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Old 10-12-2008, 06:16 PM
theresej theresej is offline
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Default My B12 Experience - Dramatic results with very large mega doses

It has been a while since posted here, - it was about a year ago that I discovered I have a rare form of vitamin B12 deficiency. Some of the people here helped me find my way through the lack of information in medical practice, to the research which full of information. But even the research I could find did not have all the information I have discovered over the last year - I put some things together and discovered things I haven't been able to find directly addressed in research. Maybe its there, but I haven't found it yet.

To recap my history - the fall of 2004, I developed sudden and severe SOB - the kind you see in pulmonary hypertension. I refused to have it diagnosed as I had a friend in the hospital with the condition and didn't want to end up the same way. I had purchased some special supplementation for her, but since she couldn't use it while in the hospital, I tried it myself. My SOB was completely gone as along as I took it. Within a year, I no longer needed it. During that same year, my heavy, irregular periods completely stopped. I stopped taking the supplement. Within a matter of months, all sorts of different, seemingly unrelated issues cropped up. I developed psoriasis. My memory was suddenly getting worse, my bleeding started up again, sometimes hemorrhaging. I became very fatigued, my muscles were becoming sore and it was getting harder and harder to move, I was experiencing weakness, and then, 6 months after I stopped the supplementation, I suffered a neurological event they thought was a stroke in June of 2006. The symptoms were strange, and the diagnosis only came after MRI's were done the next day and some small spots were seen on the scans. They did MRA's of the brain, the carotids from the aorta up. Clear.

Now, as on the day of the "event" I began my supplements again, as one of the supplements I knew to be much more effective than aspirin for to help prevent heart attacks and strokes. Some doctors didn't know what it was and were very upset at me for using it instead of aspirin, but other doctors were familiar with it and were very comfortable with my decision.

The bleeding stopped.

The psoriasis started going away. (it was gone within 2 months)

I was feeling a little better.

It took another month or so to see the neurologist - and she was very quizical about the suggestion of stroke, but finally agreed with it. She ordered a bunch of lab tests. Everything was normal EXCEPT my homocysteine ehivh was elevated. I was told this was very serious and was the only thing they could find that might explain a stroke. I was told this had to be brought under control ASAP, but couldn't really give me any instruction of how to do so other than take B12, folic acid and B6. I needed to find a specialist to help me. And I was on my own.

I started doing research. Was amazed at all I learned about homocysteine. I realized that the reason the supplement had stopped the SOB and the bleeding previously was because it counteracted the effects of the homocysteine, and when I stopped taking the supplement, the dam I had built up burst and homocysteine had started to ravage my body, literally. By the time we took the first blood level of homocysteine, I had already been on vitamin supplementation (the usual tx) for 6 weeks, so we do not know how high it was before June 06. In July it was several points above high normal (which itself is several points too high according to research). During this period of time, I continued to experience more and more neurological symptoms that were confusing. I was deteriorating neurologically but no one understood what was going on.

I found one of the most prominent researches on this subject was near me at a major hospital, so I tried to contact him, only to find he had died a few years earlier. But the researcher I talked to was somewhat familiar with his work, and I asked him for help to find someone. He called me back soon afterwards to tell me the head of cardiology at that hospital wanted to see me asap (the receptionist didn't believe me when I tried to make an appointment!).

Cardiodogist did a lot of testing. Also tested me for a ductus foreman ovale - everything negative except homocysteine still elevated, plus C-Reactive Protein very high (inflammatory marker - homycysteine causes inflammation throughout the body and in the vascular system, accounts for plaque buildup and higher cholesterol) Also told me my levels of homocysteine were serious and dangerous and needed to be brought under control - but couldn't tell me how to structure the levels of the B vitamins and regular supplementation wasn't making much of a dent.

Then I was thrown into very intensive sensory environments once to twice a month - would end up severely debilitated after each one - hardly able to get out of bed, bent over unable to straighten up, lots of neurological issues. visual problems would come weeks at a time then clear. Symptoms began to look more and more like MS and or fibro. But they didn't quite act like either.

Things got progressively worse over the next months while I looked for answers - going to different doctors, most dismissing me because my symptoms were too varied to be taken seriously. I was told I had anxiety, or it was stress. When an MS specialist and head of a major center refused to do anything for me unless I had another MRI (which was impossible as I had developed severe, sudden laryngospasms and was pulled out of the MRI because of it, I started doing more research again last fall - I found that there was an upright MRI so had another scan - everything normal - no spots. Now the doctors don't know what to make of the spots there in Jun of 06. No stroke. Did more research - that is when I discovered I had reason to suspect I might have a B12 deficiency.

Now, keep in mind all the times we tested my B12, it was PERFECTLY normal - around 700.

Also, they checked my B6 which was ABNORMALLY HIGH - in the 50's and 60's. No one could explain this.

In the research I did last fall, I started putting two and two together and though, "I wonder if the active form of my B12, methylcobalamine, is actually low even though my serum B12 is normal, and if so, I wonder if B6 is high because my methylB12 is low and is affecting the ability of my body to convert B6 into P5P."

Now, pretty much the only recent research I was able to find on B6 was in the field of autism - autistic kids tended to have elevated levels of B6, in the same range as mine, but when the active form, P5P was tested for, it was very, very low. Something else I read led me to think that for B6 to convert properly to P5P, methyl B12 was necessary, so I came to my hypothesis above.

I began taking mega doses (6,000 mcg/dy) of methyl B12 - a week later we tested my B12 and homocysteine, and the B12 was off the chart and my homocysteine was in the normal range for the first time.

About 3 weeks later, we tested my homocysteine again along with my B6 - my homocysteine was nearing mid range and my B6 was NORMAL - WAY normal for the first time - just as I suspected would happen!

Now, many things improved, but gradually, my mobility, on this dosage of B12, very slowly worsened, until this last summer, I was using a cane much of the time, and even had to use electric chairs to do such things as shopping at time - it got so bad I could not walk the mall with my children, but had to use the electric chairs all the time in such situations.

During this time, even though this was happening, I was feeling better in other ways, so I tried decreasing the amount of B12 to dosing once every couple of days.

From the event in 2006 to this point, I had no bleeding whatsoever, no periods, nothing. After about a week of decreasing the B12, I began to have light bleeding. The timing of this corresponding to all the testing my neurologist was doing, so we did another homocysteine - it had increased to the boarder of high normal. I upped my B12 again to 6,000 mcg/dy and within a week or so, all bleeding stopped again. Again, though I did not have my homocysteine rechecked, from what I had already learned, it was obvious my homocysteine was back down.

Now, it all starts to get interesting.

A little over a month ago, we went on vacation in SC. We were ending our vacation as Hannah hit North Myrtle Beach where we were staying. That week, my DH became very worried about me as he saw me deteriorating physically - I simply couldn't do all the things the family wanted to do - I simply rested in our beautiful condo we rented just thankful to be able to rest like that. The day Hannah came in, he asked me where I was going to be a year from now - I couldn't tell him.

As I thought about it, wondering what I could do, suddenly the thought came into my mind "Double the B12". This was going beyond what I had previously read was used. Again "Double the B12".

So I did. I doubled the next two doses.

The next day, I put away my cane and have not used it since. It has been month, and I now take a dose between 12,000 and 24,000 mcg/day - My kids ask me if I am on speed. I walk faster than they do. They have to hustle to keep up with me, at least for the short haul.

As I push myself, I find I do hit my limit - then I simply need more B12 - I do not get debilitated - my memory and word finding issues have greatly improved. I still have pain, but my muscles don't stiffen up on me if I have enough B12 - I call it turning into stone, the cramping goes away, my ability to feel in my hands and feet improves - my urinary issues improve (I was experiencing incontinence) - I can't list all the things that have changed.

If I miss doses, then symptoms start coming back pretty fast.

I am looking at eventually taking 40,000 - 60,000 mcg/dy to try to overcome the peripheral neuropathy I have been experiencing (much like diabetic neuropathy which some studies show that this level of B12 can reverse).

The difference has been night and day - the change literally happened overnight.

I feel like I have my life back. But I know that without this supplementation, I would eventually become bed ridden and die.

My B12 issue looks like it is one of conversion - I absorb it fine. I seemingly can't convert it in my liver to methylcobalamin, so have to take this form, which is absolutely essential for life in so many, many ways.



One more thing - when I doubled the B12 to 12,000 mcg/dy, within a week or so, I started having spotting again - I was very confused by this. It took me a while to figure it out - I could not figure out why a condition that was so clearly linked to homocysteine being elevated was occurrring again when logically it would seem the homocysteine should not be higher on this higher dose of B12 then it was on a lower dose (6,000 mcg).

Then it dawned on me:

My B6 P5P seems obviously linked to my methylcobalamin level - when the methyl B12 was obviously too low, my B6 wasn't converting properly and so I was deficient on the active form of B6 too.

Correcting the methyl B12 corrected the B6 issue.

But what would happen to the B6 if I doulbed the methyl B12?

Would the P5P (active form of B6) easily become depleted?


If so, would this cause homocysteine levels to rise? There are two ways homocysteine is metabolized in the body - one uses methyl B12 and methyl folate to metabolize homocysteine back into methionine, the other way uses B6 (P5P) to metabolize homocysteine to break it down into its by products. Is it that this metabolic pathway isn't functioning properly?

If I took P5P, would this correct this situation?
To test this I started taking a bio active form of B vitamins, especially for the B6.

Within a week the bleeding stopped and stays stopped as long as I take this with these very high doses of methyl B12.


From my own experience, I have to suspect that many of , those with neurological symptoms are probably not taking enough B12 to overcome them, and that very high mega doses are actually needed.
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Old 10-12-2008, 07:50 PM
Naominjw Naominjw is offline
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My daughter has a vitamin B metabolic problem. It maybe is not as rare as doctors believe. And in some forms, the blood level is elevated because the body cannot convert it (methylate) to usable forms. Methylated folate is useful (folate and the brain) as is methylated B12 (methylcobalamin). I think it is ironic that now a pharmaceutical company sells the methylfolate (Deplin) as a prescription to help "depression". Metanx is the prescription vitamin B12/B9/B6 that sounds like it has what you take. I guess you would call that a "megadose".

I have a question for you, one we still have not figured out in all the problems my daughter has -- sometimes she still wakes up feeling like her body aches and all her joints hurts. It is intermittent. Not sure-- maybe it is low hormones (which she also has)Did you have that before your vitamin B problems were fixed?

-"Naomi"
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Old 10-12-2008, 08:18 PM
glenntaj glenntaj is offline
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Default There are definitely four people--

--whose material you should delve into: three of whom have posted, or still post, on this site, and one other.

The three who have or still post in and around here are:

Rose, who went through severe B12 deficiency and has come out the other side:

http://roseannster.googlepages.com/home

JCC (Cara), who has put together The Gluten File, the world's leading database on gluten sensitivity/celiac issues, including the malabsoprtion of B12:

http://jccglutenfree.googlepages.com/home

Mrs. D and her posts on vitamin absoprtion/interaction, whose posts are all over this board (here's an example):

http://brain.hastypastry.net/forums/...ad.php?t=35730

And--Paul Golding has put together an impressive database and personal story of B12 deficiency and related conditions:

http://www.paulgolding.id.au/
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  #4  
Old 10-13-2008, 12:51 AM
theresej theresej is offline
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Quote:
Originally Posted by Naominjw View Post
My daughter has a vitamin B metabolic problem. It maybe is not as rare as doctors believe. And in some forms, the blood level is elevated because the body cannot convert it (methylate) to usable forms. Methylated folate is useful (folate and the brain) as is methylated B12 (methylcobalamin). I think it is ironic that now a pharmaceutical company sells the methylfolate (Deplin) as a prescription to help "depression". Metanx is the prescription vitamin B12/B9/B6 that sounds like it has what you take. I guess you would call that a "megadose".

I have a question for you, one we still have not figured out in all the problems my daughter has -- sometimes she still wakes up feeling like her body aches and all her joints hurts. It is intermittent. Not sure-- maybe it is low hormones (which she also has)Did you have that before your vitamin B problems were fixed?

-"Naomi"
Hi Naomi - my B12 problem is not fixed, I don't know it will ever be fixed unless I can find a doctor who will figure out why I have this problem (it is obviously metabolic in nature) and can do something about it. I have to live with it and the only way to do so with any sense of normalcy is to take huge doses of methyl B12. My greatest concern about this is being unable to get this form of B12 easily and being forced to go without.

I have had constant pain in my muscles and joints, worse at times than others in varying in locations. I became so used to the pain I would mostly ignore it until it got so bad I couldn't. It would be mostly because of the pain I would be incapacitated after these highly intensive sensory events that would put me in bed for days afterwards. I still have pain in various places in my body, but it is so much less than it was I don't really notice it much unless I am thinking about it or I over do it and it gets worse.

The muscle and joint pain was something that preceded the symptoms I mentioned above by decades, at first coming and going intermittently then with increasing frequency until tb became constant with varying intensity.

Other early symptoms were increasing sensitivity to bright lights and sounds, and sunlight. I found I wanted to avoid direct sunlight as much as possible - this started in my teenage years and got worse through my 20's and 30's till I avoided direct sunlight almost all the time. trying to be in the shade as much as possible when outside.and feeling absolutely miserable when I had to be in direct sunlight.

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Old 10-13-2008, 10:31 AM
Naominjw Naominjw is offline
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Quote:
Originally Posted by theresej View Post


Hi Naomi - my B12 problem is not fixed, I don't know it will ever be fixed unless I can find a doctor who will figure out why I have this problem (it is obviously metabolic in nature) and can do something about it. I have to live with it and the only way to do so with any sense of normalcy is to take huge doses of methyl B12. My greatest concern about this is being unable to get this form of B12 easily and being forced to go without.

My wording was poor. By "fixed", I meant "treated". There is a lot we can't really "fix", and you are absolutely right -- something that is "fixed" would mean you no longer have to do something to treat it. My daughter does have the MTHFR genetic variation, but she has a lot more going on as well.

My daughter has a prescription for Metanx. Private insurance and even Medicare/Medicaid pays for Deplin & Metanx. But again--you are right, the thought of losing the medications required--whether they are in the form of OTC, food supplements or prescriptions--is terrifying. My daughter takes one hormone that alone would require a full-time job for her to purchase just that one.

Quote:


I have had constant pain in my muscles and joints, worse at times than others in varying in locations. I became so used to the pain I would mostly ignore it until it got so bad I couldn't. It would be mostly because of the pain I would be incapacitated after these highly intensive sensory events that would put me in bed for days afterwards. I still have pain in various places in my body, but it is so much less than it was I don't really notice it much unless I am thinking about it or I over do it and it gets worse.

The muscle and joint pain was something that preceded the symptoms I mentioned above by decades, at first coming and going intermittently then with increasing frequency until tb became constant with varying intensity.


Gee. Same with her. By the time a doctor finally took us seriously, she was 16.5 and she had osteoporosis. I think she had a confluence of small genetic problems which, when taken all together, was major. She had intestinal malabsorption, but with genes decreasing calcium absorption, she had severe malabsorption of the calcium.

She is now on a diet free of gluten, dairy, soy and eggs. She eats very well--mostly whole foods diet. She is on lots of calcium and vitamin D, methylated B vitamins, amino acids, and more.

Quote:

Other early symptoms were increasing sensitivity to bright lights and sounds, and sunlight. I found I wanted to avoid direct sunlight as much as possible - this started in my teenage years and got worse through my 20's and 30's till I avoided direct sunlight almost all the time. trying to be in the shade as much as possible when outside.and feeling absolutely miserable when I had to be in direct sunlight.
Sounds inflammatory? My daughter had migraines, but even apart from that she was overly sensitive to heat and cold... but not sunshine per se. I have two other friends sensitive to sunshine. Both of them, the doctors say, have inflammatory/autoimmune responses, and the key they are told is to keep down inflammation. To that end they need omega-3 fatty acids, and other anti-oxidants. One used to be on prescription meds for it, but now just takes supplements and to my eyes seems better.

-"Naomi"
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  #6  
Old 10-14-2008, 09:54 AM
mrsdoubtfyre mrsdoubtfyre is offline
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Lightbulb DNA testing

There are now DNA tests you can get without a prescription that
evaluate your ability to use vitamins.

You can read about it here:
http://brain.hastypastry.net/forums/...ghlight=Solgar

Also I don't see any mention of methylfolate in this post. There are over 25 genetic errors in methylation of folate, called polymorphisms.

I would check that out. The DNA test would reveal that.
Quote:
Firms Roll Out Retail Nutrigenomics

Consumer genomics firm GeneLink (Jersey City, N.J.) announced an exclusive, multi-year retail licensing and distribution agreement with Solgar Vitamin and Herb (Leona, N.J.) to market a nutrigenomic line of nutritional supplements. Under the agreement, Solgar will market a brand of nutritional supplements called Nutrigenomx that are tailored to individual consumers’ genes based on the results of a GeneLink DNA collection kit and Genetic Compass reporting system. The collection kits and supplements will be available at health food and specialty natural food retailers in North America.

“By combining Solgar’s leadership in nutritional sciences with GeneLink’s ten-plus years of research and advancements in consumer genomics and SNP testing, we have created an ideal marketing relationship for each of our companies,” said GeneLink CEO Monte Taylor. “A personalized approach to wellness has become an important trend in healthcare.”
http://www.aacc.org/publications/cln...stry_0208.aspx

You will have to call Solgar from their website to find a store that is trained in giving this test, and interpreting the results.

Metafolin will be out shortly --it has just been released at Solgar.

This is part of a post from an employee from Solgar who contacted me at another forum~~
Quote:
Just as an update on Metafolin from Solgar. It will be in fact introduced to the trade (retailers) officially this weekend at a tradeshow in Boston.
The reason for the delay was the new GMP laws kept the product in retain in our laboratory for 90 days (for potency guarantee).This is now standard procedure for new products. Product ready to ship to retailers are listed below:

Metafolin:
400mcg 50 tablets $7.70
400mcg 100 tablets $12.20

800mcg 50 tablets $9.40
800mcg 100 tablets $15.50

Hopefully it will be on the shelves in health food stores soon as well as websites such as Willner Chemist, Vitamin Shoppe and iherb among others. I know many of you have anxiously been waiting for this product.
Anyone with unusual responses to methylB12 may have other issues, including faulty folate metabolism.
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Old 10-14-2008, 07:52 PM
theresej theresej is offline
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Quote:
Originally Posted by Naominjw View Post
My wording was poor. By "fixed", I meant "treated". There is a lot we can't really "fix", and you are absolutely right -- something that is "fixed" would mean you no longer have to do something to treat it. My daughter does have the MTHFR genetic variation, but she has a lot more going on as well.
I undersetand - I was simply trying to clarify. "_

I was tested for the MTHFR mutation, but it came back negative. The problem does not seem to be one of utiliztion, as is seen with this mutation - it makes it hard to use methyl B12 as an enzymatic co-factor.

It seems that the problem is in production of methyl B12.

Quote:
My daughter has a prescription for Metanx. Private insurance and even Medicare/Medicaid pays for Deplin & Metanx. But again--you are right, the thought of losing the medications required--whether they are in the form of OTC, food supplements or prescriptions--is terrifying. My daughter takes one hormone that alone would require a full-time job for her to purchase just that one.
That
s got to be tough - is it possible to have a few months at home at a time in case there are temporary disrruptions?

Quote:
Gee. Same with her. By the time a doctor finally took us seriously, she was 16.5 and she had osteoporosis. I think she had a confluence of small genetic problems which, when taken all together, was major. She had intestinal malabsorption, but with genes decreasing calcium absorption, she had severe malabsorption of the calcium.

She is now on a diet free of gluten, dairy, soy and eggs. She eats very well--mostly whole foods diet. She is on lots of calcium and vitamin D, methylated B vitamins, amino acids, and more.


Sounds inflammatory? My daughter had migraines, but even apart from that she was overly sensitive to heat and cold... but not sunshine per se. I have two other friends sensitive to sunshine. Both of them, the doctors say, have inflammatory/autoimmune responses, and the key they are told is to keep down inflammation. To that end they need omega-3 fatty acids, and other anti-oxidants. One used to be on prescription meds for it, but now just takes supplements and to my eyes seems better.

-"Naomi"
Supplementation, imho, is always better if it can achieve what meds are designed for in my opinion. I developed an uncommon form of hyerptension - postural hypertension (not hypotension) where the BP is normal when laying down, but goes up when sitting or even more when standing. They wanted to put me on anti-hypertensives - I looked up an alternative, found hawthorn, took it, and in 2 weeks my BP was normal. I take it as necessary.

Have your friends had their homocysteine checked? It is highly inflammatory even in the high normal range. - it really needs to be mid range at the most.


Also, has your daughter been tested for psuedotumor cerebri? Her migraines at her age suggest the possibility, and it is something I was diagnosed with last December - it most probably has been a chronic condition that has been present for a long time.


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Old 10-14-2008, 08:07 PM
theresej theresej is offline
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Quote:
Originally Posted by mrsdoubtfyre View Post
There are now DNA tests you can get without a prescription that
evaluate your ability to use vitamins.
Right now, the belief is it is not a problem with utilizing methylB12, but that my body is not converting cyanocobalamin to methylcobalamin to be utilized. That is a different issue from utilization where genetic mutations impar the body's ability to use B vitamins as enzymatic co-factors. It is, right now, an unknown and assumed very rare condition.

Quote:
You can read about it here:
http://brain.hastypastry.net/forums/...ghlight=Solgar

Also I don't see any mention of methylfolate in this post. There are over 25 genetic errors in methylation of folate, called polymorphisms.
My folic acid wasn't tested as there were no anemia issues going on. But a deficiency in methyl B12 will trap methyl folate.

Also, my B6, as i mentioned originally, was mysteriously elevated, as is found in m any autistic children, and no one could make sense of it, making it hard to determine how much, if any, B6 I should take to help control my homocysteine. There were studies I had read that, after I put 2 and 2 together, led me to believe that the B6 was elevated because it was not converting properly to P5P an this because I was deficient in methyl B12.

Taking the methyl B12 caused my B6 to snap back to normal. I can find no research on this relationship.

Quote:
I would check that out. The DNA test would reveal that.


http://www.aacc.org/publications/cln...stry_0208.aspx

You will have to call Solgar from their website to find a store that is trained in giving this test, and interpreting the results.

Metafolin will be out shortly --it has just been released at Solgar.

This is part of a post from an employee from Solgar who contacted me at another forum~~


Anyone with unusual responses to methylB12 may have other issues, including faulty folate metabolism.
Or faulty folate metabolism can be the result of the lack of methyl B12 trapping the methyl folate.

I have considered doing such dna testing beyond what has already been done. I have to look into the cost.

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Old 10-14-2008, 09:50 PM
Naominjw Naominjw is offline
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Quote:
Originally Posted by theresej View Post

Have your friends had their homocysteine checked? It is highly inflammatory even in the high normal range. - it really needs to be mid range at the most.
No. But I have mentioned that it is as least as important than--if not more important than--measuring cholesterol. One said she would need to get a new doctor, because she can't get hers to run even the usual tests.

Quote:

Also, has your daughter been tested for psuedotumor cerebri? Her migraines at her age suggest the possibility, and it is something I was diagnosed with last December - it most probably has been a chronic condition that has been present for a long time.
I had to look that one up, as I had never heard of it before. No, she was never tested for cause of the migraines--just medicated for them. The medication only partially controlled them. They started in infancy, and were diagnosed at age 2. Luckily, research came out recently about pediatric migraineurs and CoQ10, and she was put on that. At the same time, she added extended-release melatonin & Nutrasleep at night. She has not had a migraine since, and could finally slowly start tapering off the medication.

She is enjoying her new-found life.
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Old 10-15-2008, 12:55 AM
joy joy is offline
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I want to be thankful that I saw this tonight. I have peripheral neuropathy that is progressing throughout my whole body now. I am not taking nearly enough B12 now and will soon need someone to help me with my medication alone if it keeps progressing like it has in the last few months.

I especially am happy to see glenntaj & mrsdoubtfyre posting here as well as others personal stories.

I see my work is not yet done & hopefully I can attack my own neuropathy a bit better. Thanks everyone. I have a lot more reading to do. (and pill taking)

My neurological symptoms are in my head, eyes, ears etc even now. Whew not much left but the brain I'm afraid. I do not mean for my post to derail this one.
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