Exertional Intolerance: Nocturia

A forum to discuss personal experiences and share information on statins and other cholesterol lowering drugs.

Postby carbuffmom » Thu Mar 22, 2007 2:36 pm

Hi Biologist:

No, I have not taken garlic or cinnamon since ceasing the statins. I did, however take Niacin in a complex recommended by the chiro. I did stop that about a month ago.

Thanks for the tip on the spinal tap. I will go armed with as much info as possible. I would like to request it as it seems a more definitive test. I am still working on increasing the carnitine.

Keep me posted on your arm. I know how frustrating it can be. Thank goodness we can vent here. Have a good one.

DEB
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Postby cjbrooksjc » Thu Mar 22, 2007 4:14 pm

Biologist: I found out yrs ago I was allergic to B3 when I grew hot, turned beet red, and my scalp started itching after taking it; that was at 100% RDA. The multi I was taking recently had a 500% RDA. It is VERY COMMON to have NIACIN sensitivity I'm told.
BTW, I'm a little confused... do all these elements (cinnamon, garlic; whatever) use the same liver enzyme pathway (CPY3A4, I think) used to produce COQ10?

Regards,

Brooks
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Postby Biologist » Thu Mar 22, 2007 4:38 pm

Brooks,

They all mess with the vital mevalonate pathway is about the best I discern.

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Postby adec » Tue Mar 27, 2007 6:27 am

It's only the essential oils of cinnamon that act as CoA reductase inhibitors, but they're fairly weak compared to statins. These essential oil extracts can even act as monoamine oxidase inhibitors (MAOIs,) for instance, Cinnamate. Although, as previously mentioned, they can also act as hepatic antioxidants, and help lower lipid peroxidation and free radicals... a very beneficial result, something that statins probably cannot claim. While the average cinnamon extracts will more often use the water-soluble Type-A polyphenolic polymers, compounds such as CinnulinPF.

But yes, there are many CoA reductase inhibitors to be found in our diets. Although, in such small doses, I personally wouldn't worry about the cholesterol inhibiting activity of even household cinnamon. Studies have shown as little as 500mg. several times a week of water-soluble cinnamon extract to be most effective in significantly lowering triglycerides, but more importantly, in regulating serum glucose levels. Anyone truly worried could always supplement with water-soluble cinnamon extract, or boil and spoon off the excess fats from their household cinnamon.

As far as niacin, as well, for some reason here it seems to get a bad rap... perhaps it's the flushing. :) But there are still far fewer risks than benefits to supplementing with vitamin B3 (B vitamins in general)... too numerous to mention. I've also written about the many wonders of niacin on this forum, if anyone wants to search. To effectively combat niacin's largest risk, or homocysteine, I'd probably also recommend the coenzymated form of folic acid, metafolin (l-methylfolate,) with its ability to cross the blood brain barrier. That it doesn't require enzymatic conversion would make especially absorption less difficult for older patients with fewer digestive enzymes. For this reason alone, I'd also recommend supplementing with digestive enzymes in general.
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Postby poohhel » Fri Mar 30, 2007 11:10 pm

I am confused... Am I reading that cinnamon and garlic are statins? Are we talking about the everyday cinnamon and garlic found in our foods or just strong concentrated doses in capsules or tablets?
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Postby adec » Sat Mar 31, 2007 1:35 am

****I am confused... Am I reading that cinnamon and garlic are statins? Are we talking about the everyday cinnamon and garlic found in our foods or just strong concentrated doses in capsules or tablets?****

Yes, this is in reference to regular household cinnamon and garlic, and their extracts, taken in larger doses. If I'm not mistaken ginger, turmeric, curcumin, capsaicin, and mustard can also act in some capacity as CoA reductase inhibitors. Although, making the comparison between household spices and chemically engineered statins might be akin to saying that a flashlight and the sun are both sources of light.

In fact, statins can be water and/or lipid soluble, and so can some of these household compounds and their extracts. Any lipid soluble substance is going to be a lot more long-lasting, which could possibly lead to being a more potent inhibitor. And yes, supplementing with household cinnamons could (over a long period of time) lead to the potential for a build-up of oil-based toxins and other volatile chemicals

I definitely understand the concern about CoA inhibitors in general. But the risks are probably far outweighed by the benefits, as a fairly powerful anti-oxidant, and blood sugar regulator. Just as little as 250mg 5-7x a week. Though, if anyone is truly worried they could always supplement with water-soluble cinnamon extract, or CinnulinPF. Doctor's Best makes a very inexpensive formulation using CinnulinPF

*http://www.cinnulinpf.com/
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Postby Biologist » Sun Apr 01, 2007 10:32 pm

bucho,

On March 12, you wrote the following:

"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

Anything informative to report?

I go to my Dr. this week for the first time since I quit statins. I will be asking him about the ALS-like quiver in my arm and see if he has ever seen or heard of anything like it improving over time. I'm not real optimistic, but will be interested in what he has to say -- other than that I need expensive testing by a specialist. No thanks on that. But if he has a recommendation for a local "statin damage specialist" (i.e., a Statinologist, if I may be the first to coin the term) -- that I will consider.

I may also get a lipid test done (as you say, just for kicks and to see what my normal / correct level is) at the same time I see about the more meaningful tests discussed on this forum which I have never had done before such as homocysteine levels and C-reactive protein levels, etc.

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Postby adec » Sun Apr 01, 2007 11:55 pm

Biologist, that's very interesting, a "statin damage specialist." I'll bet they would make a killing, pardon the pun. :) I know you will keep us abreast of any new information.... every little bit helps.

And for the record, I now have my mom being tested for C-reactive protein, lipoprotein (a,) homocysteine, 25-hydroxy-vitamin D, HDL, and overall cholesterol ratio. The doctor, as well as my mom and myself, have agreed to totally ignore total cholesterol levels. This is the type of doctor everyone should be as lucky to have. He's willing to work with me one-hundred percent, even enough to adapt his own thinking when presented with the facts. I believe we are both amazed and encouraged by my mom's progress.

As for your ALS-like symptoms, I have treated my mom's shaking with nootropics. You could give these a try if you're really hard-pressed for a solution. I believe they continue to improve my mom's condition; her head and limbs, which once disturbingly shook, are now *completely* still. Here's what you could try:

-- Cerefolin w/ NAC (this is a prescription medication, the most bioavailable forms of vitamin B3, B6, B12 -- greatly lower homocycteine, with great antioxidant properties, crosses blood brain barrier etc.)

*http://www.cerefolin.com

Then research and pick one from each class of supplement based on your requirements. Together these cholinergics work to synergistically enhance the properties of one another.

-- acetylcholine precursor (choline, lecithin etc. -- I would avoid DMAE)

-- vasodilator (vinpocetine, ginkgo biloba, hydergine etc.)

-- racetam (piracetam, aniracetam, oxyracetam etc.)

-- acetylcholinesterase inhibitor (huperzine, galantamine, memantine, donepezil etc.)

-- melatonin, also, dopaminergics, serotonergics

*http://en.wikipedia.org/wiki/Nootropics

A year-and-a-half into my mom's own road to statin recovery, I continue to be truly inspired, as well as angered, by all of your stories.
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Postby SusieO » Mon Apr 02, 2007 7:23 am

Adec; your Mom is very lucky to have you taking such great care of her!
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Postby Cat Mom2 » Mon Apr 02, 2007 8:41 am

I have been puzzeled about this having to get up at night to go potty and knew it was statin related. I have always been a sound sleeper and NEVER had to get up at night to go... Mine didn't start until I got OFF the statin drug. I'll feel like I am about to bust and go.... then I have a weak stream and sometimes feel like I have to force it out. I will have to get up sometimes only once, then sometimes 3 to 4 times a night... When I was on them, I was always having to go and the force it came out with use to shock me... now it has gone to this slow and weak stream... I think I have mentioned it here somewhere before...

Is there NO part of our bodies this stuff didn't mess with? What kind of problems is this going to cause years down the road?
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Postby Biologist » Tue Apr 03, 2007 9:56 am

adec,

You mentioned Vinpocetine again in this thread.

Check out this post I just made:

http://www.spacedoc.net/board/viewtopic.php?p=3853#3853

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Postby bucho » Tue Apr 03, 2007 4:48 pm

The results of my tests are in (Biologist, you were asking a few posts back). I don't have the numbers with me but the short answer is:

1. No prostate problems;
2. Kidney function is fine (whew!);
3. CK level still above normal but reduced (used to be about 300, now about 200, where I guess 170 is considered the upper limit of normalcy).

This doctor sent a short note with the results, attributing the elevated CK level to muscle damage due to a "severe statin reaction" and stating that this is typical of an adverse statin reaction and that he expects it to continue to improve now that I'm off statins.

Amazingly, my lipid levels have not gone back up despite a full year now off the Zocor! In fact, my homocysteine level has continued to drop and is now one-half what it was a year ago. Wish I had the numbers with me, but here's the upshot:

When prescribed a statin 5 years ago:
a. Total Chol 280
b. But "good" cholesterol and ratios looked good (I now realize)

After 3.5 years on Zocor:
a. Total Chol 210
b. Again "good" cholesterol and ratios looking good

One year after stopping Zocor:
a. Total Chol 214 !!
b. Good chol and ratios looking good
c. Homocysteine levels one-half of level when I stopped !!

Here's the kicker: The more eggs and meat I eat, the better I feel. I'm finally starting to lose the body tremor "under load" during exercise that has dogged me for over a year now. I've come to believe I need to get the chol level back up!! My colleagues do a double-take when I walk in the door with a double-burger and tell them I'm trying to get the chol back up.
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Severe Muscle damage

Postby Scared by Big Pharm » Wed Apr 04, 2007 7:05 am

Just a note: A member of our church is now wheelchair bound.
Dr.s don't know exactly what is wrong with him. Say it's "like" ALS, but not.

Just found out in talking with another member who know him well (I don't) that he was on HIGH dosages of Statins (I believe Lipitor) before all this happened.

This poor man has been reduced to a wheelchair, has limited movement of his hands and sometimes loses the ability to speak. The Drs. say his adrenilin (sp?) gets messed up when he gets too excited and causes the speech loss.

I am thinking that since the statins deplete so many "good" chemicals in the body, this could surely be related. Why can't dr.s see these connections? How many more poor souls like this are going to be left suffering needlessly? Is this worth the not having a heart attack risk? I surely don't think so.

I say that if we don't smarten up and demand these drugs be pulled that we are going to have an epidemic of younger folks who need nursing care or will be in nursing homes....long before their time!! Who is going to foot the bill for this? Big Pharm? Our Drs. ? How do we go about getting this stuff banned?

My mother-in-law still is suffering from short term memory loss (age 70).
She doesn't appear to be getting much better after 3 months off the statins. (we actually had to take the pills out of her apartment, as she would start taking them again...she'd forget she wasn't supposed to be taking them!!)
She gets too confused and won't take the CoQ10 we bought her...her primary dr. hasn't "approved" it!! She is the one who put her on the dangerous poision in the first place! So she will wait until May to talk to her about the supplements. If she remembers! How ironic and sad is that?

Thanks for all the info. I must admit some of it is difficult for me to follow, but good to see we are keeping this fire going.

The next step should be a massive letter writing campaign to members of congress. We have to get this (and other dangerous drugs..zoloft, fosamax etc.) off the pharmacy shelves.
:shock:
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Postby Biologist » Sat Apr 28, 2007 5:24 pm

bucho,

I now have some results for you on the nocturia issue. You mentioned that yours got worse after weightlifting.

ROGER THAT !

Affirmative.

I had almost forgotten about this thread when I recently started lifting again. Real light the first time so as to see where I was. No noticeable nocturia and very little soreness (as would be expected of a "good lift" session after a long hiatus -- but that one was too light). I waited almost five days before lifting for real this time at the beginning of this week -- I am currently still stiff and sore as would be expected.

Here's the news:

Nocturia big time! I lifted late in the day. That night, I do not remember any big issue with it. The next night I was up frequently with nocturia -- I had forgotten how bad it could be and had not had any such problems for months. So, your hypothesis of the linkage, as far as I am concerned, is proven.

What is the mechanism(s) involved? I do not know. But I am convinced the connection is very real. And I thank you for pointing out your observation. That night I almost smiled to myself several times, while half asleep, knowing what was going on because of your original post.

OK, I have a theory or two, but some other time on that...

(BTW, you might want to check out the Neuropathy & Statins forum where I updated my last post some days ago -- it would not be obvious from the main menu that there is a new post as the last one in that forum was also mine.)

Another update:

Vinpocetine has been discussed in this thread. I have tried it several times and have reached my conclusions.

1) It's not for me.

2) But it might be for others.

It is classified as a nootropic by some accounts. I found that the smallest of amounts made me a bit anxious -- just as one website I researched had suggested it might for a minority of the population trying it. The greater point is that it had an impact on me -- that proves that it is physiologically active and not some "placebo" by other name. The stuff works -- just not the right way for me. So, ironically, I would recommend trying it. There are sites cited in this thread if anyone wishes to check it out.

Poohhel, you wrote:

"I am confused... Am I reading that cinnamon
and garlic are statins? Are we talking about the
everyday cinnamon and garlic found in our foods
or just strong concentrated doses in capsules
or tablets?"
--Poohhel

In large "doses" both act as statins. Should they be avoided in food? I don't think so. At the same time, I personally would never take therapeutic doses of either for health reasons as I have cited in this thread.

harley2ride,

I am curious how you are faring these days. I know that your temperature was dropping gradually for some time. Has that stabilized? I had read somewhere that 96.9 was still considered within the range of "acceptable" or at least observed as being in the broad range of "normal."

Did you ever try the L-tryptophan? If so, anything to report? I believe that I will give it a try. It is hard to find. The website cited in this thread is where I will go for it.

*http://www.biochemicals.com/products.htm

Brooks,

I do not yet have anything to report on Idebenone. I quit taking it a while back after only a week and never gave it a good chance. It was at a time I was trying other things and did not want to cloud the picture with too many supplements in the mix. Any comment on your experiences? Maybe it is not the kind of thing that one would be able to judge?

I wrote in this thread:

I may also get a lipid test done (as you say, just
for kicks and to see what my normal / correct level
is) at the same time I see about the more meaningful
tests discussed on this forum which I have never had
done before such as homocysteine levels and
C-reactive protein levels, etc.
--Biologist

I decided not to bother at this time but may have it check in a few months, or at my one year anniversary of being off statins. I really don't care what my levels are is knowing will not alter any behavior of mine. I think I am doing what is necessary for the ones that count. Also, there is a new test that is coming out soon that is supposed to be more accurate on the homocysteine and C-reactive protein levels (one or the other or both -- I have not really checked it out). I think my doctor said it was about $200 to $300 dollars. Here's the website he gave me for it.

*http://www.plactest.com/

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Postby cjbrooksjc » Sat Apr 28, 2007 8:44 pm

Biologist: I thought at first the idebenone made a difference; now, I' not so sure. Each time try something new I have heightened expectations and seem to be more alert to any improvement; the idebenone experiment was no exception. This makes me an unreliable source since all my evidence is anectdotal and influenced by my expectations. I just finished my month's supply and will post if I now begin to fail in some way. I don't expect to, and I don't expect to buy more idebenone. I'll stick with the CoQ10 (which I never stopped taking).

Regards,

Brooks
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Postby xrn » Sat Apr 28, 2007 9:17 pm

I have been observing this thread for some time and it has been tough to keep an eye on the ball. The phenomenon that is nocturia has many root causes, if the medical literature is to be considered as reliable. (this is, depressingly, becoming a necessary rider to whichever sources I have read) Urology was never an area in which I have ever had more than a passing knowledge (or interest in) but many things mentioned in this thread have struck chords with me.

The urge to urinate is a neurological response to an imperitive from the bladder, which is made from smooth (involuntary) muscle. In good health, and with all things being equal, it results from the bladder being full and wanting to contract to empty, so the bladder sends a signal to the brain that it needs emptying. You then get the signal (the urge) to go to the bathroom and voiding (micturition or urination) would normally take place. The list of malfunctions that can interrupt and upset this process is long.

You could separate the causative factors into groups that may help with seeing the issues more clearly. If you were just to look at irritants that may stimulate urine production or mimic the urge to urinate, such as... infections, anywhere in or around the urinary tract, including kidneys, bladder, urethra, prostate, vagina, you could have a whole host of factors that are considered to be contributing to dysuria. Infections within the urinary tract are usually identified by some sensation of 'burning', when voiding urine.

Psychological stresses such as anxiety can also adjust the physiological response of the bladder. We most commonly see this as something like pre-interview (or other important event) 'nerves'. Many people in this situation feel the desire to go to the bathroom and it highlights that the higher centres in the brain have taken over what is usually considered to being an autonomic function of the body. That is, that there is no need for your intervention in filling the bladder and the urge to urinate can be suppressed but you will void if you do not supress the urge (higher centre activity) to urinate.

Physical obstructions to the urinary tract can be responsible for the urge to urinate. Constipation can block the urinary tract because of the proximity of the colon to the urinary tract. Stone production within the kidneys or bladder can block the urinary tract. Tumours within this area can block the urinary tract so in men, benign prostatic hyperplasia (a non-malignant overgrowth pf prostatic tissue) is one possible culprit for blocking the urinary tract.

Needless to say that anatomical changes and other age-related changes may also play a part. As one ages, the sensation of a baldder that needs emptying may be a delayed until the bladder is almost full and then the urge to urinate is very strong, and there may not be enough time to find a place to urinate.

This is not intended to be a comprehensive list of causative factors for the urge to void urine. I merely offer it as the briefest of glimpses into the mysterious (and often wet) world of urological medicine. The take home point is that although the causative factor may be the dreaded, while not particularly useful, multi-factorial answer, it is useful to know that the muscles to the outside opening of the bladder (the external sphincter) are striped (striated or voluntary muscle) and this is just the type of muscle that is affected by statins.

Whenever I see the words 'statin' and 'muscle' within the same sentence, I now assume that statins have wrought their particular brand of dark magic and have royally messed with the underlying system. I know that is not particularly scientific but it makes just as much sense as implicating cholesterol in every trouble known to beset the animal kingdom. :roll) It also has the benefit of reminding me that statins are not to be considered to be bio-friendly substances and any opportunity to avoid taking them should, in my opinion, be grasped with alacrity and to heck with the medical profession's naysaying.

My small knowledge about statins, raises my index of suspicion for neural damage. While I was looking for information to assist me to speak coherently about the issue of nocturia, I was reminded of doc's own piece on ALS. You will find it at http://www.spacedoc.net/ALS_statins.html and after reading some truly distressing stories, it is plainly obvious that the pharmaceutical interference with the mevalonate metabolic pathway (via statins) has produced far-reaching and disasterous consequences. The disturbing propensity for physicians to treat numbers, rather than people, is exemplified by case #10.

Kind regards,
xrn (desperately trying not to muddy the waters)
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Postby bucho » Sun Apr 29, 2007 12:54 pm

SUBJECT: NOCTURIA

Biologist,

Your replication of my nocturia observation now makes this an "observation in good standing!" Thank you for your latest "experiment" and observations. This is encouraging because maybe it will be a useful clue in troubleshooting our problems more generally.

xrn,

Please provide supporting theory, ASAP! (In short, I believe we've developed into separate "branches" in the antistatinological sciences, one empirical (to which I belong) and one theoretical (to which I would like to nominate xrn as appointed to the "xrn chair", signifying not only scholarship but also an excellent job of global outreach).

I too have noticed a time-lag of at least 12 hours after heavy exercise before the nocturia sets in. Then it (the excessive urge to urinate, but not much quantity) seems to last about 24 hours, i.e., during the day too.

New observation:
The "day and night nocturia" (apologies to the more linguistically inclined) is not triggered unless the workout is heavy. More precisely, only if I do "bulking-up" exercise (higher weight levels intended to produce new muscle tissue, rather than maintain existing) do I get the problem. So I wonder if the problem is caused by some form of proteinuria? Maybe as the proteins accumulate in the bladder they are an irritant to the related nerves that generate the urge to urinate??

New topic
I'm tempted to start a new thread "Statins and Shingles." I was diagnosed with shingles decades ago due to an outbreak in my 20's (had chicken pox as a child). Now in my 50's, I get a little post-herpetic neuralgia (PHN) after a good workout as well. I have wondered if the zocor weakened my immune system to the point that the shingles virus is becoming active. (My unschooled theory, a virus "biker gang" normally dormant and contained in certain nerve networks which are now damaged and unable to keep them at bay due to statin neuropathy). I have numerous symptoms that could be interpreted as viral flare-ups in the nerves and brain. Since most people have the shinges virus, I'm wondering statins simply reduce the body's ability to keep it reined in. Maybe a lot of the more bizarre statin problems people experience could be exlained this way.

Any thoughts anybody?
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Postby Biologist » Sun Apr 29, 2007 2:13 pm

Thanks, guys. Interesting posts. Lots to work with here. Back before too long for comments.

Notable Star Trek Flight Log Entry:

"All physician-like creatures located and
consulted here, like on the planet Earth,
regarding our statin damaged crew
members all respond in monotone and in
tight unison upon repeated questioning:

'We are not programed to respond to this line of inquiry'
--Chief Science Officer"

Figures.

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Postby cjbrooksjc » Sun Apr 29, 2007 8:57 pm

biologist, bucho, xrn: If you Google [mitochondrial urea] you get a rift of links. My eyes and neck are sore from reading, but I'm sure there is a link between these symptoms and statin damage to the mitochondria.

Regards,

Brooks
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Postby Ray Holder » Mon Apr 30, 2007 5:15 am

Hi all

Just a thought about nocturia, I believe that the pelvic floor muscle has a lot to do with bladder control, physiotherapists give exercises to strengthen it to help overcome the problem.

But this is where the connection with statin damage comes in, I would assume that this muscle is one of the "endurance" muscles, which rely more on the presence of sufficient carnitine to metabolise fat for muscle energy. Carnitine production is reduced by statins and high energy using exercise runs the reserves down to near empty, so muscles run out of fuel and the pelvic floor muscle has not sufficient strength to carry out it's function fully.

When there is Carnitine shortage it is not wise to exercise above one's ability to replace what is needed for that exercise, or muscles start to feed on their own protein to fuel it, with wastage starting to occur. It bothers me to see all the weight lifting and energetic exercise being taken, much more gentle and less energy consuming forms need to be found, unfortunately, unless carnitine production picks up again, a most unlikely event.

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