Side effects after stopping Zocor?

[pantaleon]

I am 21 years old, female. This past June, I began taking 5mg of Zocor for hereditary high cholesterol (HDL:40, LDL:180). On Zocor, I noticed some minor soreness in my muscles (mainly legs and arms) but ignored it. After 10 days of taking Zocor (along with birth control), I woke up during the night with heart palpitations, wobbly legs, twitching in the muscles of both legs, dizziness, and trouble swallowing. I stopped taking Zocor after this; the symptoms continued nightly for about a week.

As the episodes with heart palpitations, muscle twitching, wobbly legs etc. subsided, my muscles began to ache and cramp, and were noticeably weaker (to the point where, about 2 weeks after stopping Zocor, I could not stand long enough to take a shower). Cramping was worst in the legs and neck, and tended to be fairly symmetric. My muscles continued to twitch, especially at night. The twitching was not symmetric and seemed to come and go in various muscles at random. I began to slowly feel a little less cramped and sore over time, but in mid August all my muscle problems seemed to gradually come back.

I have also had some problems with digestion that began about 2 weeks after stopping the Zocor. I began to have cramping and twitching in my abdomen, frequently felt nauseous and had stomach pains and heartburn daily. I lost 10 pounds by the fourth or fifth week after stopping Zocor (started at 116 pounds, dropped to 106). Since then, I have been able to tolerate food a little better each day and have gained some of the weight back (I now weigh 110 pounds); however I still have frequent stomach pains, cramping, and heartburn.

Throughout the past 2 months I have been having spells of dizziness/vertigo at random intervals during the day and night. Generally, these last about 20-30 minutes and happen about 5 times a day. The dizzy spells aren't debilitating, but are extremely disruptive as I can't focus or think clearly when they occur. During the dizzy spells I feel as though it is difficult to focus my eyes and feel pressure behind them. Sometimes at night this turns into full-on vertigo, I have had problems walking into doorframes trying to leave my room. I seem to have problems being near bright or flashing light, and sometimes looking at a computer screen can bring on the dizziness.

It has been 10 weeks since I stopped taking the Zocor. Currently, I still have problems with muscle cramping and twitching, and fatigue. The cramping seems to worsen at night, and gets noticeably worse with exercise (I have been taking 20 minute walks each evening). Muscle problems and fatigue have prevented me from doing the outdoor activities I enjoy. I get so tired from doing simple tasks, like going to the grocery store, and have to take a nap after each time I leave my dorm. Dizzy spells continue to disrupt my day and interfere with progress at work (I can't work a full day due to fatigue). I can't believe I am 21 years old and spending so much time in bed

Also, my tonsils have been noticeably swollen for the past 6 weeks. Occasionally I get a feeling in my chest like I am on an adrenaline rush, except I don't feel nervous or excited or anything, my heart just speeds up or something.

I have had a whole slew of blood tests, CT scans, brain MRI, lumbar puncture...etc and all came back normal. No liver or kidney problems or muscle damage.

After reading up on statins, I tried taking 300mg of CoQ10. I have only been on it for 4 days. I felt good yesterday, almost back to normal, but today I crashed and spent most of the day in bed feeling very dizzy.

Does anyone know if these problems are even related to taking Zocor (my doctor thinks I'm crazy and just having panic attacks), and if it is normal to be having these problems 10 weeks after stopping, expecially when I was only on it for 10 days? Any suggestions for doctors to talk to, etc?

Thanks

[adec]

Hi Pantaleon, and welcome to the forum. At twenty-one years old your doctor prescribed statins for high familial cholesterol? Did s/he give you any other options initially, like diet and exercise. That's almost criminal, negligently so.

Every symptom you've mentioned is a known side-effect of statins, including muscle weakness, involuntary shaking, and exercise and food intolerances. I speak from experience when I say find a new doctor ASAP.

You're doing the right thing -- obviously -- by supplementing with CoQ10. Almost immediately statins can decrease the body's production of this vital enzyme. Subsequently, low levels of CoQ10 are STRONGLY associated with congestive heart failure. Based on these negative consequences, Merck filed a patent for CoQ10 to be administered with their statin, Mevacor. Yet, they have knowingly continued to sit on this patent for the last fifteen years.

In high doses, 1mg+, statins can also damage liver and kidney function, promote certain cancers, and induce memory loss, transient global amnesia etc etc. Scary stuff. Cholesterol is responsible for many important functions in the human body.

I would also (ASAP) suggest the combination of Alpha Lipoic Acid and Acetyl L-Carnitine to help with your myalgia, myopathy, or possible neuropathy. You will need to cut-and-paste this link inot your browser.

*http://www.vitacost.com/NSI-Alpha-Lipoic-Acid-Acetyl-L-Carnitine

Good luck. And I hope you will please continue read, post, and share your experiences on this forum. BTW, you will also find a copious amount of literature and studies provided by Dr. Graveline.

http://www.spacedoc.net/

[cjbrooksjc]

pantaleon: Your Dr. must be mad or incompetent to Rx a statin for someone your age!! Statins should be a last resort in your situation. Did he/she recommend ANYTHING before going to a statin: diet change, natural cures, weight loss, exercise, alternative Rx, ANYTHING?? Your symptoms demonstrate classic Statin side effects. Get off the statin NOW and read more in this forum on how to lower yr LDL without drugs. Also Google 'Cholesterol' for further info. B6, B12, Folic acid, Alpha Lipoic acid, Vit C, L-Carnitine, Creatine... these are SOME of the supplements we take (in addition to CoQ10) to recover from statin poisoning; that's where YOU are headed.. Oh yes, do get another Dr's view, preferably someone who is familiar w/ statin side effects. In my opinion, your current Phys. is gone completely, around-the-bend BONKERS!

Regards,

Brooks

[pantaleon]

Thanks for your replies.

I have been off of the statin for over 2 months now, I stopped taking it after only 10 days when I woke on July 1 with "panic attack" symptoms.

Has anyone heard of side effects developing *after* quitting taking statins? Most of my problems seem to have developed after I stopped taking Zocor.

Also, can anyone tell from experience how long is "normal" for side effects to last after getting off Zocor?

[cjbrooksjc]

pantaleon: It is important you understand I am not a doctor but a fellow sufferer; that said: there have been those who experienced severe side effects after only ONE dose of a Statin drug; some only after many years of dosage. Unhappily, the length of time to recovery is as unpredictable as the dosage effect. This SHOULD clear up, but it MAY take months to resolve. Statin poisoning recovery is not a picture of gradual improvement but rather a 'good days and bad days' venue. You will likely experience setbacks that will disappoint you - take them in stride - they are typical of the recovery process. In the meantime, continue to investigate your complaints with a COMPETENT doctor, and take all precaution to eliminate ANY OTHER source of your physical manifestations. Read thru the forum for like experiences. I will try to find something else for you as well.

Regards,

Brooks

[cjbrooksjc]

Go to the Statin Drugs category on the main page and find the entry titled "How quickly can symptoms appear". I think you will find it interesting.

Brooks

[Ray Holder]

Hi pantaleon
Sorry to hear of your plight, I am a fellow sufferer, four times your age, but nearly came to grief after four years of zocor use, and even after being off it for 14 months, things got worse. The Q10 and carnitine were lifesavers for me.

I see that your blood tests said no sign of muscle damage, but that is one thing that happens with statins, the CK test may be normal, but microscopic examination will show damage to muscle fibres, probably due to carnitine deficiency caused by the statin, and resulting in the muscle feeding on its own protein to make energy, as fat for energy can only be used for this purpose if sufficient L carnitine is present.

Muscle pain is often relieved by acetyl carnitine, but I only use L carnitine, as I get muscle wastage without it. I prefer to use separate supplements, as you can experiment with different amounts of each, their actions are different, and it pays to try just one thing at a time, or you don't know what is giving you benefit.

Having said that, some people, in places where magnesium is in short supply in the diet, find that some supplementary magnesium helps cure muscle cramping, muscles need calcium to turn them on. and maagnesium to turn them off. For me, it makes no difference, but I suspect I get enough naturally, andI rarely get cramping. you can only give it a try, if nothing else works as well.

I think it is criminal to give statins to a young lady of your age, and I have said as much in letters to a medical website.

Hoping you get relief soon

Ray

[Allen1]

Hi everyone,

just like pantaleon and everyone else here I have had a terrible time with this medication.

Just over twelve years ago I had a heart attack and was soon put on to Zocor 5 or 10mg along with Atenolol and other meds, I had loads of problems getting fit enough to return to my job which I did eventually manage to do. As time went on I was getting tired quicker than I should and I was getting leg cramps at night and during the day lower back pain which would ease off, my memory and vision were also getting messy.

I eventually got my doctor to believe me that there was something wrong and after loads of treadmill tests etc I had an angiagram and there were two 80% and one 50% narrowing of the heart arteries plus the 100% blockage from the previous attack.

Around this time (about 3 years ago) my Zocor/simvastain was upped to 40mg, I was feeling worse and worse as the days went by and we all put it down to the need for a triple bypass. I had the operation about 33 months ago and as far as I know it went fine. My doctor sorted out a 12 week training program for me to join to get my stamina back (properly supervised with nurses etc). As the course progressed I was getting tired easier and easier, the heart monitors we occasionally wore would go nuts on me and we thought it must just be dud and someone must have put it back with the rest again. I went back to work as they found me a job where I could sit and go at my own pace till I got up to speed again.

I really was struggling at work as every day was one hell of a slog, I was starting to slur and kept getting names wrong and couldn't remember what I was saying mid-sentence, I have had most of the side effects that are mentioned here and on other sites and like you all, no one believes that statins could possibly be to blame.

Due to a downturn in work many others and myself and were made redundant almost 2 years ago, I don't think I could have lasted much longer there and was relieved to be one of the ones going (the job I was doing was one of them that ended).

Since finishing work I have had numerous tests MRI brain and lower back, radioactive dye at stress and another at rest (heart) and a whole load of others (no spinal one though thank goodness). It was only when my CK levels had elevated and I was taken off Statins for a couple of months that is when I found out about Statin side effects.

I also found that I could now think again, maybe not that well but sometimes I am not suffering from brain fog although I am still very cloudy most of the time. I stopped taking the Zocor/simvastatin nearly 6 months ago and my symptoms are getting worse, exhaustion, muscular aches in different areas and my thinking process is really poor most of the time. I am thinking a little clearer now and then since coming off this poison but I am by no means capable of concentrating or remembering what I am about unless I write it down and read it several times.

The advice about Q10 and carnitine etc sounds good but as I am on income support here in the UK, there is little chance of trying it to see what would happen unless the Rheumatologist I am about to see organises a trail for me on prescription (not very likely though)

Will life ever return to normal after years of Statin use? I hope so for everyones sake including myself.

Hi Pantaleon,
I hope you have a fast recovery. At 21 you shouldn't have to go through all that has happened and still is happening to you, I really do hope you manage to get sorted and if you do, avoid these Wonder Drugs like the plague.

[adec]

Hi Allen and welcome to the forum. As you can clearly see, there is more beneficial information to be provided here than at many doctor's offices. This information has the potential to restore so many people's lives who are basically suffering from statin poisoning. Anyway, I hope you continue reading, posting, and sharing your statin recovery story with us.

As for the affordability of these supplements, there *is* a way without breaking the bank. First, vitamin C is affordable, and readily available at most stores, and will help facilitate the body's own natural production of CoQ10. I would start on at least 1000mg twice daily of vitamin C. This is something you could do TODAY.

You could also purchase these other vital compounds at a very reasonable price, by essentially buying bulk powders. Being as you're in the UK complicates things with the exchange rate, and customs and all. But you could give beyondacenturyonline site a try, as they will ship to the UK.

CoQ10 powder (take with a slight amount of fat to further bioavailability, such as olive oil, corn oil, peanut oil etc., enough for at least a year's supply for $85)
*http://www.easycart.net/BeyondACenturyInc./Antioxidants.html#2032

Aceytl L-Carnitine powder (a year's supply for $9)
*http://www.easycart.net/BeyondACenturyInc./Amino_Acids_Single_A-L.html#0137

If you purchase from beyondacenturyonline.com make sure to use the code NEWS to take an additional 10 percent off. And feel free to ask if you have any further questions.

[Allen1]

Hi adec,

thanks for the welcome and for the advice too, I only stumbled on this site when I was trying to find out what the cause of my extreme tiredness both physically and mentally. This was nearly 6 months ago when I had to stop the statins due to elevated CK levels, fortunately I was mentally more aware after a month or more since stopping the statins and did a google for tiredness/exhaustion.

I printed off a few posts from here and other sites to show my cardiologist and my doctor in order to prove that what I have been saying about what I was experiencing was not all in my head, I believe everyone else here has had the same look and "well statins are well tolerated by most people etc" this seems to be a well rehearsed and often used statement.

After 3 more blood samples that were spaced out nearly a month apart, I seen the Cardiologist again and my CK levels were returning to normal, he wanted me to go back onto Zocor/simvastatin but I told him no, I won't take another cholesterol lowering drug ever again. I was offered a variety of alternatives including non statin medication but I had no wish to take a chance on what may happen on something else. I have mentioned cq10 and Merks patents to both My Doctor and Cardiologist, I also asked if cq10 was a prescription item (only in some cases), I had already looked for a supply here in my town, they were priced at £27 for 30 100mg capsules (you see why I couldn't afford those).

I have my 1st appointment to see a Rheumatologist in a months time and I will take you up on the vitamin C option until I see what can be done from my visit, he may be able to prescribe the items I need. The prices for the CQ10 and Aceytl L-Carnitine are brilliant, I would never have found those.

I will keep the option open for the CQ10 and Aceytl Depending on what the Rheumatologist can do for me, and if nothing comes from my appointment it means I have had a bit of time to put something to one side ready to buy some.

Thanks,
Allen

(there are a lot of I's in this post but its the best one can do at the moment) ':D'

[Ray Holder]

Hi Allen 1

Did you receive an Email from me forwarded via spacedoc? I would like to get in touch with you about very affordable supplements, nothing like UK shop prices.

Ray

[Allen1]

Hi there Ray,

I got your email and have just replied to it and I am looking forward to the reply, both you and adec have opened my eyes to the affordability of these items.
We really do get seriously ripped off here in the UK!

Thanks again,
Allen. (I am pleased my Firefox browser has a spell checker built in) :-)

[Allen1]

Hi there Ray,

I read your paper called `putting the pieces together` last night http://www.spacedoc.net/r_holder.html

there is a great deal of information in it and it is set out in an easy to understand way, I wish I had noticed it earlier as that would have been ideal to show my Doctor, He couldn't really argue with the facts and logic of your paper. When you consider that this was written 2 1/2 years ago,everything mentioned is still valid to this day including the lack of information that a Doctor has about Statin side effects including Q10 and carnitine deficiency and all the memory and physical problems and the fact that they are a lot more frequent than they were ever led to believe.

It was definitely worth reading.

Cheers,
Allen.

[bucho]

Subject: Statin-induced "panic attacks"

To Pantaleon's question about zocor-induced panic attacks, I personally experience these while on zocor, and I know of several other folks on statins who have reported the same thing. A most important distinction, however: In my case and in the case of the others I know who had these attacks, we all noted that the "panic attacks" lacked one essential ingredient, specifically, a reason for panic. I would awaken suddenly in the night with my heart racing and my body accelerated for no apparent reason. My doctor (the one who put me on zocor) wanted me to admit that I was going through a stressful period in my life, but I insisted that no, outside the mysterious medical phenomena, my life was at a relatively low stress level. I pointed out to him that I had endured far greater stress in the past without any such problems.

These synthetic panic attacks ceased within a couple months of getting off zocor. If you are interested in further detail of my particular statin horror story, I have a long thread of postings going back more than a year on this site. I'm about 90-percent back to normal now -- dramatically improved and almost completely recovered -- after being off zocor since April 15, 2006.

[NVaVettes]

Fellow sufferer here w/ 7 years experience....

I will echo the recommendations above:

Centrum multivitamin
asprin (325mg helps with tingle)
get on as much CoQ10 as you are comfortable with (400+mg for me)
alpha lapoic acid
acetyl L carnitine
omega 3 oils

One other thing I will add:

[b] Eliminate as much refined sugur as you can![/b]

NO sodas (diet or otherwise)
NO candy, cakes, cookies
anything with high fructose corn syrup/poison)

Fruits are fine
Fruit juice not so much (too much high fructose corn poison added)


I was on 30mg Zocor for 7 months; thought I was gonna die.
I was slowly getting worse for 6 years after stopping, and have now
been on the above supplements for about a year: BIG IMPROVEMENT!

Hang in there, there just might be a light at the end of this tunnel!

[Blueywoofdog]

I was put on ZOCOR (LIPEX) in 2001. My blood cell counts were normal back then. And I felt well. Since then, my blood cell counts have dropped. My red and white blood cell counts are marginal i.e. both low and abnormal. And, my platelet count is quite low, i.e. I am sitting around 80-90 when normal range is 150 to 400 (or 450). It is now October 2007 and my doctors don't know when my blood cell counts went abnormal. I.e. we now have a 6 year un-monitored gap where I have no history of blood cell counts. Although my doctors have been keeping an eye on my cholesterol levels which seem to be stable in the 3.4 to 3.6 range.

I haven't been my normal self since going on this statin drug LIPEX. I have noticed a very gradual drop off in energy over the past 6 years, and I've put this down to just getting a bit older. But now I'm not so sure. I can't believe I've let myself take this statin for 6 years without questioning the drug. I am taking a 20mg dose of LIPEX in the evenings.

I've now taken myself off LIPEX this week and I will monitor my energy levels. I take 3 grams of Nicotinic Acid per day (1 gram 3 times a day with food) which I will continue to take. Nicotinic Acid is a natural Vit B3 which apparently eats cholesterol. In a month or two, I will get my blood cell counts checked again along with my cholesterol levels.

[adec]

Hi, Blueywoofdog, and welcome to the forum. I believe 3 grams daily of niacin is way too much. For one thing, I'm surprised anyone could take that much flushing. You stand the risk of elevated liver enzymes and homocysteine, and generally damaging your liver. I personally would never ingest more than 500mg to 1 gram daily. In the very least, make sure to supplement with milk thistle to protect your liver, and folic acid, vitamins B6 and B12, and/or TMG (trimethylglycine or betaine,) to reduce homocysteine.

Otherwise, instead of placing your eggs in one basket, I too believe something like astaxanthin is definitely worth giving a try. Unlike niacin, astaxanthin is also considered a very powerful anti-oxidant. This would place even more importance on lowering oxidized-LDL and triglycerides, and raising your HDL. These things are of far more relative importance than total cholesterol numbers, and much more beneficial toward reducing mortality.

[Blueywoofdog]

Hi Adec,
Thankyou for your feedback. Yes , I flushed terribly when I first started Niacin. It took me about 4 weeks to get myself onto the full 3gm daily dose. I do have higher than normal levels of homocysteine, generally between 10 and 12. Where I would generally like this to be below 10. My liver levels are within the normal range and my GP keeps a pretty close eye on this.

I forgot to mention that I am already on the following daily Vitamins; Folic Acid 5mgs, Vit C 2gms (1gm twice daily), fish oil capsules 4x 1gm capsules (2gm twice daily), Aspirin 150mg, Vitamin B Complex TA Strong 20mg, Healtheries adult Super Multi 2 tabs (1 tab twice daily), and of course Niacin 3gms daily (1gm three times a day).

Thanks for your suggestions especially on astaxanthin. I have been thinking of getting myself onto the CO_Q10 ?

regards
Richard

[adec]

Richard,

Yes, since statins have been proven to deplete CoQ10, you should add this supplement ASAP. CoQ10 is vital enzyme found in all cells, and is responsible for mitochondrial energy production. The heart especially requires massive levels of CoQ10 to function properly.

Merck actually had patented CoQ10 to be co-administered with their statin some fifteen years ago. But they continue to sit on this patent, while knowing of the dangers associated with CoQ10 deficiency. For instance, low levels of CoQ10 have been *strongly* associated with congestive heart failure. I believe you've made a wise choice in discontinuing statins. Keep perusing this forum and the reasons will be clearly revealed, one-billion-fold.

Otherwise your regimen looks pretty good. Again, I would cutback on the niacin to 500-1000mg daily, it's unnecessary and potentially harmful. I would definitely look very seriously into astaxanthin. And I would also add acetyl-L-carnitine and alpha lipoic acid to complete the Krebs cycle for energy production. Ribose would also greatly help in increasing your reserves of cellular energy. If you have any more questions feel free to ask.

Take care.

[Allen1]

Well, its been a long while since I posted here, I have been off Statins for about 9 or 10 years and most of the aches and pains have gone away and the need to sleep all the time is now down to just needing a nap in the afternoon. My mental ability although still limited, is a vast improvement from the brain fog that lasted for more than 5 years after stopping statins (supposedly it is said to only last a couple of weeks by experts).

Apart from gout, Arthritis, diabetes and still getting worn out so easily, life is a lot better than it was when I was still taking Statins and as time goes by you don't realise just how bad things were.

The reason I am posting on this old thread is because my diabetic nurse said my cholesterol level has risen and asked what my symptoms were and why I came off statins, you know what? I couldn't remember the constant tiredness and a whole lot of other problems apart from memory loss, mood changes and aches and pains. I think we just take things as they come and forget or don't realise when things stop being so bad because we were so used to problem after problem arising from this form of treatment.