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Just wondering what some MSers experiences with AED's used for neuropathic pain has been? Seems that the new medicine by Pfizer that is recommended for use in neuropathic pain makes my vertigo and balance worse. Any others that have had similar experiences? And regarding neuropathic pain,, what are some of the meds or things that seem to provide benefit without making one have that "disconnected from the body feeling" or is this just a trade-off for NP management?

I have neuropathic pain and am currently taking both Neurontin and Lyrica. They have started me on an antidepressant (Amytriptalin, or something like that} for my headaches. I asked to come off the Neurontin because I refuse to add any more meds without taking one away. My balance and vertigo have been worse lately too but it's hard to tell if it's the meds of just my usual symptoms and their fluctuations. My muscle tension headache is my worst symptom because when it flairs up, it is there whenever I am awake. Please let us know if you find something that works for you.
Terry
P.S I just looked it up and the new drug from Pfizer is the Lyrica I am taking, maybe that is why my balance and vertigo are worse.

I too am interested in what works for neuropathic pain. I take neurontin and it does make me feel somewhat disconected, but more importantly it does not relive the pain. Does anyone take something for pain in addition to Neurontin? My pain is worse in the evening and makes sleeping very difficult, like my legs are very sunburned.

Hi

If you haven't already given it a go, you might want to consider alpha lipoic acid (ALA). It's available OTC and was originally recommended to me by my pharmacist.

There was a small clinical trial of ALA in people with MS.

LA may prove useful in treating MS by inhibiting MMP-9 activity and interfering with T-cell migration into the CNS.

And, it's also been used for diabetic neuropathy.
Here is some general information on ALA. The site has a link to the diabetic neuropathy info.

Here are a couple of other abstracts on LA as a Potential Therapy for Chronic Diseases Associated with Oxidative Stress

Pharmacologically, LA improves glycemic control, polyneuropathies associated with diabetes mellitus, and effectively mitigates toxicities associated with heavy metal poisoning. As an antioxidant, LA directly terminates free radicals, chelates transition metal ions (e.g. iron and copper), increases cytosolic glutathione and vitamin C levels and prevents toxicities associated with their loss.

And, it may provide some relevant neuroprotection. Although this research pertains to diabetes, it suggests ALA might suppress reactive gliosis. I think that may be relevant to people with MS. Neuroprotection by ALA

Glial cells provide structural and metabolic support for neurons, and these cells become reactive to any insult to the central nervous system....This study suggests that alpha-LA prevents neural injury by inhibiting oxidative stress and suppressing reactive gliosis.

I take 1200 mg. a day, pharmacist recommended. I recall when I first started I thought it was quite effective taking away the "burn" in my feet. I no longer have that symptom. Yeah!

Another thing to keep in mind, unfortunately, may be "What is causing the neuropathy?" Here's some interesting (IMO) case study info on polyneuropathy and interferons. It seems like neuropathy might be a side effect of interferon for some.

No matter what, I hope you find something helpful. I remember this was a very irritating symptom.

Sharon

(There's also info on ALA in the Natural Supports section of ThisIsMS)

I suspect that one of the problems with helping neuropathy in MS is because of the interactions of the drugs.

Diabetic and fibromyalgia neuropathies are helped quite a lot by adding an anti-depressant (usually a tri-cylic of some kind). The same thing would probably hold true for MS, also, BUT the drug interactions when adding a tri-cyclic anti-depressant with the other type of drugs that are normally prescribed for MS patients, ends up prohibiting the addition of most tri-cyclics. SSRIs are prescribed quite often in MS for assistance with pain relief, but the SSRIs don't work anywhere near as well as a tri-cyclic.

I think it is a catch-22. And from personal experience with suffering greatly from a LOT of different kinds of neuropathies, it takes some real time of taking the drug(s) before you feel any real relief, AND before you get past the more minor side-effects (such as the dizziness, loss of balance, etc.) It seems like a lot of folks give up on the drug too quickly and don't tough out the side-effects to see if they get past them or not.

You don't always get past the side-effects, but USUALLY if the side-effect is just dizziness or a disconnected feeling, that will normally pass with time - sometimes it takes months of toughing it out, sometimes only weeks.

Oh, and yep.........amitryptaline is a tri-cyclic anti-depressant.

Hi cgarnhart

A site to visit that could make a huge difference in your life is CPn Help.com. It is increasingly our belief that we can regain our lives by treating the underlying infection that causes this horror. You will meet many there who are living proof that this can work.

Rica

Rica, thank you for your postings, but I have about reached my limit with your broken record approach to recruiting treatment-naive patients into the antibiotic regime with lofty promises and absolutely no realistic assessment or disclaimers that the treatment you refer to is highly experimental. Your recent claim in the introductions thread that people on the referenced website are "without exception better" has simply crossed the line and I refuse to allow this to go on any longer.

I understand your enthusiasm for your chosen treatment, and am thrilled at your, and many others successes with it. I also believe you personally stand nothing to gain by people trying antibiotics, and so you are publicizing your treatment out of your desire to help others-- a motive I applaud and embrace-- it is the reason why we are all here and why I have allowed this blatant self-promotion to go as far as it has.

As with all potentially viable treatments, we encourage exploration of antibiotics as an alternative treatment-- but to now begin to claim that everyone on this particular regimin is *without exception* better, is at the very least setting people up for disappointment, and more frankly, extremely irresponsible in light of the dearth of clinical trial data.

Even the very best of the best treatments do not work for all people (are all people who take aspirin for a headache *without exception* better? Of course not!), This is particularly true regarding a highly experimental treatment whose perceived success is based almost entirely on anecdotal evidence (and as with LDN will continue to be so, as expected, until a proper clinical trial is in place). From all we've learned, MS treatment will most likely be tailored to the individual and/or disease groups, and as such what works for one may not work for another. No one is saying antibiotics will *not* work, but no one should be saying that antibiotics *will always* work either.

We have always advised that it is important for each and every MS patient to explore *all* avenues of treament, experimental and "approved." You must realize that, particularly when coupled with this outlandish claim of 100% improvement, you are clearly abusing that privilege.

If you disagree with that assertion, simply imagine if every poster followed practically every member's introductory postings with a referral to their treatment of choice-- what good would that cacaphony do?

Everyone here knows where to find information on antibiotics, both here and elsewhere as I've permitted you to post what must be dozens, if not hundreds of links to your site. In fact, you well know that we sponsored the development of the antibiotic discussion in the first place, and the current story on the front page loosely supports the environmental cause for at least some forms of MS. But yet you still unfailingly paste-- in boilerplate, copy and paste, generic fashion-- the link to the homepage of your website into practically all of your postings, in a methodical manner that I as a webmaster clearly recognize as trying to raise the search engine ranking of the same... again, I don't question the purity of your motives, but you must well recognize and admit to your own egregious behavior.

Please immediately desist from posting links to the website in question, unless you have some specific content not on the homepage that is relevant to a discussion being had here (basically the rules everyone else follows for posting links). Otherwise, I will have to ask you to leave since it seems to me (evidenced by your half-hearted posts that serve little purpose besides mentioning the URL of the external site wrapped in a too-good-to-be-true promise of better health)--you no longer seem interested in contributing here asides from recruiting members to another site. Again, there is no lack of links to your site here as it is, which I'm willing to let stand if you alter your behavior moving forward.

There are many, many more people reading this forums than posting, and I feel a personal responsibility to prevent the inadvertent conversion of this site into a feeder for one particular regimin that even you must admit is *entirely unproven.* When we find the (a) cure, we'll be happy to do just that. As yet, we do not believe that is the case.

Thanks for understanding, as I know you will,
-a