PN symptoms from supplements and vitamins?
 

I know that too much B-6 can cause PN symptoms. Is there any other ones that we people with PN take most often that can cause these symptoms under certain conditions as well?

Two weeks ago I spent a couple of days in Christiansburg with my daughter. We were pretty busy. I didn't take my vitamins at all. And when I got home I'm not sure why but I simply never started taking them again. All of sudden, a few days ago, I noticed that my PN symptoms were about gone. The worst I've experienced is a bit of buzzing or tingling in my feet. And I can walk a good distance and no pain. Even the pain in the joints of my big toes has gone away. I don't get it.

Could Magnesium do this? If you really didn't need it? I'm very puzzled by this. I began taking my vitamins again two days ago. I'm now taking a different form of B-12: Sublingual 'dots' rather than the oral pill form. 1000 mcgs once a day. Also, with the sublingual form, does this have to be taken on an empty stomach as it does with the pill form? Let me put these in a more friendly form for easier reading.

These are total daily amounts:
B-12 - 1000mcg
Vit-C - 1000mg
Vit-E - 400iu
Garlic Oil - 1000mg
Fish Oil - 2000mg
Vit-D - 400iu
Folic Acid - 800mcg (too much for the amount of B-12?)
Rolaids - Minimum of 2 (1080mg of calcium) Extra Strength per day.

Slow-Mag - two a day - Discontinued.
B-12 - 2500mcg - Backed down to 1000mcg.
B-Complexes - Discontinued.

I suspect one of the last three above. Instinct or maybe I remember reading something that is triggering a cautionary reaction.

Anyone have any ideas? There is also this, I've been off the Effexor for well over a month now. And the RLS type symptoms seem to be gone. I figured it was the Effexor causing this. I had the same problem with Celexa. It's always been a question in *my* mind as to whether or not I actually have PN or if it was actually induced RLS from the Effexor. The way they describe RLS symptoms it seems mine could be either one, PN *or* RLS or perhaps a bit of both?

I have Medicaid (actually Medallion, a step up from Medicaid) and I suppose I could start pushing this and begin making the rounds of the specialists. I really can't afford that even with the medical bills being paid for for the time being. It's the gas and the fact that my BF's vehicle appears to be on it's last legs transmission wise. Anywhere my doc might send me outside of our immediate area is at least an hour away and the majority are much further. I just don't know what to do. And I think part of me is scared to find it is PN, for sure. Mind over body is kind of what it is for me. If I remain convinced or at least in reasonable doubt as to what this is...well, it's a psychosomatic thing for me. I do treat my feet as if it could be PN. So I'm not in denial at least not that deeply. ;)

Barbara

I wonder about the same things knowing what the B-6 deficency and to much of it has done to my body. Let me know if you get any answers. Getting it right isn't easy. I have to go through a lot of blood tests every month just to try to see where my levels are.

Mrs. D is on vacation--
 

--so I'm not sure, with limited connectivity, when she would jump in, but both she and Rose have talked about people who have trouble metabolizing B6--generally due to an enzymatic deficiency--using the P-5-P form of B6, which is coenzymated and much easier to process for such people, who otherwise can have a "build-up" of non-metabolized B6 that their bodies are not processing/eliminating.

It's likely that a number of the reports of B6 toxicity in the literature--at least among people who aren't taking grams of it each day--involved people who did have such enzymatic deficiency and built up toxic levels over time.

Hi

First I need to tell you that this is not my first post as the side bar will indicate. I have been a member of braintalk for year and the Neuropathy Association before that. However my daughter deleted cookies and temp internet files and my password went with it. I tried to sing o again and it would not allow me to post. So I signed up again with a different email account and now I can post again.

I too, had some issues with this. I recently saw my neuro who looked at my list of suppliment and told me that it always worried him when someone took a b-complex and a multi. He said he wanted to check my B-6 level. Sure enough my B6 level was elevated and he asked that I not take anything that contained B6 and to check the labels of other suppliments and see if there is anymore hidden in something else. I told him I took B6 (and vit E) back in the 80"s and 90" st th suggestion of my gyno for pms symptoms and he said he has found gyns to be the biggest cause of excess b6 in his patients.

anyway, I stopped the multi and B-complex 50 and my pain levels have greatly diminished. For the record, the b6 was the P-5-P form. Barbara and anyone, I would suggest asking for a bloodtest to check your B6 levels...it made a difference to me. Now my problem is that I am tired (I think the multi wa helping with that)

Dorothy

Hi All

All I can say is I take 5000 of the methyl b-12 sub linqual (melting pill) under my tongue in the a.m. on an empty stomach. That's what I was told to do and that's what I do. I went from PINS AND NEEDLES, AND BURNING 24/7 to slightly burning once in a while if the temperature is not cooperating. Also if I sit for longer periods, my feet can burn but that is not always the case.

So in my particular situation B-12 was a godsend. Some days I even take two of them. That's 10,000 mcgs of the methyl on some days. But every single day I take at least one 5000 pill. Been the best thing I ever did.

That, and I keep my blood sugar as perfect as I can get it to be. I do not cheat, I do not eat what I'm not supposed to eat. I drink plenty of water. I eat my protein. I take in no sugar. I do not want this PN to get any worse, so I do whatever I can do to NOT MAKE THAT HAPPEN.

Now I know people who smoke and have emphasema, I know people who smoke who have cancer (I do not understand this at all). I also know a person who had a mom who had diabetes, took injections during the day, whe was told to "stop drinking all that coke". She never stopped. She drank coca cola all day long and ate twinkies, fudge pops and cupcakes (all day long). She would go to the doctor and he would try and explain to her "you cannot do this, you have diabetes)" She did not listen. She was admitted to the hospital with a foot ulcer, it became gangrene, they cut off her foot, they cut off her calf, they ultimately cut off her entire leg. Did she stop drinking the coke, and ice cream and cupcakes??? Not on your life.

She was 53 years old and she died 6 months before my friend got married.
I would like for someone to explain to me how a person can get one of their limbs cut off, then come home and start eating cupcakes again. I do not, for the life of me, understand this way of thinking. I understand that we self-medicate with various substances (I used to do this with snacking at night), but a lightbulb went off in my head, and I re-evaluated my way of eating and I, well for want of a better terminology, am in recovery, I guess you would call it.

But how come some people (even though they get a disease), just continue to smoke, drink, or eat cupcakes (and they had a leg cut off!!!).

I understand addictions, I really do. My son has one, my friends have their various addictions. But to stay in the hospital for months, having parts of your limb and then the whole limb removed, and then come home and give yourself 3 shots of insulin a day, and then buy bottles of coke, well, I don't get it. I wish someone would explain this to me.

I now am going through a sad event with a close friend who has stage 3 lung cancer. She now has a home care attendant. She is on fentanyl, vicodin, and xanax. She is anorexic. All her life by the way. The doctor told her mother. "The cancer is not what is doing your daughter in, the anorexia is"

I guess there are addictions to eating, and there are addictions to not eating.

But it costs lives. I just don't get this way of thinking.

Melody

It may be a coincidence. Or you may be one of those who (as Glenn posted) cannot metabolize the cheap, synthetic pyrodixine in most B complex and other supplements containing "B6."

I have mentioned this to Julie, but haven't seen a response.

I hope you both will consider the P-5-P form of B6. A smaller amount of this better form is safer and more effective. And if you cannot convert the pyrodoxine/pyrodoxine hcl you are getting no benefit and it can be a problem.

More information on P-5-P probably can be found on the vitamin forum by mrsd.

rose

Yes, whatever form of B12 you take, if you want to absorb every molecule possible, take it alone.

rose

There is a lot of wisdom in this post. A while back I supplemented with zinc. Then, I noticed that my multivitamin contained zinc, my calcium/magnesium supplement contained zinc, and my good diet alone probably contained all the zinc I needed. The total was well over the recommended maximum for zinc, so I stopped the separate zinc supplement and switched to a ca/mg supplement that contains vitamin D instead of zinc.

I wonder about cutting out the B-complex 50. The safe upper limit of B-6 ( from the iherb health encyclopedia is 100 mg/day ( http://healthlibrary.epnet.com/GetCo...chunkiid=21852 ) with over 200 mg/day possibly causing nerve damage. 50 mg. should be safe. Healthy nerves need a good supply of the B vitamins to function properly. Our damaged nerves need B vitamins more than healthy nerves to function and to heal. As we age, we don't absorb nutrients from our food as efficiently as youngsters. For these reasons, I strongly feel that we PNers need to supplement. A daily B-50 is a reasonable and safe amount of B vitamins for us in my opinion. Additional supplementation of B vitamins is probably not called for.* The tiny amount of B vitamins in a daily multi-vitamin isn't much of a factor and daily multi-vitamins are an insurance policy of sorts.

There is a lot of research that supports that position, research that your doctor probably isn't familiar with. Compared to the rest of the world, American medicine is very drug and surgery oriented, and far less oriented toward healing with diet, herbs, and supplements. So, it behooves us to do our own research and learn from forums such as this.

When two things happen, one after another, we naturally make a connection and perceive that the first thing caused the other. In fact, there may be a causal connection, or not. With PN especially, symptoms fluctuate a lot day to day and hour to hour. Yesterday my feet were very painful, today they are only mildly tingly. I had cereal for for breakfast yesterday and eggs today. For breakfast from now on I'm going to avoid PN-causing cereal and have PN-relieving eggs instead! ;)


*As a complication, a very few of us cannot metabolize pyridoxine, the form of B-6 in our food and in most supplements. For those few of us, supplementation with the p-5-p form of B-6 is necessary. We had a few dramatic cures of PN in people who started supplementing with p-5-p.

I thought the whole point of the sublingual was because it was absorbed faster through the membranes under the tongue. Of course some of it is still going to the digestive track. Ok, back to morning dosing for the B-12, then.

Ah! So the B-6 form that I was taking is possibly not being broken down and used like it should be and is building up. I'll have to see if I can find a formulation of the p-5-p locally and give it a try. I *was* taking what was labeled as a Super-B complex. I can go back to the B-50 complex I was taking before that.

It almost seemed to me that the Magnesium was when the symptoms got worse, on a daily basis.

The entire time I was not taking anything, that roughly two week period, my feet seemed to get better and better as I went along. It took about 3 or 4 days at the start of when I stopped all the vitamins and supplements for the pain to reduce almost completely. I felt guilty and a bit anxious for not taking them. I've noticed things like my fingernails are so much healthier and I don't want to lose those benefits so I began taking what I listed above again.

Yep, Wing, I know what your saying about the symptoms coming and going but even on one of the worst days or worst nights for me it wasn't as bad as it was with the Magnesium or whatever it was that seemed to be triggering the symptoms to get worse rather than better. The worsening for me was a marked change as was the getting better.

Cause and effect I'm well aware of. Especially when one is looking for something, *anything* that might help symptoms get better. If something seems to help I'll try it again. If it continues to help....continue doing it. Sometimes something will work and then the next time not. That doesn't mean it won't ever work again just that there may be other factors involved that weren't there when whatever it was I did *did* work.

It's not just the tingling and burning type symptoms that abated it was the pain in the big toe joints on both feet that have gone as well. As I said, this has been a marked improvement over a fairly short span of time and it wasn't something I was expecting to see. At the time it was more that the symptoms seemed to be getting worse rather than better so why bother with all those mini-meals of vitamins when they didn't seem to be helping but rather the opposite just prior to stopping them. That's what's caused me to look at what I'm taking, again, and wonder if something I had added was causing increased symptoms. My money is actually on the Magnesium or the B-6. The B-12 I'll increase again to levels I was taking before stopping as I've seen no change in symptoms since restarting the B-12. If it was the B-12 even a dose of 1000mcg a day should affect the symptoms. It is possible for me that the B-6 was the start of the problems and the sudden symptoms of pain in the toe joints. And either continuing the B-6 was what was making everything worse or the Magnesium added to it. If I remain stable symptom-wise over the next week with what I'm currently taking I may try adding in the Mag again.

It was just such a marked change and it was consistent from day to day that I have to suspect the vitamins. There's nothing else that's changed.

Barbara

Barbara,

We're all different but I have found two definite, for sure, cause and effects for me.

1) Strong emotion (especially anger) makes my PN dramatically worse, and it continues for days after. Intense pain is a great teacher. I've learned to control my emotions and be accepting of things without reacting.

2) Micro-electric stimulation (the Rebuilder or equivalent) provides relief that lasts for days. During really bad flare-ups, twice a day for two days provides almost total pain relief that lasts for days. Usually, once a week is all I need to be pretty pain free. The down side is that the Rebuilder using the water bath method is a hassle to use, as is lugging the stuff around when we travel, especially now with paranoid security. The Rebuilder looks like a bomb detonator!

I have been taking Jarrow B-right for some time now and this has in its formula both forms of B6. It has 25mg of Pyridoxine HCL and 10 mg of P-5-P. I have never had a blood test to check my B6 level but could this amount of Pyridoxine be causing me harm? Is it worth having a B6 test just to see?

Tony

There's a visual....going through security with your bomb detonator. :cool:

Since joining this board I'm more self aware.... As you say for you strong emotion can trigger an 'attack' that can last for days. Physiologically speaking that makes perfect sense. The body is flooded with all kinds of hormones and substances when strong emotions of any kind are experienced. I'm learning to pay more attention, to notice the things that seem to make my symptoms worse. That's exactly why I caught what was happening. I just still haven't figured out specifically what the trigger or triggers were. Being that if it was stress the trip to see my daughter and all the running around we did *should* have been a major trigger for increased symptoms. In fact the opposite seemed to happen. The only thing that changed over the two week period afterwards ( I went back to eating as I was prior to the trip, etc) was not taking my vitamins. In fact I ate a lot of fast food while there. So there was another trigger that didn't. I've gone over this in my mind and over it. The only thing that I can point to is the vitamins. Everything else should have made my symptoms *worse* not better. Even the lack of vitamins, when taken with the other things should have made things worse, much worse. Not better. So I'm left scratching my head. And the longer I didn't take the vitamins the less the symptoms I had. That was what led me to the conclusions I seem to see. If symptoms increase again now that I'm taking what vitamins I am I'll start a process of elimination. One at a time until I can find the culprit. It could be something silly like the garlic oil. Who knows. But I will find it!

I'm really gonna freak if it turns out it was the fast food and late hours. :D

Barbara

IMO, when in doubt get tested. It's a simple blood test. The only question I have is is the test like for B-12 in that the actual blood level may not be an accurate indicator of either too much or not enough, just on its own?

Barbara

Unfortunately, the B6 test is not reliable.

Problems are very rare with doses of 200 mg per day for a long period of time. Of course there are always exceptions.

If I suspected B6, I would stop all B6. If the B6 is causing a problem, that problem should reverse pretty quickly. Then, when taking B6 in the future I would take the P-5-P type.

rise

Rose
 

It's not that I am ignoring your responses about the P-5-P. It's my ignorance of not knowing what it really is and how much to take and what more or less damage it would do to me. I have been trying to find more information about it with not much luck, although I have been able to research the info on the B-12 and have come to the conculsion that you can't take too much as far as researchers know. But what is a good dosage? I think through reading through some of the responses today, I have figured out how the P-5-P works. But how much to make it not harmful to me? It's a scary thing when it has caused as much damage as I have. I am in severe pain most of the time. I have no feeling from my knees down except for pain and my hands and arms are well on their way too. I get really scared as to how far this is going to go. I am only 46 years old. I am suppose to still have a life and wanted to enjoy my grandchildren more than I am able to now.

Julie, I understand EXACTLY what you are saying. I feel the same way...that I have been robbed of the life I expected to live. I also find it fecinating about the feelings...why is it we cannot feel pleasure but so vividly do we feel pain?

Dorothy

Animals handle pain much better than we do, and they have a lot to teach us. They don't worry about tomorrow, or remember how great it was when they were young or before they got arthritis. Instead, they live in the here-and-now, moment by moment. If they're hungry and are offered food, they eat with pleasure. In moments of respite, they play, not worrying about when the next flareup will occur. Even if its hard for them to get up, they respond warmly and with pleasure to a kind word and gentle caress.

If you are "robbed" of the life you expected, what about the life you have now? What about the life you could have now? Beauty is still out there, as is the possibility of love. A great peach can still be heaven to smell and eat, and great music can still be sublime. Why be robbed of the life you have now, which is real and full of possibility, because of expectations you had which are not real (they are a memory of an abstraction) and have no possibility.

We have no access to the past or future, only the present, to make of as we choose, pain and disability or not. We might not be able to choose being pain free, any more than we can choose be 25 years old again, but we can chose to live a full, rewarding, and fulfilling life, to be happy, to learn, and to be as healthy as we can.

I did buy some Vitamine B-12 tonight, but I had no luck finding the P-5-P B6. Maybe I need to go to a health food store? I will keep looking.

I do try to live my life to the fullest each day. I try to stay positive and cheerful. But you have to be able to get the pain under control in able to concentrate on anything else. My doctor has put me on Lamictal to try to get the pain under control since nothing else has helped (neurotin, Tegretol).

I have mixed feelings on all of this. I do know that blood work can be not accurate like Rose said. I was basically dead the monitor was beeping, I was more then 40 pounds under weight, my hair and eye brows were falling out but blood work good? How? I will say though I do think on some supplements too much can be harmful. I always check with my docs but as we know they know very little. I have asked like 5 and have been told at least 3 things. I also think what works for one with supplements,meds,nutrition won't for another. For ex being 29 and not diabetic compared to a 60 diabetic the needs are way different. Often I think docs don't look into that. That is why I still encourage people here even to look into a nutritionist that has expertise in the area you struggle. I still think Rose and Ms D and other ones should look into a career of that. As for feelings and pain. Like I said that was a huge factor in the program I was at and also learning to have a better quality of life. I know for me I tend to focus on what I can't do or the pain I do have but not from the progress I make. I picked up at the library the Mayo Clinic on chronic pain and it looks into all aspects of treatment. Not only the procedures,meds,pain clinic but emotions. It deals with managing stress,anger,practicing positive thinking,setting goals. I encourage everyone to get it. Being positive is not my strong point before this but really I do think frame of mind has so much to do with quality of life. Now its getting there.

Julie,

Yes, you most likely would need to go to a health food store or order online.

Last I knew, Solgar had a good P-5-P. That "specially coated" one has shown itself effective. 50 mg is a conservative dose of B6, and the P-5-P form is more effective and safer. Again, if I thought I had symptoms of an overload of B6 (and that would be extremely rare under 100 mg), I would stop altogether for a while, and then I would take only the P-5-P form. If the symptoms don't disappear pretty quickly after stopping the B6, it is extremely unlikely that is what caused them.

B12 dose at least 1000 mcg at a time (not timed release). If the form is methylcobalamin, many timed more can be taken safely.

Best wishes,

rose

Julie,

Here is information about B6 compiled by our dear Cara:
http://jccglutenfree.googlepages.com/vitaminb6


And here is an article from Alternative Medicine Review:
http://findarticles.com/p/articles/m..._6/ai_71948217

rose

Wings:

I completely agree with the strong emotion having an effect on the PN.

The other night I was feeling just fine. My son called, (he has loads of problems in his life), and in two seconds, my feet were on fire.

I just told my husband. "I hope he doesn't call for another month".

Boy, what stress does to a body!!!

Melody

Rose, thanks for all your support and information. I am always open to suggestions.

After a bout with increased symtoms due to sudden short term stress....do you have fewer symptoms for a few days after? Or does it just gradually go back to the pre-freak out level? I had a family upheaval right before my trip to see my daughter. In fact that was one of the reasons she insist I come because she felt I needed the break. It truly was fun and wonderful. She took me out for lobster, one of my most favorite foods in the world, we got to see my son's band perform, and attended a Harry Potter party. My symptoms didn't get worse...they seemed to stay the same. It was a couple of days or so after coming home that I noticed I wasn't having nearly the problems I had been.

And now that I'm back on the vitamins again...my symptoms are becoming worse again. :( Today was pretty bad. I took some Tramadol a bit ago and that's beginning to ease it off. *banging head on desk* I just don't know what to do anymore! Sigh. Taking a deep breath. I think I'll go to taking only the B-12, the C, E, and 400 of Folic Acid and see what happens. I've taken the latter three off and on for years with no problems. So we'll see.

I think stress plays a really big part! I took a week off from work last month. Slept as much as I wanted and did pretty much whatever I felt like doing . The pain eased up a bit and I was feeling pretty good. Within a day or two after going back to work the pain was back full force.

When my kids come over with my 2 year old grandchildren, (we have two of them) I get stressed after they have been here a while and start hurting. I love seeing them and being with them. But the noise levels and the constant on the go, just stresses me out.

By the way I searched some more today for P-5-P. So far no one has heard of it including the pharmacist I spoke with today. I will be going to a bigger health food store tomorrow.

Julie--
 

--I think you'd have more luck Googling B6 P-5-P and looking through what you'll find that way:

http://search.yahoo.com/search?ei=ut...c&p=B6%20P-5-P

Most of us get it through on-line sellers.

Hi Jarrett I too have been through a very similar situation with the use of supplements and vitamins.I was taking around 9 different things to try and help my (suspected) neuropathy (I will post a separate message explaining my problem as I am new to these forums).I too, found that some symptoms seemed to be getting worse (increased pins and needles in my hands and feet and increased numbness in my upper back and face).One of the supplements I was taking was calcium and magnesium,I only took this for 4 days but I swear it made the problem worse so I stopped taking it altogether about 3 weeks ago.Now since last week I have stopped taking all my supplements as my back went really numb for some reason and it seemed to happen 30 mins after I had taken a lot of supplements. I also quit smoking (AGAIN!) :-) at the same time just in case that was causing the numbness to become worse. Now 7 days on and the symptoms have decreased a lot, so I guess I am going to start taking 1 supplement at a time and see what happens, im very sure that some of them do make my neuropathy worse.

First remember I have no clue what I'm doing so its a warning. Anyhow I was taking b12 and the b complex and I think it was adding to my dizzy and horrid neck. I still get it sometimes since stopped but not as long or bad. Not sure though. When I asked another forum about this they said I may have an allergy to it? I have no idea but like yesterday I didn't take it and I felt like dizzy so it may have no connection. I was researching the vitamin e and I think there is an upper limit to that which could be harmful. Now I may be wrong but something to look into. Also it may have not been with this but I heard when repairing it can make you feel worse. Like your body is confused. I'm not so with that idea is it seems with pn alot makes it worse now but supposely suppose to help. I'm sorry your having such a hard time too.

That's a relief! Not that you're having problems but that someone has experienced what I'm talking about. So that means it's *not* just all in my head. :D Thanks for that!

Jarrett and Mark...NO it's not
 

in your head...ABSOLUTELY it is not in the HEAD!
One of the things I learned pretty much the HARD way last year was about how B-6 is snuck into other supplements...it was 400x mdr in my multi b complex, in my calcium supplement in my fish oil...AND to make it worse, some vitamins cannot be taken near [time-wise] your pain meds.
It is spelled out in very fine print-I believe in a way not to be noticed and is very hard to find.
In my case, it was well-I used to take my thyroid med...wait 20-30 minutes then take my neurontin equivalent... Well, don't you know in that fine print they should ideally be taken 2-3 hours apart! Or the effectiveness of one or the other will be lessened or increased. And...then they can't be taken anywhere near any calcium supplements or you mite have similar effects/problems.
Docs aren't pharmacists, nor should they be...I suspect what they know of current pharmacological developments come from sales reps...and we all know how neurontin was initially sold then SOLD and not really tested. The initial 'testing' of neurotin was 4 years ago totally anecdotal from individual reports of off label usage from 150 users! Thus WE have to be the 'researchers'. I've cross referenced my med reactions -both common and uncommon and in that process I found out this stuff. Any drug cross check program doesn't include the lesser s/e's and I feel, somehow we are more susceptable to those lesser ones as well as the biggies. Doing the lists to cross reference was a pain where I've already some, but that I found at least 6 cross med/supplement reactions that wouldn't have been seen otherwise. It was worth the effort for my own peace of mind - tho a pain to put into practice
So, when you add supplements, do it ONE by ONE carefully...I've become very careful and suspcious about what I add [what it really is made up of] and when I add a new one, I make sure nothing else different is medically or supplement-wise changed while I try the NEW THING. That way I can more easily discern if it's helping [thru blood tests etc.] and not hurting. It gets confusing. I wish we were plain SIMPLER in what we have to do to try to get well. Maybe we at times...well, try too hard?
I hope this helps - and not confuse things more...we are already confused-Least I AM! - Good thoughts to all and pain free moments a-plenty! - j