A Warm Hello!

I'd wanted to write a quick note just to alert people to something I have found helpful over the past two days.

WHen I'd had my latest exacerbation...earlier this year, certain portions of limbs were severely affected. THey had burining and pain, in the least. My left half of my left hand had this horribly (just one example of an area); yet, this hand would also contiue to become spastic.

I cannot take systemic NSAIDs, as they enivitably cause me GI bleeding.
I do use a topical NSAID cream made up by a compounding pharmacist, however.

I have used this topically at places of bursitis, etc. Well.. my left hand and my right foot were buring so badly...still two night ago, I had used this cream , every 6 hours on these two locations. This immediately quieted the pain and the burning. Each, the hand and the foot, are much more tolerable, even after 24 hours of applying every 6 hours. It see,s the nerves were inflammed. (Note: Sometimes these areas seem to quiet down for awhile and I think they are healing and the..whoa! The severe burining starts all over again! Now I have started this approach.)

I will continue to keep a close eye on this.. but ..wow! What a difference!

Also, my initial epsisode of severe inflammatory neuropathy (after Depakote exposure) had startted with legs on fire and other limbs, areas of obvious nerve involvement.

As this had "quieted" some..as the pain had abated some... I had started rapid..ultra-rapid movement disorder. It was not a movement every 5, 10, 20 seconds, it was a movemtn evry second...legs hopping as though I was running and/or bicycling as fast as possible.

Mirapex, in a few doses, did not h elp this. It may help some.. it did not help me. This only gave he horrible side-effects. (I do not mean to discourage anyone finding this helpful. People are very different in their reactions to meds.)

NOw..the movements have slowed down...are a calming. Getting off of Mirapex has allowed me to sleep more. I have also found magnesium chloride helpful. (My doc is fine with the magnesium supplement. I am cautious with this...see Magnesium thread by MrsD to learn more about some of the issues involved in using this and other vitamins/supplements. First of all...consider safety! Very important! Learn the pros and the cons to adding any vitamin supplement..always.)

This helps with symptoms right now..yet, I realize it is not a "cure" per se.

FOr months, I was jumpy, jumping and sleepless...after the neuro exacerbation. NOw I am so sleepy.. I fall alseep standing up in stores (No mirapex opr other dopamne agonist involved).

Just a quick update and...wanted to relate the relief from placing a topical/transderaml anti-inflammatory directly on limb with burning nerves.

Hope everyone is experiencing some improvement?

My very best to all!

Many people use Biofreeze or a similar cream. Yours is an interesting approach and I'm glad you found something that works even a bit.

The burning! The burning is always with me to one degree or another. At least most of the time. There are times I don't feel it I suppose. When I'm distracted doing other things during the day. Right now I have anklets and shoes on and my feet are complaining. But there are times when I must wear shoes and today, with the wind chill at 40 degrees, is one of them. Had to go out to the store.

That brings to mind something else that often relieves the burning for a while at least. Cold. Ice packs, cold soaks...that type of thing. For me my bedroom is always as cold as I can get it so moving my most symptomatic foot to the edge of the mattress where it's cold really helps. Mutes the right foot pain as well. The cold feels *so* good!

Something in your post jumped out at me. You said that after exposure to Depakote you had an 'episode of severe inflammatory neuropathy'. As I'm in the process of finding out, if I can, what is causing my present neuropathy, my question is, can Depakote do this? I've taken this drug in the past.

Thanks.

I am as curious dennis11! I took Depakote back in 2001 or 2002 for quite awhile for occipital neuralgia/cervicogenic headaches. I was prescribed it when Neurontin did not sit welll with me. Boy, that would be something...to find out some of this burning came on from Depakote. I have just never heard of Depakote doing that. But if so, I certainly want to know more about it. That part of your post jumped out at me too.

and I cannot find Depakote/causing neuropathy link.

However, Depakote depletes l-carnitine and that reduces mitochondrial
functions. It also depletes folic acid.

There is nothing on PubMed to explain it...but there is one paper that
Depakote was not tolerable in the HIV community.

There are even papers showing it HELPS PN.

Of course, there are always things not reported...so there really is no
definitive answer.

Thanks for the info. Mrs. D.

Well, I don't have HIV so that is out. And you would think that Depakote would help rather than cause PN. I just know it did nothing for me for the ON except to make me even dizzier and sicker than Neurontin did. It would be something though to know if Depakote is a factor though. I know I went through every med I had ever been on with my Neurologist. And she just said nothing I mentioned, at that point in time, would have caused PN...and that list included Depakote.

I think the reason it failed in the HIV community is that the drugs they take
to suppress the virus....already damage mito functions.

Add in Depakote and it must have be additive. I don't think it is the HIV itself,
but the mix with the other drugs.

Interestingly enough, Depakote had caused a very intense episode of severe burning neuropathy for me earlier this year.

I was shocked to discover it was actually the Depakote, however, it had gotten increasingly worse with Depakote and improved with the discontinuation of Depakote.

The episode was so severe, I have intensive nerve damage left, after the severe burning had stopped. This was in all limbs and was spreading all over my body.

The neurologist I had seen while this was occurring had said he sees this quite often with Depakote and was quite sure the severe burning would stop once the Depakote was out of my system!

I have since had consults with 2 additional neurologists, they each also had made similar statements about Depakote antagonizing some neuropathies. All 3 of them had stated they often see this.

I had asked about the "viral" theory, as they had (all 3) mentioned this is possible (and in the case in some cases); in other cases of Depakote-activated/antagonized neuropathy, they have not been able to find a reactivated virus of any type (to date with all patients).

While there is clearly a viral connection in some cases, the viral "link" has not been (maybe yet) found in others. (This is just according to the three neuros I have spoken with.)

My Primary Care Physician has also seen this in patients; however, a primary care physician might be less likely to fully understand all of the potential implications as to why this might be occurring with Depakote.

A couple of other docs I know personally had also commented they each have seen Depakote occasionally "trigger/exacerbate" burning neuropathy with patients.

Also, interestingly, I would almost expect this drug to then be on the list of meds that might cause problems for those suffering from Charcot Marie Tooth; however, I do not see Depakote on that list, either.

Several years ago, I had used Depakote to try to control severe daily migraines. I did not have a severe burning neuropathy then. (I may have become somehow "sensitized" to Depakote through prior exposure? I really do not know.)

I do not know, nor did they, the absolute "mechanism" involved in every case.

I have learned I do not always have the same response to the same medications. I have also learned that I am very sensitive to many meds. Additionally, we can have any type of a reaction to meds, as we all seem to find out, sooner or later, even if such a reaction is not necessarily "documented."

I am sorry my response is not more helpful!

My Best to each of you!

the fact that Depakote can cause an "medication-induced lupus condition."

There may/may not be an autoimmune factor involved for some people where a Depakote reaction is concerned.