Zocor Fine for 3 Years, Then Internal Cataclysm

[bucho]

I rarely find time for any "cause" other than my work, and up until now I've given the A.M.A. cart blanche and, as they would advise, I've largely dismissed "medical problem" internet forums as misguided or misinformed. But in the end this forum probably saved me just in time from my personal Zocor disaster.

I'm adding this post because I experienced a wide range of unusual symptoms that were originally mild and easy to ignore, but which later erupted in intensity and nearly destroyed my ability to function. Based on what happened to me, IT IS VITAL THAT PATIENTS REALIZE THAT STATIN DAMAGE MAY NOT MANIFEST FOR SEVERAL YEARS. WHEN IT DOES, IT MAY BE TOO LATE. WHEN YOU STOP TAKING A STATIN, YOU MAY ONLY SEE SLIGHT IMPROVEMENT UNTIL SEVERAL WEEKS HAVE PASSED. I've now been off Zocor now for 4 months, and am yet only about 70-percent recovered. I still have frequent relapses but they are decreasing in intensity. Never did my primary doctor consider that Zocor would have any side-effect except muscle damage.

The things I experienced on Zocor were entirely new and "bizarre" to me. No medical diagnostic could find anything wrong. Among the many remedies I tried, the only thing to have any positive effect was stopping Zocor, and since then the progress has been steady (but slower than I'd like).

MY STORY
I'm a 52 year-old male professional (PhD Electrical Engineering). I've always been fit, active, and high-energy in lifestyle. I was put on 20 mg Zocor 4 years ago for slightly elevated cholesterol. The first 3.5 years seemed okay. Then, in January 2006 the big problems began.

It began as waking up at night disoriented. I couldn't find the bathroom and would walk into walls. Then a few weeks later I had a supposed "panic attack" (according to my doctor) where I awoke at 4 AM with bradychardia, feelings of suffocation, and excessive sweating above the shoulders. Initially thought to be a heart-attack, all cardio tests came out fine. From late January to late March I went into a too-high-adrenaline phase, rarely getting to sleep before 4 AM. Also upper stomach pain lasting from dinner until 4 AM. All gastro tests came out fine, except the Dr. felt that I had slow digestive motility for unexplained reasons. My ears began ringing at about that same time. I lost tactile sensation on the bottoms of my feet and in my fingertips. I experienced muscle tremors and a feeling of pulsation throughout my body (which lasted for months), at about 4x my heart rate (4 Hz). In March my visual field began to pulsate in brightness in lockstep with the body pulsing sensation. At night flashes would occur just as I was falling asleep, forcing me out of sleep. Also in March I developed exertional intolerance, in which all of the above symptoms would go into high gear for 48 hours straight after exercise, causing me to abandon a lifelong exercise regimen. My motion under load also became jerky rather than fluid, although the muscle strength seemed unreduced. (I did have the often-reported chronic muscle pain between the shoulder blades by this time, as well as in the back of the neck.)

In late March add to the above the following symptoms: My teeth began to chatter, with varying intensity at various times of day, and at about the same time my right eye began having problems focusing. I sometimes would see double, and at other times I experienced nystigmus bad enough to impede my ability to read. My sensations and mood became remote, which I described to my wife as feeling I was "trapped inside a bell jar." I was also experiencing random hot-flash sensations in my limbs. I was perpetually exhausted. My energy level, my ability to concentrate, and my verbal skills were impeded to the point that I was taking vacation time liberally just to maintain functioning.

In April I discovered your web site and the many other internet resources addressing statin adverse effects. I took my last Zocor on April 15. My problems by then seemed so intractable that I doubted that stopping the Zocor would be the needed solution, but I did so as an experiment. As for recovery, it is now August 15 and I can state that all of the above problems have decreased markedly. But progress is measured in months, not weeks. My teeth still chatter at times. The tinnitus I thought I'd spend the rest of my life with is now gone most of the time! My sleeping is improved but I still need Lunesta every night (but at least now it works!). My ability to concentrate and stay on-task are improved but still leave much to be desired.

Best of all, I have been able to resume exercising with minimal adverse effects!

As I am now in the fifth month of my statin-stopping experiment, it is becoming clear that the statin was indeed the cause of all these problems. What's particularly alarming is that it touched so many aspects of my living experience, from autonomic to cognitive to emotional. Many of the side-effects were subtle, damaging mood and perception, and creating a feeling of helplessness and being gradually isolated from the vitality of life itself. How can we possibly quantify these things just outside our conscious grip, into a measurable metric that could be used in deeper studies of statins?

I hope my story can be of help to others who may be going through similar frightening experiences, with no apparent medical explanation.



[b][/b]

[sos_group_owner]

Hi "bucho",

Thank you for sharing your experiences with statins. I've been researching
the adverse effects of statins for over 2 years now and I can't tell you how
many times I've read your story, but from hundreds of different people.
And that's just of those that have access to the internet and are searching
for answers.

Recovery can be slow. Although my husband has improved considerably
after 2 years off all statins, he still has persistent short term memory loss.
He also experiences pain mid back and all around his left arm. There is
evidence of arthritis, but I wonder if there is still an underly muscular
problem associated with 8 years of statins.

Glad to hear you are improving.

Fran

[bunnylady]

It is a slow recovery- I am off a re challenge of Crestor after Lipitor and I want to warn people the re-challenge is worse- much worse- I only did it for 3 days and I am in my 3rd month of recovering- I need to challenge myself with little daily walks but my knees hurt so bad my legs shake- I went to a new doctor and they actually held my arm like I was 80 years old- they wanted to make sure I didn't fall- I was riding a bike before all this! Hang in there!

[Ray Holder]

Dear Bucho
Ever since my nearly fatal experiences with Zocor about 5 years ago I have been trying to get authority to listen to the reason why statins can have such varied and damaging effects on those who take them, often insidious and eventually becoming permanent.

The major reason for the problems is that Coenzyme Q10 is reduced as well as cholesterol, and that is the necessary molecule in every cell in the body which gives access to energy at electron level for that cell to perform its function. When Q10 is in short supply, and it has to be renewed each 4 day period, something will go short, heart, liver, kidney, muscle, and in fact just anything, so I have always maintained that side effects can be anywhere and everywhere. I would strongly recommend you to try some Q10 supplement, it worked wonders for me, but the body's manufacturing process for it has been permanently reduced in many cases, and permanent supplementation may be needed.

Dr Peter Langsjoen has a definitive paper on Q10 which will come up on google if you put his name and Coenzyme in for a search. As another electrical engineer, long retired, I have spent many hours searching for a logical reason for these problems, but the medical people seem to rely on epidemiologicl studies and collected statistics rather than an analysis of the biological reasons for the problems.

Ray

[bucho]

Ray,

Your response is right on-the-money and much appreciated. I first became aware of the issue of Q10 suppression by statins via Dr. Graveline's discussions on this web site. After months of fruitless searching, I found his biological arguments to be the first compelling explanation for what was happening to me. So I am now taking about 300 mg of Q10 daily and, as I mentioned, I'm definitely recovering.

You make a key point, that co-Q10 deficiency does not have a single, well-defined symptom. I suspect (as a layman though) that most statin problems are linked to Q10 deficiency. The fact that Q10 deficiency has such a wide range of possible manifestations may be the reason that medical science has failed to recognize the true magnitude of the statin side-effects problem.

I experienced so many strange and terrible side-effects on Zocor that my doctor wondered if I was losing my mind. And in a way I was, until I was able to trouble-shoot the problem without his help, but with the help of this web site.

Best regards,

/B

[Kay Schlichting]

To all victims of Statins:

My mother's health was fine up until approximately a year ago. She went in for a check up and one of the Doc's found a wisper in the artery in her neck. After an extensive check up with all the bells and whistles she was deemed healthy. LDL and HDL within healthy limits. Tri's were great. (She is 66 years old).

Her cardiologist put her on statins and the nightmare began.

She was only on the drug for 3 months and we knew something was terribly wrong. She could not sleep in her own bed because of the horrific pain in her upper torso. She slept sitting up in her recliner for about 4 more months. The fatigue has really deteriated her quality of life. We begain CoQ 10 therapy and it has helped her with the pain tremendously. We have her on 600 mg. daily and she takes it with olive oil for maximum obsorption, 300 in the morning and 300 in the evening.

I have been doing a lot of research and came across some information that recommended L-Carnitine supplements(30mg daily) and Cod liver oil(long chain O-mega 3). As we have just started this therapy I won't know for a while what the benefits might be but will keep all posted. I would be interested to hear if other therapies have proved successful.

Kay

[bucho]

I finally set up an appointment with my PCP to bring him up to speed on my Zocor disaster (see the start of this thread of postings) and the fact that I'll never again take a statin. The good news is that he agrees with me that I should not take a statin. Moreover, based on the severity of my experience, he declined to even attempt a rechallenge or an alternative statin! Now for the bad news: He said he never would have suspected the Zocor! He congratulated me on catching it myself. I was amazed that he could be that much in the dark, having practiced medicine for over 20 years, considering all the adverse statin information that is swirlilng around the internet and news reports these days. Wow.

I asked his opinion of statins in general. He said there's no question that statins have saved "tens of thousands of lives." I replied that new data are suggesting this is due to the anti-inflammatory action of statins, which can be obtained with far lower doses or alternative classes of meds. He was aware of these new findings and said all we can do is wait for the final word on that. He was also aware that there's a lot of adverse statin information on the internet but it seemed to me he hasn't given it much sway. I doubt he's even aware of the books by Dr. Graveline or the recent one by Colpo.

I think my appointment with him opened his eyes more than he was willing to admit during my visit. I think this sort of piecemeal progress, one-on-one with our PCPs, will gradually build into a wave that can eventually blow the lid off this grand mistake medical science has made.

[CatMom]

bucho- I would help the cause (I think) if you would print out some of our stories for him to read now that you have his attention. If nothing else, it may help him listen closer to the next guy who complains of these mysterious symptoms and see what a varity of them there are for each of us.

[BSGfan]

I had been suffering from agonizing lower back cramps, so severe I would need acupuncture sessions two or three times a month over a two year period to simply function. Then I went off Lopid and Zocor. My back improved very gradually. After about six months my back cramps had essentially stopped. I will never take statins again.