Neuropath [ will never go away]

[Grannygood]

[b]Read your paper on neuropathy,cannot take coq 10 get very bad headaches on it. It has now been 8 months since I've been off statins and only the numbness in my feet remain, and lately it has gotten so bad I can't sleep at night, if I do to much physical activety during the day or go shopping and have to walk a long distance it's worse. My doctor is after to go back on statin and that is never going to happen, spent a small fortune last year on doctors and tests. I am resigned to suffer for the rest of my life.[/b]

[Darrell]

I find that my leg and ankle ache problem is somewhat improved by wearing a 15-20 mmHg medical-grade compression stocking during the day. You can get a pair at a good department store, drug store, or online (e.g., CVS or search Jobst or Ames Walker). My theory is that the muscle problems also cause some vascular problems with the vein valves. Try it during the day for one foot and see if that foot does better at night. I know more than I want to about not sleeping due statin leg/foot damage, so I'll be rooting for you.

[vipergg22]

[quote="Grannygood"][b]Read your paper on neuropathy,cannot take coq 10 get very bad headaches on it. It has now been 8 months since I've been off statins and only the numbness in my feet remain, and lately it has gotten so bad I can't sleep at night, if I do to much physical activety during the day or go shopping and have to walk a long distance it's worse. My doctor is after to go back on statin and that is never going to happen, spent a small fortune last year on doctors and tests. I am resigned to suffer for the rest of my life.[/b][/quote]

I have some relief in taking benfotiamine at 600 mgs a day . It is form of thiamine . Google benfotimaine, and neuropathy and you can read up on it .

[catspajamas]

I am on benfiotiamine too...but I think my pn is gradually getting worse...also have vasculitis that came while on zocor...put the 2 tog. and you have pain....I was on neurontin but that didn't help much...now on lyrica which is very expensive...it helps a little better but am on a small dose...I sympathize cause the pain in your feet is almost unbearable...had many sleepless nights...I also rub my feet with biofreeze(can order on internet, punch in biofreeze...that helps some...the bottom of my feet just burn and some days its hard to walk...statins took my active life away....it has been 5 years since I am off zocor...I see no relief in sight.......

[Biologist]

catspajamas,

First, I'm sorry to hear things are not going very well right now for you.

I do not remember your history off hand for why you were on statins in the first place, but I got a hunch you never should have been -- being female being one good indicator. Very obviously in retrospect it was a bad dicission any way you look at it. However, if it was the same doctor who prescribed the Neurontin, he needs some big time remedial medical training, in my opinion. It his HIGHLY likely you never should have been on Neurotin either. I have selected some excerpts below, but the whole investigative report, while depressing and disgusting, appears to be a good model for how all of us got hurt by statins.

[http://counterpunch.org/pringle02232007.html]

Risks Kept Hidden for Years
The Neurontin Suicides
By EVELYN PRINGLE

"...the company engaged in a marketing program"to induce physicians to prescribe Neurontin, for medical conditions for which the FDA had not approved Neurontin to be used."

"That program, the complaint charges, included (a) illegally promoting the sale and use of Neurontin for a variety of conditions "for which defendants had not performed the required FDA testing or established safety and efficacy;" and (b) offering and paying illegal remuneration to doctors, "either directly or through third parties, to induce them to promote and prescribe Neurontin for off-label uses."

"On May 17, 2004, Andrew Finkelstein, of the New York law firm of Finkelstein & Partners, submitted a citizen's petition to the FDA requesting that a black box suicide warning be added to the label and that a Dear Doctor letter be sent out to instructing physicians to be on alert for increased depression in patients taking the drug."

"By Mr Franklin's estimates, as much as 90% of prescriptions for Neurontin were written off-label as a result of the illegal scheme which prosecutors claim dates back to1995. To back up his allegations, Mr Franklin offered a voicemail he saved from his boss that stated:

I want you out there every day selling Neurontin... holding their hand, whispering in their ear, Neurontin for pain, Neurontin for monotherapy, Neurontin for bipolar, Neurontin for everything. I don't want to see a single patient coming off Neurontin before they've been up to at least 4,800 milligrams a day.

His boss concluded by stating: "I don't want to hear that safety crap either. It's a great drug"

As a whistleblower in a case to recover federal funds, Mr Franklin was entitled to a percentage of the settlement and received $24.6 million."

____________

Biologist

[vipergg22]

[quote="catspajamas"]I am on benfiotiamine too...but I think my pn is gradually getting worse...also have vasculitis that came while on zocor...put the 2 tog. and you have pain....I was on neurontin but that didn't help much...now on lyrica which is very expensive...it helps a little better but am on a small dose...I sympathize cause the pain in your feet is almost unbearable...had many sleepless nights...I also rub my feet with biofreeze(can order on internet, punch in biofreeze...that helps some...the bottom of my feet just burn and some days its hard to walk...statins took my active life away....it has been 5 years since I am off zocor...I see no relief in sight.......[/quote]

Certainly feel for ya cats , you sound exactly like me with the PN in both feet . Benfotiamine helps but certainly doesn't cure it but would be a lot worse if I didn't take it . Advil helps some too but i don't want to take that everyday either. Neurontin was worthless , made me like a walking zombie ....

[mgguy]

I also have burning and stinging in both feet, I believe caused from taking Lovastatin for over 3 years. Have been off for 6 weeks but still have symtoms. I talked to UC Santa Barbara Statin Study director and he said it can take an average of 10 weeks to several months before any relief is felt. I've been taking Q10 and just today began taking acyte L-cartintine. I wasn't aware there were any side effects of the latter, but I will just have to wait and see. I'm hoping that this begins to go away soon, though it is not so bad as to interfere with any activities. Its just annoying.

[Darrell]

Carnitine is primarily for muscle problems. Not sure it will help any with straight neuropathy.

[cjbrooksjc]

Darrell: Sorry I can't recite the thread or even the site where I read this, but I did read that Acetyl L-Carnitine was more effective for targeting neuropathic damage and straight L-Carnitine was better for muscle damage. I believe it was the Life Extension Foundation or the On-Line Medical Dictionary and not one of the threads referred to in this forum.

Regards,

Brooks

[catspajamas]

In other words neither neurontin or lyrica should be used for perif. neurapathy pain..?..It has been 5 years since I was off zocor..I was on zocor for 4 years ...I kept showing the dr I had(i fired him)..the inserts that comes with the meds the side effects I was having...he said no..it couldn't be so dummy me kept taking it...it took 2 trips to mayos and finally getting shingles to realize it was the zocor...I looked back at my cholesteral reports.(I always get copies of any tests done for my records here at home)...guess what my cholesteral was when I first went on zocor? ....229....it was my triglycerides that was 450....Since off statins my cholesteral has evened out between 200 and 230...I cut sugar out of my diet and my triglycerides are normal....nope..I shouldn't of been on statins in the first place...I go to my vascular specialist next week...I sure need something for pain...I am wondering what he would suggest if I told him I didn't want neurontin or lyrica....and most important where would my pain level be without the lyrica....I am afraid to find out.....

[Darrell]

Acetyl L-Carnitine is notable for being able to cross the blood brain barrier and could in theory help with statin-related brain cell damage, but there is no reason I know that it would be particularly useful for nerves in the feet. Anyone? Biologist?

[mgguy]

I too read that Acetyl L-Cartintine was good for PN. What is it about just Cartintine that makes it better for this? How does the latter work? Has anyone used either of these for PN with any benefit? Has anyone else had the burning/stinging in feet last longer than 6 weeks after stopping statins? I really don't know what to expect at this point, and would appreciate any experience anyone can share. Thanks.

[vipergg22]

It has implicated that l carnitine could help in pn , just google acetyl l carnitine and neuropathy for further info .

[cjbrooksjc]

MgGuy: In my reads of this forum (various category topics) I found MANY entries that referred to burning/itching, even blistering and peeling feet. It seems to be one of the most common complaints, though I never experienced it personally. Just read thru some of the posts; I'm sure you will find a kindred spirit or ten.

Regards,

Brooks

[cjbrooksjc]

Mgguy: Here is another bit of information to add to the mix and confusion about the Carnitine family:

From the Life Extension Foundation:
Q. What is the difference between Acetyl l-carnitine and l-carnitine?

A. Acetyl-l-carnitine is the acetyl ester of the amino acid l-carnitine. Acetyl-l-carnitine is absorbed into the bloodstream more efficiently than l-carnitine, passes more easily through cell membranes and is utilized more efficiently in the mitochondria of the cell.

Well, who knows, but from this bit of info it looks like Acetyl L-Carnitine us just L-Carnitine on steroids.

I'll just keep taking both.

Brooks

[harley2ride]

My condition is a little different than most, as I have Mitochondrial Myopathy (caused by Crestor), which started out as Myopathy/Myalgia. While the COQ10 and Acytel L-Carnatine did help some, and then I was put on Welbutrin (which helped some), then Lyrica which helped more, then NADH which also seemed to make some difference, I've noticed that as long as I take all of them, I do pretty well. But if I leave out any one of them for any period of time, I get noticably worse. Also, I switched from taking seperate COQ10 and L-Carnitine, to now taking a product called MITOCH, which has COQ10, L-Carnatine, and other ingredients, it seems to have made some difference as well, not to mention, that I'm saving about $50.00 a month and taking about 1/2 the amount of pills I was taking on a daily basis. All of this was approved by my doctor. Before on a scale of 1 to 10, my pain averaged about 5 - 6 daily. Now it is 2 - 3. Big difference for me. I'm not exactly sure what is doing the most help, but I'm not about to change any of it. I've been doing much better now for at least 3 months. Best three months I've had since being damaged 3 yrs ago.

[SusieO]

Harley if you have posted the answer to my question somewhere else on this board I apologize for asking it again. What type of tests did you have done to diagnose you as having Mitochondrial Myopathy?

thanks!

[harley2ride]

SusieQ,
Lets see. Two years ago, after two EMG's, a muscle biopsy, all kinds of blood tests, and other bodily fluid tests, and an Oxygen exchange test, I was first diagnosed by Dr. Phillips in San Diego, with Statin Myopathy and Neurologic damage. I was already taking COQ10, and L-Carnatine at that time, and he wanted to watch and see if I improved over time. A year later, after no improvement (actually got worse), I was sent to Salt Lake for another Biopsy and another EMG. They looked for more things in this Biopsy, and the doctor in Salt Lake called me and told me that I had cellular level damage from the Statin drug, and that he saw signs of Mitochondria damage. I was then referred to a doctor with the Idaho Elks Rehab hospital who is with the MDA. He diagnosed me with the Mitochondrial Myopathy based upon all the test findings and my progression over the past two years.

[SusieO]

Thanks Harley! So you have traveled to CA, Utah as well as Idaho to see doctors to diagnose you?????!!!!!

I have had an EMG, other tests I can't even remember what they were (thanks to Lipitor taking my memory) and many blood tests, but no one will do a biopsy (they keep saying there is no need since my CPK level is always in the normal range).

My PCP keeps saying I need to go to Atlanta, but you know what...I am so tired of being told "there is nothing wrong, a statin would not do this or just adjust to your new lifestyle and take a pain pill". Plus, I hate for my hubby to have to use his vacation to drive me to so many dr visits.

If I knew of a doctor that would be acceptable to listen to me and do the biopsy and feel YES my problem most likely comes from the Lipitor I would go - but I know of no such doctor.

[cjbrooksjc]

Darrell: See the link below for Acetly L-Carnitine nerve regeneration (re: your ? above)


[http://www.thebodypro.com/journalview/aug04.html]

The second (biologist) url which contains the pointer to 'thebodypro' site should be:

http://www.spacedoc.net/board/viewtopic.php?p=3023#3023

Regards,

Brooks