B-6 vitamin danger!

Posted by Lynsorensen @lynsorensen, Dec 11, 2017

With the assistance of a neurologist at Mayo Clinic, I have almost completely eliminated the uncontrolled muscle spasms now. First and foremost: beware of taking multi-vitamin capsules that have B6 listed. B-6 overdosage (which is contained in every multivitamin I found in stores and on the internet) can cause loss of muscle control and spasms in some people. So can gluten found in many foods so now I am also gluten free. I now work out with a personal trainer 3 days a week and do water aerobics another 2 days. Got off gabapentin and also clonazepam. Using CBD oil capsules each morning (no more opioids or chemicals) and using a CBD topical ointment to rub on my leg muscles each night. He says I don't need him anymore! And I don't. No more shaking or muscle cramps or pain. Still a little numbness but that is receding also.

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All my B vitamins were in toxic levels other than thiamine which is low. Discontinued multivitamins and just taking a B1 vitamin. My pain is ways out of control. Side effects from everything except gabapentin but can only take a high as 1,000 mg daily due to dizziness and Tylenol arthritis for pain. My feet are always on fire and can't tolerate wearing socks.

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@marquis113

All my B vitamins were in toxic levels other than thiamine which is low. Discontinued multivitamins and just taking a B1 vitamin. My pain is ways out of control. Side effects from everything except gabapentin but can only take a high as 1,000 mg daily due to dizziness and Tylenol arthritis for pain. My feet are always on fire and can't tolerate wearing socks.

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I wish something simple like Gabapentin worked for me! It messed with my cognition. All 5 of my siblings have settled on Gabapentin, but for some reason I had to be different.

Have you found things that give you temporary relief? It sometimes makes a difference if we can get a break from the pain, even for a short time. I know too well how chronic pain affects mental health. It's a vicious circle for me with pain and depression. I'm thankful for a therapist I can talk to every other week, and for doctors who understand and are willing to work with me. We can't do this on our own.

Jim

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My B6 is labeled as Pyridoxal 5’- Phosphate. Guess I gotta ask my naturopath what that translates to, unless anyone out there knows. Boy do I feel better now that I stopped the B Complex w B6! (I already have B6 in another B supplement)

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@jimhd

I wish something simple like Gabapentin worked for me! It messed with my cognition. All 5 of my siblings have settled on Gabapentin, but for some reason I had to be different.

Have you found things that give you temporary relief? It sometimes makes a difference if we can get a break from the pain, even for a short time. I know too well how chronic pain affects mental health. It's a vicious circle for me with pain and depression. I'm thankful for a therapist I can talk to every other week, and for doctors who understand and are willing to work with me. We can't do this on our own.

Jim

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Aspercreme with lidocaine really helps me sleep at night. Also use lidocaine patches for my back. I can only take Tylenol arthritis as antiinflammatories affect my kidneys. Also use the aspercreme during the day to calm things down. I have had side effects from everything other than the gabapentin so I'm stuck with that. If not happy change your neurologist. Mine has done nothing for me other than biopsy to confirm small fiber neuropathy. Also have L5 neuropathy due to a bad surgery. Waiting to see my new Neurologist but have to wait 2 months.

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@jr2023

My B6 is labeled as Pyridoxal 5’- Phosphate. Guess I gotta ask my naturopath what that translates to, unless anyone out there knows. Boy do I feel better now that I stopped the B Complex w B6! (I already have B6 in another B supplement)

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I would stop all B vitamins

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@ray666

This discussion has me reviewing my thoughts on B6. A half year ago, my neurologist invited me to try EB-N5, a medicinal food containing the water-soluble form of B6, pyridoxal phosphate, which he assured me (and it has since been confirmed by other doctors) is a form of B6 that does not lead to toxicity––unlike pyridoxine hydrochloride, another form of B6, found in food and supplements, that can lead to toxicity. Thus far, I've been taking EB-N5 with no discernable ill effects. What has me wondering, however, is the B6 I've been getting for years from the usual supplements many of our doctors recommend: B1, B6, B6-Complex, B12, and a multivitamin. I'm wondering if the taking of those B6s for several years now have contributed to the high level of B6 that my recent labs have shown. I would like to continue with the EB-N5 (pyridoxal-5-phosphate), but perhaps cut out the supplements containing B6 (pyridoxine hydrochloride). I have more labs next week, followed by a meeting with my neurologist. I'll discuss this with her. –Ray (@ray666)

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Ray666 how are you doing these days? Are you still taking the supplement and if so has there been any improvement?

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@jimhd

I wish something simple like Gabapentin worked for me! It messed with my cognition. All 5 of my siblings have settled on Gabapentin, but for some reason I had to be different.

Have you found things that give you temporary relief? It sometimes makes a difference if we can get a break from the pain, even for a short time. I know too well how chronic pain affects mental health. It's a vicious circle for me with pain and depression. I'm thankful for a therapist I can talk to every other week, and for doctors who understand and are willing to work with me. We can't do this on our own.

Jim

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Hi Jim, I couldn’t take Gabapentin, Lyrica or Cymbalta. I’m very sensitive to medications and these weren’t for me. Someone on here recommended taking R-Alphoic Acid 600 mg 3 a day. Also to take PEA 600 mg 2X day. I am on my 2nd month and feel it is starting to help. Do some research on them and see what your dr says.

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@myggle1950

Hi Jim, I couldn’t take Gabapentin, Lyrica or Cymbalta. I’m very sensitive to medications and these weren’t for me. Someone on here recommended taking R-Alphoic Acid 600 mg 3 a day. Also to take PEA 600 mg 2X day. I am on my 2nd month and feel it is starting to help. Do some research on them and see what your dr says.

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Thank you for mentioning it. I've seen that a lot of people here use ALA. I'm going to talk with my doctor about several supplements when I see him again.

Jim

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@marquis113

Aspercreme with lidocaine really helps me sleep at night. Also use lidocaine patches for my back. I can only take Tylenol arthritis as antiinflammatories affect my kidneys. Also use the aspercreme during the day to calm things down. I have had side effects from everything other than the gabapentin so I'm stuck with that. If not happy change your neurologist. Mine has done nothing for me other than biopsy to confirm small fiber neuropathy. Also have L5 neuropathy due to a bad surgery. Waiting to see my new Neurologist but have to wait 2 months.

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I'm one of the fortunate ones to have a very good team of doctors. I've been working with my neurologist for quite a few years. He and his staff are proactive about my care, as is my PCP. The pain specialist listens to me and believes what I tell her, rather than minimizing my chronic intractable pain.

In the past, doctors have used my CIDP as a handy thing to blame for whatever ailment I had. "Oh, it's probably the neuropathy causing the symptoms." Or they didn't see past my mental health challenges. I'm thankful for the ones who see me as a person.

Jim

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Yet to find a doctor that will listen and try to figure things out. Send you to a specialist and they just refer you back.

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