Exertional Intolerance: Nocturia

[bucho]

I was on Zocor for 3+ years and have now been off about 10 months. Here's the main remaining problem and it doesn't seem to be getting any better -- maybe even getting worse:

Does anybody else suffer nocturia after an athletic day? Whenever I work out, I am then deprived of sleep that night by needing to get up and urinate about once an hour. This deprives me of sleep to the point I'm useless the next day. And even though it feels like my bladder is about to burst, the quantity each time is actually small.

If I don't work out, the problem goes away. I never had this problem before taking a statin.

[cjbrooksjc]

Bucho: Try a little Saw Palmetto before you work out. I got the night urination problem with Statins and that helped me... a few caps before you exercise, a few before bed... it couldn't hurt. I'd still get a couple of pictures taken though; just to be safe.

Regards

Brooks

[Biologist]

Bucho,

Yep, same here. I believe this is a type of neuropathy.

In my case it is after I wake up in the morning for the first time (I have long given up on sleeping straight through the night). Then it seems to be every half hour or so until I get up for good. Just as you described -- urgent need, but little results.

I cannot comment on it's being better or worse after working out as I have not started doing that yet. When I do, I will see if I notice the same thing and let you know. I make a point of not drinking anything after a certain time before I go to bed and that seems to help.

I have heard there may be a treatment for it, but if you are like me you're not real wild about more drugs. Brooks may have an interesting idea. But I have not even Googled it yet. It strikes me as an issue of "turning up the gain" on the sensory nerves.

I had a bit of a set back about two weeks ago on getting a cold. The cold was a good one but did not last long at all. Three days total. But on the last day of it, I drink three and a half beers. Starting the next day, my neuropathy issues apparently did not like one or the other or the combination. A still ramped-up immune response and/or alcohol are now to be specifically avoided for a while...

For instance, my left arm now has a noticeable "quiver" at a certain point in the arch on slowly lowering from a curl position. If I make a fist in doing it, it is less noticeable. I believe that is a new symptom. Also my vision blurred a slight amount and I got a noticeable case of tinnitus for the first time, along with some general malaise. This was after things had been going remarkably well for a while. I am now recovering. So, it is like you say, if I may paraphrase and adapt: "Slowly but unsurely" -- particularly with the neuropathy thing, as others have noted.

Biologist

[Biologist]

"A still ramped-up immune response and/or
alcohol are now to be specifically avoided for
a while..."

A particularly uncoordinated sentence, but maybe kind of fitting in a way, I guess. :wink:

Biologist

[Biologist]

Aww, hell. While I'm at it:

I "drank" three..., rather than I "drink" three...

And it is "arc" rather than "arch."

Biologist

[cjbrooksjc]

Biologist: Funny, I didn't notice any of that stuff in your text. Anyway, it's one of the things that irritates me about this condition: I think I'm getting well and it kicks me to the curb again. BUT, I begin to recover, and that's what keeps me hopeful. I have that quiver thing too, but it's (seriously) when I try to pour something (like a beer) into a glass/cup. Sometimes worse than others, and it seems to want to stay with me.


Brooks

[Biologist]

"Sometimes worse than others, and
it seems to want to stay with me."
--Brooks.

Yep, somehow I gotta bad feeling about "the quiver." I'm afraid it may be here to stay.

But who knows? Maybe gone tomorrow...

And so it goes.

One good thing about our chronicling our experiences is that others to come after us will have a better idea of what to expect.

Speaking of --

Hey, bucho, I will be interested in hearing how your kidney overload / impairment theory pans out that you mentioned recently in another thread. That sounds like a reasonable hypothesis to me. I cannot say for sure, but it is possible I may have noticed something similar the day after I ran pretty hard one day. I do remember I was feeling good the rest of the day, but cannot remember if it was the following day that I was fatigued or not. I will keep a watch out for that better next time.

Of course, if Statin Damage could be spoken / acknowledged, we could be handed the answer to the question -- like many others. Rest assured it is somewhere in the secret literature -- just safely locked in a double steel vault.

Biologist

[bucho]

Thanks to both of you for the feedback. Biologist, you mentioned three other problems that I also continue to have, specifically, tinnitus, blurry vision, and the "quiver." All three are triggered (along with nocturia and next-day fatigue) by exercise. The blurry vision and quiver are much reduced over their severity a year ago, but the tinnitus is only slightly reduced.

The quiver used to be a coarse tremor that I would experience during exertion. It would cause the weight stack to rattle, and was very unnerving. The blurry vision would come on immeidately at the end of a set of weights, and can also occur in the evening when I'm tired. At one point the quiver became so bad that it felt like my entire body was pulsing (about 4x my heart rate) just by sitting or lying down! (At that point my vision was also pulsing in brightness level, in lock step.)

I have found that alcohol can bring these problems back if not consumed in greater moderation than I would like.

I will see the new Dr in about an hour. Yesterday I hit the weight machine big time to make sure I have some observable symptoms today! Just hope they don't end up calling me Mr. Rhabdomyolysis! (In truth, I don't come anywhere near straining in my workouts -- since Zocor I hold back to the point it's not a very satisfying workout.)

I'll post the results of the Dr visit on this thread.

-B

[Biologist]

bucho,

I will be very interested in the findings. Your idea of exercising yesterday was excellent.

"The blurry vision and quiver are much reduced
over their severity a year ago, but the tinnitus is
only slightly reduced."
--bucho

One of the causes of tinnitus (per recent online reading) has been described as "the gain being turned up" on the sensory apparatus in the ear for one reason or another -- drug side effects being a noted example.

Regarding Nocturia, I wrote the following:

"It strikes me as an issue of "turning up the gain"
on the sensory nerves."
--Biologist

It is from my reading on tinnitus that I got that analogy. And if the analogy is fitting for either or both (i.e., tinnitus and/or nocturia), the idea now seems to be to try to "turn down the gain" so that more stimulus is required before nerves fire -- and in this case, to report a full bladder. I can see a potential answer to the concern that the nocturia could be getting worse even while overall neuropathy issues may be improving. Nocturia may only be more noticeable and problematic (e.g., sleep disruption) at night while the state of nocturia itself is ongoing at all times (i.e., day and night) to some degree or another (regardless of aggravation after exercise). This being the (possible) case, there would be a feedback cycle established over time where the muscle itself (i.e., the bladder is no doubt a muscular expandible "container" for forceable expelling by contraction) shrinks in size as it no longer ever gets full (since the nerves servicing the organ signal too soon prompting a bath room visit). The nerves adapt to the smaller size whereby increasingly diminished accumulated volumes are needed to trigger a message to urinate. Postponing urination during the day, while uncomfortable, may stretch the bladder back out over time, or may force the servicing sensory nerves to adapt, or both. Just a thought.

Later on I may have a helpful revelation in this thread about my set back, but better get back to work for now...

Biologist

[cjbrooksjc]

Biologist: I agree with your postulation RE: High Gain neural response. While I have no medical background, I made a living citing problem causes and isolating a 'fix'. It's a practical skill that has served me well. All it takes is information, information, information to solve a problem. I read a post from a member who (to paraphrase) jumped out of bed because she thought airplanes from the local airport were landing on her roof - the sound was so loud. Now consider this: wires have insulation; so do nerves: neurons, axons, etc, they are protected by white matter, myelin, glial cells, etc.; they can short circuit if that protection is lost. Ever wonder why so much of the Statin Side Effect Scenario parallels the common indicators for depression (sleep disturbances, inability to concentrate, forgetfulness, sense of foreboding, tremors, exhaustion?) There has to be, at least it seems there has to be, some connection among these similarities. I don't remember enough of the process (too many yrs have passed) to recount it exactly, but it is primary brain function, and people with depression have trouble transfering impulses from one pathway to the next across the synapse due to a shortage of XXXXXX that are used to transfer the impulse and then are 'vacuumed' back in to the neuron. Do you remember what XXXXXX elements are; does this rambling make any sense to you at all? I am out of my element quite a distance, and am relying primarily on 'Kentucky windage' to hit the mark (even tho I'm not sure what the mark is)..

Regards,

Brooks

[bucho]

Okay, I saw the doc. He's a bit young and not very impressive, at least not on a first visit. However, to his credit, after I gave a brief synopsis of my Zocor experience, he volunteered that he will not even attempt to suggest an alternative statin!

He wondered if the nocturia is being caused by a prostate problem. So he is sending me for bloodwork, to check the prostate as well as kidney function, and to do a urinalysis. They will also check lipid levels, just for kicks I guess because no result will convince me to take a statin.

More generally, this doc believes severe statin reactions occur in "about one-percent" of prescribed patients. He said he has a couple of cases in his practice, formerly athletic, who came to his office unable to walk due to statins. So he isn't completely in the dark, although he doesn't seem to have the concept that statins may be undermining the health (e.g., cell integrity) of every user. He does believe that statin recovery occurs at "glacial" rates measured in years.

So the bottom line is that a recent MD graduate (1995) has a very limited view of the statin problem, almost viewing it like an "allergy" a small percentage of people have.

I plan to do the lab work next week (after another weekend of exercise). In the meantime, I'll make sure to "hold it" as Biologist suggests to expand my bladder, and try not to pucker too obviously during meetings at work!

-B

[Biologist]

Brooks,

I think you are right on the money. No doubt your XXXXXXX blank is "neurotransmitters."

Reuptake inhibitors, as you are likely aware, are the drug class that keep neurotransmitters free and available in the vicinity of the synaptic junctions. Seratonin is one such transmitter, but I believe there are several others. Seratonin, unless I am mistaken, is manufactored on-site from cholesterol, which is inhibited on-site by lipophilic statins (e.g., Zocor). You took Zorcor too, right?

And your idea about demyelination in MS (and maybe Amyotrophic Lateral Sclerosis --ALS, and similar afflictions) versus statin damage is probaly exactly right. But, perhaps, as well as attacking myelin sheaths (the cells that wrap around and insulate the neuron cells' axons) statins may also actually damage or kill the neurons themselves via depriving them of CoQ10. I plan to do some research on ALS before long as it appears to perhaps be more germane to statin damage than even MS.

I think Zocor users may have central nervous system issues (in addition to the common peripheral nervous system issues -- like pain in the feet that about everyone gets, including me) due to its availability to the brain itself via crossing the blood brain barrier. (They say some statins, like Lipitor, do not have direct access to the brain and maybe the spinal cord either -- the whole of the central nervous system.) Your thoughts on depression fall right in line, and depression can cause serious fatigue.

Wonder what type statin that poster was using who you cited. I remember reading the account, but not what statin it was?

Biologist

[Biologist]

Excellent.

Thanks, bucho.

Hey, if you're feeling real brave (or masochistic, I guess, if you happen to try it before a meeting), drink a bunch of extra water all day long to speed the process along.

Good luck!

I will be a guinea pig along with you probably starting tomorrow.

Interesting that "athlete" keeps coming up.

Biologist

[Biologist]

"He wondered if the nocturia is being caused by
a prostate problem. So he is sending me for
bloodwork, to check the prostate as well as
kidney function, and to do a urinalysis. They will
also check lipid levels, just for kicks I guess
because no result will convince me to take a
statin."
--bucho

Interesting.

Just in case the prostate and kidney functions check out OK and the answer(s) remain elusive...

Now I may be "way out there" on this theory, but we'll float it anyway just in case there is ever any supporting evidence for it in the future, however unlikely. I use to run cross-country in high school. The so-called "second wind." Not really sure what all that actually entails on a physiological basis, but partly it means feeling better due to the pain subsiding midway through the run. It is real. I attribute this to endorphins, or the body's natural painkilling opiate-like hormones / chemicals being released. Should you reach a level of exertion in working out whereby these chemicals -- which may serve to chemically lower the threshold of pain -- are being released, then they effectively "lower the gain" on pain. And perhaps on other sensory experiences. For instance, if an obnoxiously loud alarm bell were to go off during your workout (or airplane flying by, per Brook's example), you might prefer it to occur at the end of your workout rather than at the beginning. Your overall gain has been adjusted downward due to the endorphins circulating in your "system" / brain. It is not as likely to hurt your ears. Now, later, when these endorphins are all gone (i.e., dissipated, reabsorbed, metabolized, etc.), there may be a bit of a rebound effect (either naturally occurring or brought on by, or intensified by, a "temporarily" compromised / statin damaged nervous system). This would explain the nocturia after exertion without the kidneys or prostate being part of the equation. It leaves it all in the sphere of neuropathy.

Just a wild theory.

Biologist

[cjbrooksjc]

Bucho: Good luck with your 'discovery' endeavors. Hope you learn something you can (we can) use.

Biologist: Ah, yes, reuptake inhibitors, Seratonin, that's the ticket! Now all we need is a matrix the size of Vermont to plug all the possibilities into. Still, I think the 'neuropathy connection' is primary, and your 'wild theory' is just the product of a curious mind distilling of a lot of seemingly unrelated input to find a useful explaination - Keep it up!
And, yes, I was a Zocor (Simvastatin) casualty; so was the airplane poster, but she took Vytorin (Simvastatin and Ezitimibe (sp?)) I'm pretty sure her post is in the Vytorin subcat; something like tab62 or tab82; very recent.
Also, Do you ever wonder if one of the older anti-depressant drugs like Tofranil might not be useful; I think some of them focused primarily on neurotransmitter stabilization in the brain. I've NO IDEA how Xanax (sp?) or the other, newer ones are employed; they might be helpful as well.

Regards,

Brooks

[carbuffmom]

Biologist:

I have taken various statins for 13 years, the latter being zocor, zocor and zetia, and then vytorin, which pushed my symptoms over the edge. I was a fitness trainer and a runner. I began complaining of muscle cramps to the doctor. Was told to live with it cuz my numbers were really coming down. I then developed hand and muscle weakness. Had various blood tests and emg, etc. The neuro here has given me a diagnosis of ALS. I have no doubt that statins and extreme exercise have contributed to this diagnosis. I would be particularly interested to hear of anything you may learn about this. Dr. Beatrice Golomb at UCSD is doing a study on this also as so many cases have been reported to her. I have been contacted by her assistant and have asked to be made aware of the results. I, of course, will share anything that I learn.

I am seeing an ALS specialist in May. I continue to take the supplements reccomended here. I pray that I have statin damage and not ALS and that some day I may recover or at least not get any worse.

Thanks for listening. DEB

[Biologist]

Hi, carbuffmom.

I have followed some/most/all(?) of your posts. The fact that your symptoms do not seem to be progressing is a good indication (at least to me, at this point) that you are not a real "good fit" for ALS.

My bet is that you do not have it. What do you think?

I will be real interested in following your case and learning of anything you may learn from Dr. Beatrice Golomb. I will pass along anything I may learn over the coming weeks and months.

At this point I do not consider myself very knowledgeable about ALS, but of what little I "knew" even months ago the thought had crossed my mind that I might be on my way towards it as my left arm showed some slight "pathology" over a year ago. I think statin damage imitates ALS symptoms -- and may be physiologically the same, just without the progression once the statins are stopped.

Are you doing the acetyl-L-carnitine routine? If so, how long have you been doing it and at what dosage?

"...pushed my symptoms over the edge"
--catbuffmom

That's a good phrase for it. I might start using it.

Biologist

[carbuffmom]

Hi Biologist:

Thanks for your kind thoughts. I have noticed that my left arm is now beginning to show signs of weakness also. It was always more pronounced in my right arm. I get easily fatigued also, which makes me really nervous. I continue to walk a bit and do some exercise. I work out at Curves very slowly. I just try to keep things moving properly.

I have been taking L carnitine for about a year now. I added the Acetyl about a month ago. I take 500mg of each twice a day and I am thinking about adding a third dosage. I just don't know how much is too much.

I have also been taking 5 gms. of creatine per day as I notice some atrophy in my upper arms and shoulders. I have been doing this for about 4 mos. now. I really haven't noticed much difference. However, I did consult a chiropractor who changed my supplements. I gave his regimen a 3 month try. I started feeling the left arm weakness so I went back to my old supplements.

Hopefully my symptoms will stop progressing. I am anxious to see if the Acetyl will make a difference.

I hope someday we will all be back to our pre-statin health.

Thanks, DEB

[catspajamas]

When I was in the midst of my statin woes i went to Mayos...They tested me for every neurological disease imaginable...incl ALS, MS , to name a couple...all my tests were negative...it was then they looked into drug reactions...but not even up there did they suspect zocor...I know the weak arms feeling cause at times I couldn't put my arms over my head. the left side of my body would just cave in and I would fall..they discounted a stroke too...I am grateful that most of my muscle problems have improved(after 5 years)..but I am left with perif. neurapathy......

[Biologist]

Thanks for the info / updates, carbuffmom & catspajamas.

I guess I will wait until I know more about ALS to comment further, but will say I think the Acetyl is a good idea.

Biologist