In an Attempt to Prolong My Life

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

In an Attempt to Prolong My Life

Postby poohhel » Mon Mar 26, 2007 2:15 am

I heard it over and over again from my doctors. . . "you have got to quit smoking so you can live a full life and see your children grow up" . . . "you would feel much better if you would quit smoking" etc etc etc. . . Even though, at the time that I quit smoking, I was pretty darn healthy. I was able to workout for 30-45 minutes, 6 times a week; played volleyball every weekend, and did ballroom dancing 3 times a week. I had no evidence of any health issues except high cholestrol (which runs in the family). So when my doctor suggested that I start taking Vytorin to bring my cholestrol inline, I thought why not. . . Little did I know. . .

16 months later. . . I can't walk up or down my stairs without pain. I can't workout, play volleyball, or dance without excruiating pain. I ache from head to toe...I have gained 20 pounds! I am depressed, have headaches, have swelling in my hands and feet (can't wear my wedding ring), have a feeling of numbness and tingling all day and night, can't sleep and when I do finally fall asleep--wake up in night sweats or from outrageous dreams.

Don't get me wrong I know smoking isn't good and quitting was the right thing to do... but to think I struggled to quit smoking because of the scare my doctor put into me and then my doctor turns around and makes my life even worse by prescribing Vytorin. . .
poohhel
 
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Postby SusieO » Mon Mar 26, 2007 10:19 am

poohhel - welcome to the "wonderful world of statin damage". I hope you begin to feel some relief after stopping the Vytorin. You will find a lot of great folks here as well as great information.
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Postby poohhel » Mon Mar 26, 2007 1:02 pm

[quote="SusieO"]poohhel - welcome to the "wonderful world of statin damage". I hope you begin to feel some relief after stopping the Vytorin. You will find a lot of great folks here as well as great information.[/quote]

Thanks SusieO, I am grateful that I found this site, forum and people like you before it got any worse... I have a doctor appointment today with a new doctor and I am going to share this information with him...hopefully he will listen and believe... :wink:
poohhel
 
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Postby cjbrooksjc » Tue Mar 27, 2007 5:36 pm

poohhel: Your history sounds a lot like mine and others on this forum. Those of us who were in fit condition seem to fare the worst in this scenario; we don't know why. It has been 8 mos since I stopped the Statins after 3 1/2 yrs., and 6 mos since I found this site and began taking the suppliments; I feel better every week that goes by with (now) small, occasional setbacks. All-in-all, I would say I'm around 60% of what I was. It takes time.

Best of Luck,

Brooks
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Postby poohhel » Fri Mar 30, 2007 10:33 pm

Brooks . . . I am glad to hear you are doing better and thanks for the reply. I have seen bits and pieces about the supplements in the postings but can you point me in the direction of the complete list? Are these over the counter supplements or do I need doctor prescriptions? Additionally, do all of these get taken everyday?
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Postby Ray Holder » Sat Mar 31, 2007 9:50 am

poohei

Please see my other posting to you, the supplements are needed daily and are not from the doctor, SOS group owner has a fairly full list on many of her postings. Q10 and carnitine are the most urgent necessity to help in present problems, but the others are advisable in the longer term to take the place of the statin to avoid artery etc damage.

Ray
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Postby cjbrooksjc » Sat Mar 31, 2007 11:07 am

Poohel: below is Sos-Group-Owner's standard recommendation:

*********************************************************

Buffered Aspirin - 81 mg (contains beneficial magnesium)
CoQ10 - 100 to 150 mg (gelcaps - NOT powdered) with some Vit E
* Folic Acid - 400-800 mcg
* B6 - 80-100mg
* B12 - 200-250mcg
* (all 3 of these B Vitamins control Homocysteine)
Omega 3 (Fish Oil or Cod Liver Oil) - There is no upper limit

Dr Graveline's Statin Alternatives reduce and prevent inflammation, are anti-oxidants, reduce platelet stickiness, control (toxic) homocysteine and have the same anti-inflammatory affect as 20 mg's of Lipitor, without side effects.

"Statin Alternatives" are NOT intended to reduce cholesterol levels.
Statins (as do statin alternatives) reduce the type of inflammation that leads to heart attacks and strokes. The fact that statins also reduce cholesterol levels is 'irrelevant'.

Source: *http://www.spacedoc.net/statin_alternatives.htm

(remove the leading * if you copy this url)

**********************************************************

I take about one gram (1000Mg) of CoQ10, and I also take about one gram of L-Carnitine or Acetyl L-Carnitine in divided doses twice daily.

All of these supplements are available at the drug or health food store; they are also available more cheaply from varoius sources on-line.

Regards,

Brooks
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Postby poohhel » Sat Mar 31, 2007 3:01 pm

[quote="cjbrooksjc"]
I take about one gram (1000Mg) of CoQ10, and I also take about one gram of L-Carnitine or Acetyl L-Carnitine in divided doses twice daily.
All of these supplements are available at the drug or health food store; they are also available more cheaply from varoius sources on-line.

Regards, Brooks[/quote]

Thanks Brooks :D
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Postby poohhel » Fri Apr 06, 2007 1:32 pm

I started taking the list of supplements a couple days ago but am experiencing an allergic reaction. I have endless itching all over from top of my head to top of my feet and little red bumps on my face, neck and arms. Even my eyes are itching... Does anyone know which supplement could be causing this???
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Postby Ray Holder » Fri Apr 06, 2007 3:57 pm

A rash is a known rare effect of Q10, you could try cutting down a bit, 1gram is quite a high dose, I take 600 mg daily as I need that much to prevent angina, I would not have thought you needed as much as that for statin effects elsewhere. You could try cutting it down to say 200 mg and see if that improves things, it would be a pity if you could not take it at all. Of course, it might be one of the others but I have no info on them.

Ray
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Postby poohhel » Fri Apr 06, 2007 5:44 pm

[quote="Ray Holder"]A rash is a known rare effect of Q10, you could try cutting down a bit, 1gram is quite a high dose, I take 600 mg daily as I need that much to prevent angina, I would not have thought you needed as much as that for statin effects elsewhere. You could try cutting it down to say 200 mg and see if that improves things, it would be a pity if you could not take it at all. Of course, it might be one of the others but I have no info on them.

Ray[/quote]

Thanks Ray. I was only taking 600 mg a day spread out over two doses. But I am going to let the rash clear up and then start each supplement 1 at a time and see if I have/when I have reoccurring rash.
poohhel
 
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Postby carbuffmom » Sat Apr 07, 2007 10:05 am

Poohhel:

About 4 weeks after stopping vytorin, I developed a rash of tiny red bumps all over my chest and back. I had stopped the statins cold turkey after 13 years, so I figured it was just making its way out of my system. I also was NOT taking any supplements at that time. The rash still occurs every once in awhile, but it doesn't itch much. I even had the doctor check for Lyme disease. You are not alone... hang in there. DEB
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Postby poohhel » Sun Apr 08, 2007 2:58 am

carbuffmom...it turns out I was having a severe allergic reaction to the gabapentin my neurologist put me on to help with the neuropathy... docs said the supplements compounded the reaction... it got so bad my face, lips, tongue, throat, feet, and hands swelled up (several hours after not taking anything else) and I ended up in emergency room for a few hours. OMG if it isn't one thing its another, now for the time being I have nothing to help with the pain of all this bs. Frustrated as hell.
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Update to Allergic Reaction

Postby poohhel » Thu Apr 12, 2007 1:52 pm

So I was told this rash and itching was an allergic reaction to the gabapentin, but here it is 7 days since stopping ALL medications and supplements -- I wanted to clear everything out and start over -- but I STILL have rash and A LOT of itching....It is driving me nuts. I was told to take Benadryl but that does not seem to help... :roll:
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