looking for help
 

My mom has extremely bad neuropathy from taking statins. She has been off statins for years but the neuropathy started showing up a few years ago. She is taking gabapentin for the burning pain at night. She was put on Lyrica in October but it wasn't helping and made her feel like she had the worst flu of her life.

I am writing to find out what other people have found to be helpful. At present, she does not sleep well and has to get up multiple times each night. She is lucky to sleep well 1-2 nights a week. I would like to hear from people who either take supplements and/or have tried other treatments that do not involve taking more prescription meds.

Thank you for any advice you can provide.

I am so sorry. Many doctors do not know or if they do they do not talk about healing the nerves so many people do not understand how to do that. The supplements we talk about can help the smallest of veins for the micro circulation that slowly heal the nerves if brought back, sugar and carb restriction, gentle exercise to help bring oxygen to the nerves, staying away from toxins in meds and other chemicals is important too. Hyperbaric is good also to bring oxygen to the blood vessels for the nerves.

If you have an integrative MD, they usually know much more about everything.

Alpha Lipoic Acid, Benfotiamine, B12, l Carnitine, fish oil and others can help. They have healed me very well.

We often forget about sugar and carbs. Even if not diabetic, sugar is not good. I am not diabetic at all but my integrative doctor told me to get off of sugar. That has been amazing. :)

B12 (Methylcobalamin)
RLA (stabilized R-Lipoic Acid)
ALC (Acetyl L Carnitine)
B5 (Pantothenic Acid)

All taken on an empty stomach. The last 3 work in conjunction.

Doc

i have tried and had success with the burning and throbbing pains while laying down at night. Vitamin B1, interferential therapy ( a type of electrical therapy) and lately benedryl have all helped.

Oh, I am sorry to be late here. Its been a busy day!

The primary supplement for statin users is CoQ-10. The statins dramatically reduce this nutrient that we make for ourselves, and if it is not supplemented generously when the statins are used, then damage may result. This varies from person to person, but now that the secret (that Big Pharma kept for over a decade) is out.... CoQ-10 is a MUST.

We need to know more about your mother. How old, diet, and tests she has had.

CoQ-10 has to be given in a form that is absorbable. The aqueous forms cost more, but are more effective.
This is an example:
http://www.epic4health.com/noname.html
100mg a day of this may help...but it will be a slow thing.

Other issues may be present, so please supply more details about your mother. Testing for diabetes? Testing for B12 with result provided? PN is such a huge problem with so many triggers, that a simple answer is just not possible without more information.

The common drugs like gabapentin may reduce some symptoms but they do not heal you. My goals here are to help heal people from damage so they eventually won't need reliance on so many drugs.

Poor sleeping may indicate that B12 is low. B12 is a cofactor in the brain for melatonin, which is the sleep hormone. So anyone with long standing PN should get a B12 level done at the doctor's and post the numbers here. Doctors may say...."normal"...but lab ranges in US are very low and NOT normal. Hence report the results here so we can look at it.

I wish B12 levels were stadard like Vit D is now. So many problems could be avoided. Especially as people age.

Diabetics that take Metformin need this. I know someone on it and their doctor has no idea they need b12 levels checked since that drug makes some people stop absorbing it.

My mom's B12 levels have been normal but I will look up the exact levels. She is not diabetic. She has been checked numerous times. She is no longer taking statins. She has been able to reduce her cholesterol levels with fish oil and diet mostly. She tries to exercise but lately she has been too tired. Her sleeping patterns at night are becoming so interrupted that she has very few nights that she sleeps well. I would love to know how much of each supplement she should begin with.

Has anyone found relief in TENS therapy or acupuncture?

At this point we are open to trying different options.

I've tried TENS, but it only works while the unit is on - no residual effect for me.

Here're some daily amounts that should be ok unless your mom exhibits some sensitivity to one or more of them:

B12 (Methylcobalamin) - 1000 mcg (1 mg) since her level is "normal"
RLA (stabilized R-Lipoic Acid) - 100 mg (she could try doubling this, but it may agitate some folks)
ALC (Acetyl L Carnitine) - 500 mg
B5 (Pantothenic Acid) - 100-250 mg

All taken on an empty stomach. The last 3 work in conjunction.
These last 3 worked really well for me (YMMV).

HTH,

Doc

Does your mother take other medications? Some common medications deplete nutrients.

When was that B12 test done? I would like to see the numbers before giving you doses for the B12.

Is your mother getting up to urinate? Because of pain, or some other discomfort?

My doctor's rule is one night time visit to the bathroom is normal in older patients. More frequent visits indicate, hypertension or cardiac or diabetic problems developing.

I find that now that I am older, I tend to go to bed EARLIER than I used to. In fact I used to work nights most frequently. So if I go to bed before 9pm, I do get up at 1-2 am to visit the bathroom. Some days, I get back to sleep and other nights not.
You'll see me online during the "not" times! ;)

I'd start CoQ-10 now. If you get the new aqueous form 100mg a day should be enough. If you buy one of the older, oil based soft gel cap, higher doses are needed because those are less absorbed. Say 300mg a day. I gave you a link to one brand. You can Google "water soluble CoQ-10" and find others. CoQ-10 strengthens the heart muscle and reduces heart failure, and blood pressure, and can help with night time bathroom visits.

All the time your mother took the statins, they blocked her liver's enzymes that synthesize CoQ-10 in the body. So all the systems would have been impacted, and perhaps damaged, over time. I'd start the CoQ-10 first, using a good product and see if her energy returns. It will take a while though.

B12 if low, will result in insomnia. She can try 3mg of Melatonin at night to see if that works. If it does, it points to low methylcobalamin in the brain, which is the cofactor in converting serotonin to melatonin.
This is blocked by some drugs too, Prozac and beta blockers mostly.

Thank you for the information. Do these supplements help with the burning pain experienced at night with neuropathy? Are there any other things that people have had success with to decrease these burning pains at night?

Yes, that's the main reason I take them. RLA made the single biggest difference for me; the others augmented it.

Doc

Taking the supplements only work, for those who need those specific supplements.

Burning can also come for foods in the diet. I found for myself that nightshade vegetables, especially potatoes, were my biggest trigger. Some tomatoes also do it in strong sauces.
Nightshades are : potatoes, tomatoes, peppers and eggplant.

Also very spicy foods can cause burning. And MSG additive will increase pain as well. This is because glutamate stimulates pain receptors.

What works for one person may not work for another. It depends on your metabolism, and medical history. And your mother's had years of damaging statin drugs.

Quality supplements are expensive, and CoQ-10 especially.
It would be best to start simply and add in things as you go.
Otherwise you won't know which is working or not.

Drug damage typically responds to CoQ-10, acetyl carnitine, to start. R-lipoic acid stabilized is for those with blood sugar problems, but can be added to the carnitine for mitochondrial help. That is up to you to decide.

We discuss all of these here, and you'll have to search them and read up and see if they are possibly for your Mother. People using lots of supplements should have good kidney functions.
So check with your mother's doctor before doing anything extreme. CoQ-10 and carnitine are often used in the elderly who have severe medical issues, but it is best to discuss with the doctor before doing anything. Hopefully the doctor will know what you are talking about... but some do not have any experience at all with these things, even though they appear in medical papers and studies.

When I came in this forum the burning in my feet and arms was very bad. After reading about the benefits of VitB12 (methylcobalamine) here I started on 2500mcg last january and increased it to 5000mcg even my vitb12 result was 900 something. After a month. I started on CoQ10 100mg and Benfotiamine 150mg. Since March 15 till today I have not experienced the burning. Thank God. I still have the other terrible and horrible pain of PN but at least its one symptom down. I believe the vitb12 including the other supplements have done it. I pray that the supplements I added recently will further reduce my other symptoms.