood vessel and connective tissue disorders (a wide range of syndromes from lupus to polyarteritis nodosa to Bechet's to Churg-Strauss to scleroderma)--are known causes of neuropathy.

So, it seems that in people who are not diabetic, but whose neuropathy acts as if it is, it may be because the mechanism that underlies the neuropathy is similar--breakdown in circulatory sufficiency leading to 'starving' and 'poisoning' of nerve tissue. It follows that those steps that are useful in helping diabetic neuropathy by increasing circulatory efficiency and promoting healing of damage--which would include exercise, certain supplements, and a non-inflammatory and healthier diet--would also help other neuropathies in this 'family'.

That is very interesting: a good friend of mine suffers from microscopic polyarteritis nodosa (MPA) which was only discovered 10 months ago after an almost fatal renal failure. I remember repeatedly discussing PN - and nutrition in general - with her, and I'm now making a few internal "clicks".

The short of it is that we both seem to highly benefit from:

Dr. Smith, do you remember ever having your fasting insulin level measured back then?

In any case, it seems it's not unusual for some types of PN for the body to respond like you are diabetic, even if you are not. So if you are borderline diabetic like the OP, you might certainly benefit from a non-inflammatory diet - beyond the fact that you would just feel healthier.

Yes. I don't have the number handy, but it was well within the normal range—not borderline.

I'm already on a non-inflammatory diet as per The Intractable Pain Patient's Handbook for Survival (plus removing my own triggers). It definitely helps; I cheat on occasion (e.g. birthday) and pay for it the following day, but as my docs say, "Ya gotta live." :rolleyes: :o :D

Doc