I recently discovered I have a Vitamin D deficiency. As I had been supplementing for 5 months previous to having the blood test, I can only assume I must have been dangerously deficient previous to this. I've since discovered Vit D is actually a hormone, not a vitamin, and it has a strong correlation with Hashimotos Disease, i.e. underactive thyroid, which I also have. As I have long felt my TN is part of a bigger autoimmune picture, I wondered if there might be any connection between Vitamin D and TN or other neurological conditions. I've heard it is associated with MS, for example, another demyelinating disease.
Anyone heard of any associations, or seen any discussions or research, on Vitamin D and neurological conditions? Any leads most gratefully accepted...
I have been low D for a while. TN2, suspected fibro, nerve pain in my arms and legs. This is a good thread topic.
I found out that I was hugely deficient in Vitamin D a few years back so have religiously supplemented every day since with a high dose pill. I dare say that doesn't correlate for me then. Although if I was low when I first got it..............hmmmm.
I typically encounter issues on Vitamin D primarily in the context of reactions to Meds. In the 20 years I've been reading medical literature, I haven't seen any reliable connections between Vitamin D deficiency and the development of TN. There are people who claim a connection for either or both Vitamin D and Vitamin B-12 as therapies, but the trials data just isn't there, that I can see. B-12 fell out of favor and research funding about the time that Tegretol was found to be effective against TN-1 pain (1970s).
Regards, Red
To further follow up, most of us in the US are dangerously low on Vitamin D levels. Most are not tested for it. But thise of us struggling against neurological conditions start getring bood panels. My count came back at a 5. A healthy count is a 60.
The reality is the lifestyles we lead (inside), our locals (I live in the Pacific NW where sun is in shortage 9 months of the year), and our education and use of sunscreen means we do not get the vitamin.
Add to it our drugs can deplete it more.
I would say deficiency is normal. And regulating it would likely help is feel better for other reasons but have no scientific proof for TN.
Lisa, I'd be interested in reading the best links you know which demonstrate evidence for "most of us in the US" being dangerously low on Vitamin D levels. We had a dust-up last night with a member who claimed that mega-doses of Vitamin D are effective in managing TN pain down to zero, before advocating that people contact an Indian physician who claims to be able to reliably drive TN into remission. The guy has a reputation as a quack, and I'm concerned that we don't overreact to such claims.
Regards and best
Hi Shadow! Yeah, it's an incredibly common deficiency in thyroid sufferers and tends to run alongside a Vit B12 deficiency. I had/have some kind of B12 problem, but unfortunately have never been able to identify it; all I know is B12 injections stopped my TN pain. I feel these things are all connected, but I can't pin anything down.
shadow2 said:
I have been low D for a while. TN2, suspected fibro, nerve pain in my arms and legs. This is a good thread topic.
Hi Catwoman. Have you never measured your Vit D since you started supplementing? I'd be really curious to know what your figure was like nowadays. There can be issues like malabsorption going on that you might not be aware of so it might be interesting and informative for you to see how things stand now.
catwoman said:
I found out that I was hugely deficient in Vitamin D a few years back so have religiously supplemented every day since with a high dose pill. I dare say that doesn't correlate for me then. Although if I was low when I first got it..............hmmmm.
Hi Red. Yeah, I know all the B12 studies on TN. That's how I discovered that it was a legitimate treatment in the fifties, There has been some sporadic trials of it in more recent times (I had an Australian one from the 2000s, tested on capuchins) but I have long suspected the 50s research was dropped when anti-convulsants were shown to work on TN, which is a great shame in my opinion. If it wasn't for B12 injections I'd still be doped to the eyeballs on Carbamazepine & Gabapentin, but still in pain. Two months after starting B12 injections I was able to drop all my Gabapentin and I am now lowering my Carbamazepine. More importantly, the B12 stopped the pain when 10 months of drugs wasn't able to do it.
Unfortunately, my doctor didn't do Homocysteine & MMA tests before we started injecting me so we never established if B12 was a real problem or it is just some kind of pain control it is offering. Also, this lack of proper testing beforehand has left it wide open for my doctor to dismiss it as placebo and/or coincidence. I know this isn't true simply because of how it worked and also because no placebo could possibly last this long against TN pain but he is not to be convinced.
When I discovered some time later that I was hypothyroid and that they often have B12 issues, I felt surer than ever there was a role being played by B12 for me. When I then also discovered my Vit D problem, I feel more convinced than ever that it is a part of the same puzzle. I just don't know how yet. Too many variables, as usual!
Richard A. "Red" Lawhern said:
I typically encounter issues on Vitamin D primarily in the context of reactions to Meds. In the 20 years I've been reading medical literature, I haven't seen any reliable connections between Vitamin D deficiency and the development of TN. There are people who claim a connection for either or both Vitamin D and Vitamin B-12 as therapies, but the trials data just isn't there, that I can see. B-12 fell out of favor and research funding about the time that Tegretol was found to be effective against TN-1 pain (1970s).
Regards, Red
Hi Lisa! Yeah, there does seem to be a consensus among a lot of doctors interested in the subject that there is something of a pandemic of Vitamin D shortage in the Western world, for exactly the reasons you state. With the hypothyroid problem there seems to be some uncertainty as to whether the Vit D deficiency causes the thyroid problem or the thyroid problem is causing the deficiency. It's a tricky one, because thyroid problems cause low stomach acid, which causes malabsorption, so you could see how that might help a deficiency be created. On the other hand, Vit D appears to be used in almost every cell in the body. Given that, the idea of its absence being an endocrine disruptor doesn't seem too unlikely. As thyroid problems also cause neurological damage, it's not a stretch to extend that to TN. Rarer perhaps, but still feasible.
The problem here is the old chicken and egg one. Is it Vit D - thyroid - to cellular damage - TN? Or is it thyroid (or some other endocrine problem perhaps) - Vit D deficiency - cellular damage - TN?
Unfortunately there are so many permutations you can be matching them up all day! But it definitely is a growing modern problem, as are endocrine problems like low thyroid.
Lisa (iamrite) said:
To further follow up, most of us in the US are dangerously low on Vitamin D levels. Most are not tested for it. But thise of us struggling against neurological conditions start getring bood panels. My count came back at a 5. A healthy count is a 60.
The reality is the lifestyles we lead (inside), our locals (I live in the Pacific NW where sun is in shortage 9 months of the year), and our education and use of sunscreen means we do not get the vitamin.
Add to it our drugs can deplete it more.
I would say deficiency is normal. And regulating it would likely help is feel better for other reasons but have no scientific proof for TN.
Hi Teeth! My levels are pretty well dead normal now. I discovered how massively low I was about 4 years ago when I was also severely amaemic but I've taken 1000 mg or whatever they are daily since then. We have no shortage of sunshine down here in Oz but I think we're all paranoid about melanomas!!!!!
Hi all,
In the past couple of years, I've read many articles and books about the importance of vitamin D (really a hormone) and the critically low levels currently found in many people across the world. I've also read that for some, low vitamin D levels are caused by a problem with absorption. I will have to go back to PubMed and check for randomized controlled studies.
Recently read and recommend the book, Brain Maker. There are many studies cited for each chapter of this book and the author makes a case for the connection between the gut (biome) and the brain. This is a book that is NOT selling supplements, but rather recommending healthy eating, including pre and probiotics.
The author does recommend these supplements: DHA 1,000mg, Turmeric 500 mg two times a day, Coconut oil 1 tsp, Alpha-lipoic acid 300 mg, and Vitamin D – 2,000-5,000 per day.
Additionally, he recommends specific probiotics, which can be found both in supplements and in food:
Lactobacillus plantarum (kimchee, sauerkraut)
Lactobacillus acidophilus (yogurt)
Lactobacillus brevis (pickles)
Bifidobacterium lacfic (yogurt)
Bifidobacterium longum.
Wishing all of you healthy and pain free days.
Rissmal
One small caution, folks: Here at Living With TN we do not prescribe or allow members to prescribe medications for others. Too many legal liability issues. For your own safety, before you attempt major changes to your diet, you should see both a dietician and your neurologist to check for interactions with any other medications you have been prescribed.
And you need to be VERY aware that even within the US, the contents and manufacturing quality control of most dietary supplements is not effectively controlled or regulated. The Attorney General of New York State recently sued several major chain grocery stores for failing to provide the ingredients claimed in several of their brand name dietary supplements. So it's a "buyer beware" situation.
Regards, Red
Hi Catwoman. Well that's good. But isn't it unbelievable you had low amounts, in Australia of all places! I could see me getting into trouble when I lived in Orkney some years ago, but Australia? And I know what you mean about the terror of melanomas - doesn't Oz have the world's highest skin cancer rate? That can't be reassuring for a frolic in the beams!
catwoman said:
Hi Teeth! My levels are pretty well dead normal now. I discovered how massively low I was about 4 years ago when I was also severely amaemic but I've taken 1000 mg or whatever they are daily since then. We have no shortage of sunshine down here in Oz but I think we're all paranoid about melanomas!!!!!
Hi Rissmal, many thanks for the book recommendation - that sounds like my kind of material. Very interested in that area of research; I've been reading a lot about the gut microbiome.
I'm not big on supplements, I must admit. I took them right through my 20s right up to my 40s and they did nothing for me, except B6, which gave me nerve damage in my fingers from overdosing! That said, having now found myself short of B12 and Vit D, perhaps I need to rethink! I think I was just taking them way too young, before there was any real need.
rissmal said:
Hi all,
In the past couple of years, I've read many articles and books about the importance of vitamin D (really a hormone) and the critically low levels currently found in many people across the world. I've also read that for some, low vitamin D levels are caused by a problem with absorption. I will have to go back to PubMed and check for randomized controlled studies.
Recently read and recommend the book, Brain Maker. There are many studies cited for each chapter of this book and the author makes a case for the connection between the gut (biome) and the brain. This is a book that is NOT selling supplements, but rather recommending healthy eating, including pre and probiotics.
The author does recommend these supplements: DHA 1,000mg, Turmeric 500 mg two times a day, Coconut oil 1 tsp, Alpha-lipoic acid 300 mg, and Vitamin D – 2,000-5,000 per day.
Additionally, he recommends specific probiotics, which can be found both in supplements and in food:
Lactobacillus plantarum (kimchee, sauerkraut)
Lactobacillus acidophilus (yogurt)
Lactobacillus brevis (pickles)
Bifidobacterium lacfic (yogurt)
Bifidobacterium longum.
Wishing all of you healthy and pain free days.
Rissmal
I agree totally, Woman with the electric teeth,
I am opposed to supplements, for some of the same concerns that Red mentioned. Since they are not regulated in any way, there is no guarantee they are what the label says. Also, I prefer to get my nutrients from real food.
However, the information in the Brain Maker book is rather compelling and I am now dealing with TN/ATF, a neurological disease/disorder or some kind of 'dis', so I thought I'd share the resource with my fellow TN sufferers.
Woman with the electric teeth said:
Hi Rissmal, many thanks for the book recommendation - that sounds like my kind of material. Very interested in that area of research; I've been reading a lot about the gut microbiome.
I'm not big on supplements, I must admit. I took them right through my 20s right up to my 40s and they did nothing for me, except B6, which gave me nerve damage in my fingers from overdosing! That said, having now found myself short of B12 and Vit D, perhaps I need to rethink! I think I was just taking them way too young, before there was any real need.
rissmal said:
Hi all,
In the past couple of years, I've read many articles and books about the importance of vitamin D (really a hormone) and the critically low levels currently found in many people across the world. I've also read that for some, low vitamin D levels are caused by a problem with absorption. I will have to go back to PubMed and check for randomized controlled studies.
Recently read and recommend the book, Brain Maker. There are many studies cited for each chapter of this book and the author makes a case for the connection between the gut (biome) and the brain. This is a book that is NOT selling supplements, but rather recommending healthy eating, including pre and probiotics.
The author does recommend these supplements: DHA 1,000mg, Turmeric 500 mg two times a day, Coconut oil 1 tsp, Alpha-lipoic acid 300 mg, and Vitamin D – 2,000-5,000 per day.
Additionally, he recommends specific probiotics, which can be found both in supplements and in food:
Lactobacillus plantarum (kimchee, sauerkraut)
Lactobacillus acidophilus (yogurt)
Lactobacillus brevis (pickles)
Bifidobacterium lacfic (yogurt)
Bifidobacterium longum.
Wishing all of you healthy and pain free days.
Rissmal
These are good cautions, Red. You are very wise.
I brought the list of suggested supplements/probiotics to my last GP visit. My doctor not only OKed them for me to use along with my personal drug protocol, but said she recommends them to all her patients. She also provides access in her office to high quality supplements.
Ironically, at the end of my visit, she made the recommendation to me to read Brain Maker (which I had just finished reading - lol).
Richard A. "Red" Lawhern said:
One small caution, folks: Here at Living With TN we do not prescribe or allow members to prescribe medications for others. Too many legal liability issues. For your own safety, before you attempt major changes to your diet, you should see both a dietician and your neurologist to check for interactions with any other medications you have been prescribed.
And you need to be VERY aware that even within the US, the contents and manufacturing quality control of most dietary supplements is not effectively controlled or regulated. The Attorney General of New York State recently sued several major chain grocery stores for failing to provide the ingredients claimed in several of their brand name dietary supplements. So it's a "buyer beware" situation.
Regards, Red
I know what you mean, Rissmal - it's very difficult to find anything that even mentions TN so we are reduced to reading or researching anything with even a flimsy neurological connection. I search high and low, literally, trying to find answers to why I have the problem. It's not helped by my doc regularly reminding me I'll "never know why" and "never get a cure". I sometimes think it's because of doctors that it's really nicknamed the suicide disease!
rissmal said:
I agree totally, Woman with the electric teeth,
I am opposed to supplements, for some of the same concerns that Red mentioned. Since they are not regulated in any way, there is no guarantee they are what the label says. Also, I prefer to get my nutrients from real food.
However, the information in the Brain Maker book is rather compelling and I am now dealing with TN/ATF, a neurological disease/disorder or some kind of 'dis', so I thought I'd share the resource with my fellow TN sufferers.
Woman with the electric teeth said:
Hi Rissmal, many thanks for the book recommendation - that sounds like my kind of material. Very interested in that area of research; I've been reading a lot about the gut microbiome.
I'm not big on supplements, I must admit. I took them right through my 20s right up to my 40s and they did nothing for me, except B6, which gave me nerve damage in my fingers from overdosing! That said, having now found myself short of B12 and Vit D, perhaps I need to rethink! I think I was just taking them way too young, before there was any real need.
rissmal said:
Hi all,
In the past couple of years, I've read many articles and books about the importance of vitamin D (really a hormone) and the critically low levels currently found in many people across the world. I've also read that for some, low vitamin D levels are caused by a problem with absorption. I will have to go back to PubMed and check for randomized controlled studies.
Recently read and recommend the book, Brain Maker. There are many studies cited for each chapter of this book and the author makes a case for the connection between the gut (biome) and the brain. This is a book that is NOT selling supplements, but rather recommending healthy eating, including pre and probiotics.
The author does recommend these supplements: DHA 1,000mg, Turmeric 500 mg two times a day, Coconut oil 1 tsp, Alpha-lipoic acid 300 mg, and Vitamin D – 2,000-5,000 per day.
Additionally, he recommends specific probiotics, which can be found both in supplements and in food:
Lactobacillus plantarum (kimchee, sauerkraut)
Lactobacillus acidophilus (yogurt)
Lactobacillus brevis (pickles)
Bifidobacterium lacfic (yogurt)
Bifidobacterium longum.
Wishing all of you healthy and pain free days.
Rissmal
Just ordered the book from the library - thanks again for the rec'!
rissmal said:
I agree totally, Woman with the electric teeth,
I am opposed to supplements, for some of the same concerns that Red mentioned. Since they are not regulated in any way, there is no guarantee they are what the label says. Also, I prefer to get my nutrients from real food.
However, the information in the Brain Maker book is rather compelling and I am now dealing with TN/ATF, a neurological disease/disorder or some kind of 'dis', so I thought I'd share the resource with my fellow TN sufferers.
Woman with the electric teeth said:
Hi Rissmal, many thanks for the book recommendation - that sounds like my kind of material. Very interested in that area of research; I've been reading a lot about the gut microbiome.
I'm not big on supplements, I must admit. I took them right through my 20s right up to my 40s and they did nothing for me, except B6, which gave me nerve damage in my fingers from overdosing! That said, having now found myself short of B12 and Vit D, perhaps I need to rethink! I think I was just taking them way too young, before there was any real need.
rissmal said:
Hi all,
In the past couple of years, I've read many articles and books about the importance of vitamin D (really a hormone) and the critically low levels currently found in many people across the world. I've also read that for some, low vitamin D levels are caused by a problem with absorption. I will have to go back to PubMed and check for randomized controlled studies.
Recently read and recommend the book, Brain Maker. There are many studies cited for each chapter of this book and the author makes a case for the connection between the gut (biome) and the brain. This is a book that is NOT selling supplements, but rather recommending healthy eating, including pre and probiotics.
The author does recommend these supplements: DHA 1,000mg, Turmeric 500 mg two times a day, Coconut oil 1 tsp, Alpha-lipoic acid 300 mg, and Vitamin D – 2,000-5,000 per day.
Additionally, he recommends specific probiotics, which can be found both in supplements and in food:
Lactobacillus plantarum (kimchee, sauerkraut)
Lactobacillus acidophilus (yogurt)
Lactobacillus brevis (pickles)
Bifidobacterium lacfic (yogurt)
Bifidobacterium longum.
Wishing all of you healthy and pain free days.
Rissmal