1. < Neuropathy

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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

dipperlip1 | @dipperlip1 | Mar 12, 2022
In reply to @artscaping "Greetings @timcryan, and welcome to Connect. This is a group of patients and caregivers who help..." + (show)
@artscaping

Greetings @timcryan, and welcome to Connect. This is a group of patients and caregivers who help others with quality of life issues. I would absolutely call nighttime Neuropathy pain something that can impact your quality of life. It can also make you sleep-deprived. So let's have a look. First of all, how long have you had neuropathy? Have you been diagnosed? And has that diagnosis included a skin test biopsy?

I have had SFN small fiber neuropathy for a number of years. Mine is related to trauma accidents and surgeries over the last 50 years. Ever since trying medical cannabis for the pain and tingling and numbness of SFN, I have been able to sleep pretty well. I use a dropper of a CBD/THC tincture that I take before bedtime. Mine happens to be a 2:1 mixture of CBD and THC. Within about 20 minutes I wander off to sleep and wake up refreshed in the morning.

What have you tried? I am not good with opioids or OTC medications. My PCP is very supportive and together we evaluate and plan my daily routine. Because I succumb to anxiety quite easily I also use Duloxetine in the morning to take the edge off the anxiety that can create pain.

In addition to tinctures, I use a CBD:THC topical for both acute and chronic pain.

I am going to have to have some more information from you so that I can refine these suggestions to make them provide the greatest support.

Where on your body is the neuropathy pain the worst?
May you be free of suffering and the causes of suffering.
Chris

Jump to this post

I also had multiple surgeries, lumbar fusion, cervical fusion and both hip replaced.
all within the past 16 years. I can deal with the pain n my feet and lower legs ok during the day but at night my feet feel like the are on fire. my Neurologist put me on Gabapentine and I take 600 mg. at bedtime. I take 600 mg at bedtime to help me sleep. I go to bed with cold and blue feet/toes due to Rauynauds and 1 hr. later my feet are on fire. I use Aspercream with Lidocaine. It helps a little. This has been going on for a long time and I am wondering of it is due to the Gabapentine. Has anyone had the same experiencke? I also have a other rare condition called Erythromelalgia which I developed after my first back surgery in Jan. 2005. Went to Mayo's twice and they confirmed iot. Know what iot is but don't have a cure. Does anyone else has/had worsening symptons due to Gabapentine?

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Mar 12, 2022
In reply to @dipperlip1 "I also had multiple surgeries, lumbar fusion, cervical fusion and both hip replaced. all within the..." + (show)
@dipperlip1

I also had multiple surgeries, lumbar fusion, cervical fusion and both hip replaced.
all within the past 16 years. I can deal with the pain n my feet and lower legs ok during the day but at night my feet feel like the are on fire. my Neurologist put me on Gabapentine and I take 600 mg. at bedtime. I take 600 mg at bedtime to help me sleep. I go to bed with cold and blue feet/toes due to Rauynauds and 1 hr. later my feet are on fire. I use Aspercream with Lidocaine. It helps a little. This has been going on for a long time and I am wondering of it is due to the Gabapentine. Has anyone had the same experiencke? I also have a other rare condition called Erythromelalgia which I developed after my first back surgery in Jan. 2005. Went to Mayo's twice and they confirmed iot. Know what iot is but don't have a cure. Does anyone else has/had worsening symptons due to Gabapentine?

Jump to this post

You mentioned you went to Mayo twice and they confirmed iot but there is no cure. What is iot?

REPLY
12cmgc | @12cmgc | Mar 12, 2022
In reply to @dipperlip1 "I also had multiple surgeries, lumbar fusion, cervical fusion and both hip replaced. all within the..." + (show)
@dipperlip1

I also had multiple surgeries, lumbar fusion, cervical fusion and both hip replaced.
all within the past 16 years. I can deal with the pain n my feet and lower legs ok during the day but at night my feet feel like the are on fire. my Neurologist put me on Gabapentine and I take 600 mg. at bedtime. I take 600 mg at bedtime to help me sleep. I go to bed with cold and blue feet/toes due to Rauynauds and 1 hr. later my feet are on fire. I use Aspercream with Lidocaine. It helps a little. This has been going on for a long time and I am wondering of it is due to the Gabapentine. Has anyone had the same experiencke? I also have a other rare condition called Erythromelalgia which I developed after my first back surgery in Jan. 2005. Went to Mayo's twice and they confirmed iot. Know what iot is but don't have a cure. Does anyone else has/had worsening symptons due to Gabapentine?

Jump to this post

Gabapentin has some side effects to the feet from my experience. I would check further with your pharmacist/doctor.

REPLY
timcryan | @timcryan | Mar 12, 2022
In reply to @artscaping "Greetings @timcryan, and welcome to Connect. This is a group of patients and caregivers who help..." + (show)
@artscaping

Greetings @timcryan, and welcome to Connect. This is a group of patients and caregivers who help others with quality of life issues. I would absolutely call nighttime Neuropathy pain something that can impact your quality of life. It can also make you sleep-deprived. So let's have a look. First of all, how long have you had neuropathy? Have you been diagnosed? And has that diagnosis included a skin test biopsy?

I have had SFN small fiber neuropathy for a number of years. Mine is related to trauma accidents and surgeries over the last 50 years. Ever since trying medical cannabis for the pain and tingling and numbness of SFN, I have been able to sleep pretty well. I use a dropper of a CBD/THC tincture that I take before bedtime. Mine happens to be a 2:1 mixture of CBD and THC. Within about 20 minutes I wander off to sleep and wake up refreshed in the morning.

What have you tried? I am not good with opioids or OTC medications. My PCP is very supportive and together we evaluate and plan my daily routine. Because I succumb to anxiety quite easily I also use Duloxetine in the morning to take the edge off the anxiety that can create pain.

In addition to tinctures, I use a CBD:THC topical for both acute and chronic pain.

I am going to have to have some more information from you so that I can refine these suggestions to make them provide the greatest support.

Where on your body is the neuropathy pain the worst?
May you be free of suffering and the causes of suffering.
Chris

Jump to this post

hello and thank you for answering me . my dr is in in KS and will not prescribe cbd/thc. i tried Duloxetine and it made me deathly ill. Also I have take Gabepentine which only help to get me to sleep but the burning wakes me up'
the neurophathy has been going on for several years now. I have been diagonised but no skin test. The pain/numbness is on the feet and lower legs.
you say you have more info, please state what this is

REPLY
1 reply
timcryan | @timcryan | Mar 12, 2022
In reply to @johnbishop "Welcome @timcryan, I'm sorry to hear you are having more neuropathy pain at night. I'm wondering..." + (show)
@johnbishop

Welcome @timcryan, I'm sorry to hear you are having more neuropathy pain at night. I'm wondering if you might find this discussion helpful -- Neuropathy Pain at Night: What helps?: https://connect.mayoclinic.org/discussion/night-pain-2/

Is the pain mostly in your feet and legs?

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Yes

REPLY
neasrenrut | @neasrenrut | Mar 13, 2022
In reply to @johnbishop "Hi @neasrenrut, I would like to add my welcome to Connect along with @amandaburnett and other..." + (show)
@johnbishop

Hi @neasrenrut, I would like to add my welcome to Connect along with @amandaburnett and other members. Your post was moved to this neuropathy discussion that has posts about calcium, B-6, neuropathy issues - B-6 vitamin danger!: https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/

There is also another discussion that might be helpful
-- Calcium Scan: https://connect.mayoclinic.org/discussion/calcium-scan/

You mentioned your CT scan was 653. Here are a couple of references that maybe helpful with information related to your CT scan results:

--- "Over 400 Extensive evidence of CAD" Cardiac CT for Calcium Scoring: https://www.radiologyinfo.org/en/info/ct_calscoring
--- "The multivariate analysis revealed that the presence of CAD was a statistically significant risk factor for ischemic peripheral neuropathy." -- Prevalence and Risk Factors for the Peripheral Neuropathy in Patients with Peripheral Arterial Occlusive Disease: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4480317/

I'm not a doctor and have no medical training but I'm not sure anyone can answer your first question will the painful neuropathy decrease with lower cholesterol numbers but my guess is that it would take more than lowering the cholesterol numbers. Your second question is really a good and one you should discuss with your doctor. My doctor has wanted me on statins for a long time but I'm not about to start them because I have neuropathy and do not want to make it worse. I might think differently if I had a condition that would put me in a higher risk. Then I would have to weigh my options and discuss with my doctor. There are things you can do to lower cholesterol naturally but you really have to work at it. Mayo Clinic has a good place to start - https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/reduce-cholesterol/art-20045935

Are you on any treatments for your Hypercalcemia?

Jump to this post

Ty

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Mar 16, 2022
In reply to @timcryan "hello and thank you for answering me . my dr is in in KS and will..." + (show)
@timcryan

hello and thank you for answering me . my dr is in in KS and will not prescribe cbd/thc. i tried Duloxetine and it made me deathly ill. Also I have take Gabepentine which only help to get me to sleep but the burning wakes me up'
the neurophathy has been going on for several years now. I have been diagonised but no skin test. The pain/numbness is on the feet and lower legs.
you say you have more info, please state what this is

Jump to this post

Good afternoon @tincryan, I am sorry that you are not able to try medical cannabis to help you at night. Gabapentin helps calm down the tingles and numbness in my hands. Yet I have only found relief from medical cannabis. Has your clinician talked with you about 'SFN (small fiber neuropathy)? Do you have an educational medical center near you in KS?

I see that you have had some significant discussions with @johnbishop and others. Unfortunately, I have relied on medical cannabis for several years. The only other nighttime medication that helped me was Nortriptyline. Perhaps it would be worth seeing how your clinician feels about that medication.

Here is the current status of cannabis in KS. It does look like there may be some improvement in the laws in 2022. "The 2022 session has convened, and medical cannabis is on the agenda for the Senate. Just before the legislature adjourned its 2021 veto session, the Kansas House of Representative approved a bill that would legalize medical cannabis. The bill has picked up where it left off — to be considered by the Senate. Originally, the bill was to be heard in the Senate Federal and State Affairs Committee. The Senate President has moved the bill to the Senate Interstate Cooperation Committee, which he chairs. It has not yet been scheduled for a hearing."

May you be safe, free, and protected from inner and outer harm.
Chris

REPLY
1 reply
rtwothree | @rtwothree | Apr 2, 2022
In reply to @nydiver59 "Hi all, I’m new to the group and hope to find some answers. I was diagnosed..." + (show)
@nydiver59

Hi all, I’m new to the group and hope to find some answers. I was diagnosed in January with high levels of vitamin B6, per the lab sheet normal is 5.3 – 46.7 ug/L and I was at 93. I had been having burning sensations/pain on my hands, feet, face and sporadically on other areas for quite a while. I visited several doctors and finally ended up at an allergist office (he’s the first one to think to test for B6). He felt the B6 was causing peripheral neuropathy. His advice was to stop taking all vitamin supplements and protein shakes and retest in 3 weeks. I spent the last month drinking 90 oz of water per day and really trying to limit my B6 intake. Fast-forward to last week and the blood work came back with normal B6 levels, 22 ug/L. I guess the questions at this point are; how long does it take for the symptoms to resolve and what follow up should I be doing?

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I've been drinking energy drinks for years that add high amounts of B6 and B12. Few months ago I stopped drinking the energy drinking and started taking 5000mcg of B12 everyday ( idiotic right?) And started noticing warm sensations in my feet and hands. Just curious, have your symptoms gone away? If so, how long did it take?

REPLY
terrilea57 | @terrilea57 | Apr 3, 2022

For those who have taken b6 supplements:
Check out this website.
http://Www.understandingb6toxicity.com
There is a connection with small fiber neuropathy.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Apr 3, 2022
In reply to @terrilea57 "For those who have taken b6 supplements: Check out this website. Www.understandingb6toxicity.com There is a connection..." + (show)
@terrilea57

For those who have taken b6 supplements:
Check out this website.
http://Www.understandingb6toxicity.com
There is a connection with small fiber neuropathy.

Jump to this post

Welcome @terrilea57, Thanks for the reference link. Have you also been diagnosed with neuropathy?

REPLY
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