Neuropath [ will never go away]

A forum to discuss personal experiences of Neuropathy associated with statin drug use.

Postby bucho » Fri Apr 13, 2007 5:47 pm

Poohel:
For several months after quitting the zocor I experienced random rashes and itching, especially on my arms. It was as if I had "walking poison oak," where a red and VERY itchy rash would raise up on my forearm, and an hour later it would be entirely gone with no itch remaining. The next day, it might come again, or maybe in a different spot. It was surreal, and I wondered at the time if it was the inspiration for the concept of "stigmata" (a whole 'nother subject...)! A year off the zocor, it almost never happens now, and if so, it's mild. But it kept going for many months on and off.

Biologist:
Fantastic news on your recent improvements! Based on this progress at 6 months, I'd place a wager on your full recovery. I fully appreciate what you have to say about the returning vigor. Everything good in life, every source of joy, hinges on one's health and vigor, as I've painfully learned. Hence, the damage caused by statins is inestimable.

I've become a "fan" of your developing theories and will stay atuned to your posts. Though I have no bio training, I think you're thinking along solid lines and I find your insights useful as I work the details of my recovery.

I'm particularly interested in your observation of unsteadiness under motion. We're in the same boat (middle-aged men who took zocor) and when my muscle injuries had healed somewhat, I found that my chest/arms would shake (about a 4 Hz tremor) under load while lifting the weight stack. The muscle injuries had forced me to lower the weight machine to miniscule levels (but I refused to quit!) and when I got the weight levels almost back to "baseline" (about 3x the level I'd been forced to drop to) I discovered the tremor. However, the good news is, about 2 months ago the tremor began to subside, and now it's nearly gone !!
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Postby bucho » Fri Apr 13, 2007 6:02 pm

Biologist (More on motor nerve issue): Having re-read your recent post, it seems to me that the central nervous system is indeed able to recover somewhat from statin damage. I too have read (in trying to trouble shoot my "pinched nerve" a year ago) that motor nerve damage causes atrophy of the related muscle, and eventual wastage. My experience is consistent with that.

Specifically, my left shoulder was chronically injured for about the final 6 months on zocor. Both shoulders had wasted away (little left but bone), but especially the left. Months after quitting the zocor, I was attempting to rehabilitate both shoulders on the weight machine, and I found that the left had by far the greater level of tremor (still has a little). But very gradually, both muscles have returned to at least "normal" size if not additional bulk and strength. And in step with this, the tremor has diminished markedly.

The key point is, this has been such a slow process that I had come to doubt there would be a recovery. Moreover, the degeneration occurred despite the fact that I never stopped my weight-lifting throughout the whole ordeal. And yet, now I am experiencing recovery and entering new levels of strength that I had never before attained! Now if I could just get rid of this tinnitus....
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Postby mgguy » Sat Apr 14, 2007 12:42 am

Biologist, thank you so much for sharing your wisdom about statin-induced nerve damage and regeneration. I plan to review all of your posts to get a full picture of what is happening. From what I've read of yours so far, it is apparent that there are no simple explanations or solutions, and sometimes what is true can seem counter-intuitive. Your explanation that the clearing away of damaged nerve cells is better facilated once statins are stopped helps explain why the burning and shooting-pain sensations in my feet have intensified and I am beginning to notice some new, similar, sensations occasionally in my hands. I think your insights will help me learn to take a longer-term view of the healing process, and to have more of a take-it-as-it-comes attitude rather than trying to interpret every single little physical sensation that I experience as I go forward. I actually think I can begin to relax a little and let the mysterious healing process run its course, however it happens. Thanks again for sheding some light on this very difficult and confusing subject. :D
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Postby carbuffmom » Sat Apr 14, 2007 9:33 am

Bucho:

How long did it take for your atrophied shoulder muscles to come back? I have been off of statins (zocor and vytorin) for about 16 months. My shoulders and upper arms are still very skinny. In fact, I think the atrophy continued after the cessation of the statins. I still try to work out and have noticed the telltale tremors also. I do work out at a much reduced rate. I am afraid to stop totally as the atrophy may worsen. Any insight you may have will be greatly appreciated. DEB
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Postby bucho » Sat Apr 14, 2007 7:20 pm

I noticed the beginnings of recovery at about 4 months off. At that point, the main progress was that I was no longer having painful injuries appear the day after working out (very lightly). At about 6 months it became possible to move the weights up moderately (still very light relative to my pre-zocor levels). At about 9 months size and strength were definitely returning. Now (12 months) I'm almost up to pre-zocor levels and the muscle tissue is definitely returned and starting to get some bulk. But still some tremor at times. Based on this forum, I'm beginning to think the tremor is a major indicator of one statin damage mechanism.

One trick is probably finding the "sweet spot" between rushing the process too much on one end, and not pushing hard enough on the other. One tip I found helpful: I only work any given muscle group one time per week. On Satudays I work out the shoulders. I think the muscles need a longer recovery time than pre-statin. So if I work them too often, they seem to develop an injured condition because they haven't fully recovered since the last workout.

That said, I imagine recovery time will be highly contingent on how long you were on what dosage, and other things to do with each unique body chemistry.
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Postby carbuffmom » Sun Apr 15, 2007 9:32 am

Thanks for the info. I think I may be pushing things too hard. I try to work out every other day, but perhaps doing all muscle groups in one day is too much. I work out slowly at Curves, using hydraulic machines. I was on statins for 13 years, so I know I have a long road ahead of me. I do appreciate your response and I will try to do as you have suggested to see if it makes a difference. DEB
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Postby Biologist » Sun Apr 15, 2007 8:04 pm

There have been some good observations in this thread in the last few posts, in my opinion. I will have some thoughts here before long including what my doctor had to say about my arm tremor a couple of weeks or so ago.

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Postby bucho » Mon Apr 16, 2007 5:40 pm

I'm very interested to hear your latest findings on the tremor.
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Postby poohhel » Mon Apr 16, 2007 6:22 pm

[quote="Biologist"]There have been some good observations in this thread in the last few posts, in my opinion. I will have some thoughts here before long including what my doctor had to say about my arm tremor a couple of weeks or so ago. Biologist[/quote]

just as Bucho said...I too am interested in finding out... because my right arm seems to be getting a tremor during any form of exercise. It even starts after typing on the computer and last for about 2-5 minutes. For the last two weeks, since stopping Vytorin, every night when I settle into bad and start to relax... my body starts quivering/shivering from head to toe (mind you it's 80 degrees in Vegas this time of year) for about 15 minutes... I wrap up in a blanket and curl into a fetal position trying to stop the shivering/quivering... but nothing seems to make it stop any sooner. Does/Has anyone else experienced such a thing?
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Postby cjbrooksjc » Mon Apr 16, 2007 9:32 pm

poohhel: I used to think it was the A/C unit vibrating or something in the dishwsher out of balance and shaking the bed somehow (although we are on a cement foundation). It actually felt like (in the servivce I spent a lot of time on destroyers) the engines of a large ship shifting into some sort of combat manuevre that sent a tremor thru the ship and all aboard. I finally realized it was me, and I have absolutely no explanation for it. In retrospect, it's like every nerve in my body was vibrating for a time, and it was almost audible. I've been off the Statins for 7 mos, and it still happens on RARE occasion, but it IS RARE now and getting rarer; I had almost forgotten about it. I think I have forgotten about MANY small things like this. The symptoms do (for me) diminish after a few months; it took at least two and one half months before I noticed any real change. It's a long road to recovery that we all expected to be so much shorter. Keep positive!

Regards,

Brooks
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Postby bucho » Tue Apr 17, 2007 5:32 pm

This quivering/shaking sensation has been a major problem for me and still continues to this day, although at a lower level than before. For me it has taken three forms:

1) A constant jaw tremor (teeth chattering) 24-7;
2) Muscle tremors under load;
3) A very disturbing "pulsing" sensation throughout my body when lying down and trying to sleep.

Also occasionally muscle twitching (fasciculations). The pulsing sensation has been the worst of these, and has caused me to rely on Lunesta every night for the past year in order to sleep. There is no physical tremor (my wife can't feel it at all) so it's strictly sensory, and it started up about 1 week after I quit zocor (now off zocor for a year). It feels like a 4 Hz frequency (4 pulses per heartbeat) and it intensifies as I'm falling asleep, often preventing me from falling all the way into sleep. When at its worst 11 months ago, my vision also pulsed in lock-step with this sensation, like somebody was rapidly twisting the "brightness" knob. My particular hell was trying to keep a full-time engineering job while lying awake until 4 AM every night. Fortunately the pulsing has diminished a great deal, but it's still there some nights but at a level low enough that the Lunesta can usually prevail.

While I've experienced a great deal of recovery on many fronts, it's beginning to look like I'll have the jaw tremor and tinnitus forever -- but I'll gladly take these over the debilitating things that I had to endure until a couple of months ago. Still can't keep my mind focused on any particular task as long as I used to pre-zocor. That's not good.
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Postby Biologist » Tue Apr 17, 2007 8:51 pm

I think well of my doctor. I have an unusually low "contempt factor" for him compared to most when it comes to professional statin ignorance. While he still has a lot to learn about "statin reality," he's more likely than most to change, in my opinion. He's not there yet, but it is just a matter of time. It will happen. (Hell, it better -- eventually it will be a Very Open scandal!) I told him I think he's on his way to being "well ahead of the curve" and believe he will look back on that with some satisfaction in the future; and I've told him straight out that "the gig is simply up on statins"; it's just the massive institutional and commercial inertia behind it all keeping it afloat. (Well, that and the frenzied TV and magazine advertising going on nonstop.)

Time is always tight on his schedule -- 15 minutes or so per patient? And part of that time is me giving him info on what I have found out about statins and my ongoing experiences with the aftermath. Basically I had one question of him when I went in for my last visit (and first visit since the day after I hurriedly took myself off statins). I thought it out in advance on the way to his office. It was a deceptively simple but "loaded" -- distilled down to core. Here it is: while showing him my left arm tremoring under motion (4 - 8 hertz seems a reasonable approximation) and under no load (btw, with "a load" of a few pounds, there is little detectable tremor!) as if I were doing a negative arm curl (i.e., lowering the forearm from the curled position -- as opposed to raising it where the tremor does not appear):

"Have you ever seen anything like this get better?"

That answer would tell me a lot.

As I recall, he answered the question with a question, which makes sense. A little later, after discussion, I asked again (I had already considered that I should be persistent here with "The Question.")

It is possible I asked him a third time but do not remember exactly. I had suggested it was perhaps ALS-like in the meantime.

When he answered the question -- where I perceived that he would rather not directly comment -- he admitted that he had never seen it before and did not know what it was, and a little later added: with the exception of with Parkinson's patients.

He asked if I currently had health insurance in place (I am on and off again with it -- now off). I'm suspect he was going to recommend seeing a neurologist. He had performed the most impressive forearm reflex exam I have ever had or heard of. (BTW, as I understand it, reflexes are a direct circuit from point of contact with "the hammer" to the spinal cord and then directly back to the "point of action" -- amazingly, the brain is omitted from the circuit completely.) I did not know there were that many places to illicit a reflex response on an arm (hell, maybe he just could not find what he was looking for or I was not "cooperating" well enough -- but chances are he knew what he was doing). While I did not specifically ask, I got the distinct impression that he found nothing of interest.

So, I researched Parkinsons a little bit -- I now know just enough to be dangerous, so keep that in mind with the following: What I have is apparently not any classical form of it. That condition is not characterized by "under motion" tremors, but resting tremors. (Later, some small percentage will get action tremors apparently, but after a time of passive tremors first -- for months or longer.) So the message is: He did not know what it was. Which is fitting for a statin diagnosis in my experience here. I do not totally write off a potential Parkinsons-like mechanism for the tremor though, and that would be the dysfunction of cells in the brain that produce dopamine -- a neurotransmitter. Now that's a new one for me: not nerve damage, as such, but supporting cells that produce the "connectivity juice" for the nerves!

In the future, depending on how things go I may consider suggesting a test where we dose me with the precursor supplement (L-dopa, I believe -- along with a supporting compound I read about, which may be prescription) and see if my tremors subside for a while. That would be telling, wouldn't it?

In the mean time, I am going the way of others here and will try some strength training for a while starting this week. I haven't done zip for six months. And I do not have a physical job at all (while like you, bucho, statins have not been helpful for my thinking job one bit!). So I hope you guys (and gals) are right. I believe I am likely well off of the "sweet spot" in that regard, as bucho analogizes. DEB, I think you are right to take his suggestion of adding more recovery time, and I will be doing that too. (You never know, that may even be the reasons for my problems -- atrophy by lack of necessary rehabilitative training after such an "injury" -- not real likely, but certainly a possibility.) I will be very interested in hearing about your checkup in May. I have a special interest in your case and am sure rooting for you. Thanks for your comments, Brooks. BTW, I agree with your recent assessment of xrn's debating skills in the other thread -- he's kicking some serious butt, as we say here in the States -- but being so nice and professional about it at the same time!

Wish I had something more usable. In fact, I figured I better go ahead and get this post off so as not to disappoint for too long. Sorry for the rambling and lack of editing. But I will post on how the lifting goes and how the tremor goes over the coming weeks.

poohhel and mgguy, keep up the faith.

Everyone keep us posted.

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Postby Biologist » Thu Apr 19, 2007 9:03 pm

bucho,

Interesting news. I lifted for the first time in months just now -- pretty light workout with upper arms and shoulders in mind. The first machine was the "fly machine" (I think is verbally descriptive) for working out the pectorals. Oddly, I was immediately somewhat pleased that I was getting tremors in those chest muscles -- I was not expecting that and it was a completely new sensation for me on that machine which I have used for months prior to six months ago before I quit statins. Same thing with curls with dumbbells (mainly noticeable on my right arm though for some reason). In both cases there seemed to become a fairly predictable range in the arc for the tremors to start and stop which is the same phenomenon I noticed in my previously described situation (i.e., left arm; no load; on negative curls). The reason that I find this encouraging is that for the first time I am seeing a likely (or possible) comparison to your situation, and therefore possible improvement like in your case. You understand that the maximum downside for me otherwise is the prospects of progressive deterioration via an increased chemically-based (i.e., neurotransmitter deficit) condition (i.e., Parkinsons-like central nervous system supporting cell decline) or a "more typical" motor nerve cell dysfunction condition. If my left arm (and right arm to a much lesser amount) under no load is just a version of the same (temporary) physiologic condition that I found today, then there exists the possibility of "recovery" (again, as opposed increased problems over time). I can envision the possiblity that my tremor situation may actually improve rather than remain static as being the best case scenerio. Previously my guess was that it was permanent at best, and now I'm not so sure.

Obviously I noticed that I was much weaker on the weights -- which was not unexpected, but sure disappointing.

BTW, I did do an experiment about the time you posted on your nocturia concern some weeks ago. (My situation in that regard has been OK for some time, for some reason.) You said that it was worse after a hard workout. Several days after your post, as a test, I did a very busy day physically including walking four miles and "running" two miles on the elliptical machine. I felt tired and a bit fatigued later that evening but not too bad the next day -- until about mid afternoon when I crashed. I did not feel good at all. I was convinced that it was due to my exertion the day before but was surprised that I did not feel the affects on waking, but several hours later. One of the reasons that I have not posted on this before is that it is inconclusive since I had a bad toothache develop at the same time that afternoon radiating up into my sinuses (and subsequently had that far back molar pulled -- it's roots had previously been damaged by contact with a wisdom tooth I had to get removed 18 months earlier). The exertion that day may have caused the nerve in the tooth to become inflamed the next day and that could have been part of my malaise. Whatever the potential "cause and effect" relationship, or not, it was not a clean test to see if I am exercise intolerant in general or if neuropathy-like symptoms (including headache / malaise) are worse after exertion. I will do another test before too long with the tooth out of the equation.

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