Hi, I have successfully treated my TN with vitamin B12. It was a long difficult journey, but after two months of B12 injections, and many fights with my doctor, my pain, which I'd had for ten months, suddenly went into remission. Of course, this may not be permanent or a cure of any sort, but what it does suggest is that B12 deficiency played a role in the condition - either from malabsorption or from some other condition that was stopping the B12 being used.
As I have a history of gastrointestinal problems, including gallbladder disease and oesophagitis, I am looking into conditions such as coeliac disease and thyroid problems, diseases that may affect B12 levels, to see if they may throw up some information of interest. I am being tested for both and have discovered I have low IgA levels, a common problem among coeliac sufferers. Of one thing I am sure, however - all the illnesses I have had are connected and they have somehow ended up at Trigeminal Neuralgia.
What I wanted to ask was does anyone else have an autoimmune condition? Have you had a diagnosed B12 deficiency, or a condition causing B12 deficiency?
I would welcome any interesting insights into this. Doctors and consultants are not interested in deeper diagnosis of my condition. I have been written off, as we all are with TN, as an incurable, degenerative dead end. Medication or die. But my success with B12 has made me more determined than ever to get to the bottom of why this has happened. Trigeminal Neuralgia is NOT a dead end. Something has caused the demyelination in our brains and there IS a reason for it.
I am not looking for dental reasons causing damage to the nerve itself, since they are purely physical problems with an obvious destructive cause, but other than that please, let me hear from you. No theory too crazy!
Funny, I just received my first B12 injection today. It was recommended by two of my cousins that are doctors in Cuba. Thought I try it - nothing to lose. I hope I have your success for my TN II pain.
I spoke to a friend of mine who has MS and she mentioned her B12 levels were very low. She's now on quarterly injections and has seen a reduction in symptoms. I had mine checked recently and they were on the low side, so have added this to my supplements. Can't say I've had any significant change so far, but will be interesting to see in the longer term if it reduces episodes..
Hi Maria, me too - I wish you the best with it. I had loading doses, i.e. an injection every other day for three weeks then a maintenance shot once a month. My doctor was NOT in favour, and still isn't - apparently seeing the living proof in front of him isn't enough - but there you go. It works, at least for me. Best of luck with it.
Maria said:
Funny, I just received my first B12 injection today. It was recommended by two of my cousins that are doctors in Cuba. Thought I try it - nothing to lose. I hope I have your success for my TN II pain.
Hi Smiley. Yeah, MS is a demyelinating disease too, so B12 could play a part. Some B12 experts say there are people walking around with a MS diagnosis who actually have B12 deficiency. Terrible. But doctors are very reluctant to treat B12 deficiency unless you fit the test criteria, which is too low and needs to be revised. Supplementation may not do you any good. If it is a malabsorption problem then the supplements will not be being used by your body. Injections are by far the safest, surest route. That is the recommended treatment in the West for diagnosed B12 deficiency.
Smiley said:
I spoke to a friend of mine who has MS and she mentioned her B12 levels were very low. She's now on quarterly injections and has seen a reduction in symptoms. I had mine checked recently and they were on the low side, so have added this to my supplements. Can't say I've had any significant change so far, but will be interesting to see in the longer term if it reduces episodes..
Hi Kc, yeah, your symptoms do suggest a B12 deficiency. Sublingual drops are about the best oral treatment you can take, but only a very small amount gets into your system from sublingual. If you have a genuine deficiency, you really need the B12 shots and a loading dose course if your B12 is tested and comes up low OR you are showing "neurological symptoms". It looks as if you could be. Maybe you should ask your doc to have your B12 tested.
Kc Dancer Kc said:
I had TN , had salivary glands swollen lots... Both in remission
4 years later have IGA. Deficiency, chronic fatigue, and neuropathy of feet. Oh and intermittent low potassium.
I am at a dead in with specialists
I have been taking lots of sublingual since 2008
Grows hair and nails…maybe should research b12 shots!!
This is intersting.I have fat thyroid (underactive),and today i read somewhere that thyroid is linked to coeliac and if you have issues with the thyroid,then you 'may be ' coeliac.I am sure it was in the daily mail. I am also low in iron.i take iron tabs,but also take a sub lingual vit b complex.I take the liquid /sub lingual one because i read that taking vit b in tab form ,rarely gives you the full effect as the acid in your stomach can destroy alot of the 'vits' before they work.I cant remember where i read that,but decided to take the sub lingual form. I also have acid reflux. Another thing to remember is if you have underactive gland,you cant take the meds with coffee or any other meds for a while. My nortriplyline was knocking out the effects of thyroxine,so my gland went more underactive.The iron cant be taken with any other meds because it doesnt asborb. I go onto the drugs.com for drug interactions.I now take my meds hours and hours apart,hoping to get full benefit
p.s another thing to remember is magnesium is important too,apparently alot of people lack this vital mineral. Its funny how you find out stuff along your painful journey
Hi again, Barbara. You DO sound as if you might have an autoimmune cluster. Have you ever been tested for coeliac? Quite a lot of coeliac researchers believe that coeliac disease actually causes the thyroid to be attacked, not the other way around. In other words, coeliac is causing your thyroid problems. If that was so, it could cause B12 deficiency which could be causing TN. Of course, one of the problems is you can be sub-clinical coeliac, i.e. your body is having problems with gluten, it just hasn't shown up as coeliac disease - yet.
It's increasing every year. They say it's partly due to more cases getting the correct diagnosis, but that doesn't explain it all. It is definitely becoming an increasing problem across all age groups. If you get a chance have a look at this link:
This is a great, very passionate researcher, Alessio Fasano, and his work on wheat related problems is terrific. He is bona fide, not at all 'alternative' and he is bang up to date - unlike most doctors' information. He will make you think twice about having a sandwich! There's loads of talks by him on Youtube and I intend to work through them all. Even if, as is likely, I turn out not to have coeliac disease, I think there is something to a wheat intolerance for me, as it's never agreed with me.
barbara said:
This is intersting.I have fat thyroid (underactive),and today i read somewhere that thyroid is linked to coeliac and if you have issues with the thyroid,then you 'may be ’ coeliac.I am sure it was in the daily mail. I am also low in iron.i take iron tabs,but also take a sub lingual vit b complex.I take the liquid /sub lingual one because i read that taking vit b in tab form ,rarely gives you the full effect as the acid in your stomach can destroy alot of the ‘vits’ before they work.I cant remember where i read that,but decided to take the sub lingual form. I also have acid reflux. Another thing to remember is if you have underactive gland,you cant take the meds with coffee or any other meds for a while. My nortriplyline was knocking out the effects of thyroxine,so my gland went more underactive.The iron cant be taken with any other meds because it doesnt asborb. I go onto the drugs.com for drug interactions.I now take my meds hours and hours apart,hoping to get full benefit
I suffered from TN1 and 2 and a autoimmune condition GCA both developed within 6 weeks of each other. Most doctor s said there was no connection but others said two rare conditions so close in developing must be connected. I am now in remission for both.
Hi Elstep, that's really interesting. You had TN and this GCA develop within 6 weeks of each other? (I'm not sure if you mean the two TNs had developed within the 6 weeks or the TN and the GCA). I'm afraid I don't know GCA. I'm going to go and look it up but in case I can't find it - can you tell me what it is?
Hi again, Elstep, Giant Cell Arteritis - is that right? I haven't had a proper look at it yet, but it is certainly exotic. I definitely haven't heard of it. If this is the right condition, you really ARE unlucky, and I'm with the docs that didn't believe it was coincidental. That's just too farfetched!
elstep said:
I suffered from TN1 and 2 and a autoimmune condition GCA both developed within 6 weeks of each other. Most doctor s said there was no connection but others said two rare conditions so close in developing must be connected. I am now in remission for both.
W.w.t.e.t. TN 1 began and diax at a&e electric shocks up face. Took anti epilepsy meds and it stopped. Felt very unwell blood takes taken as i had headaches loss of weight night sweats whole of matteress soaking wet and found I had GCA although only 50 as this like TN they report its usually older people who get it. I went onto high doses of steroids for it and slowly developed TN 2 although this was mild and bothered me mostly at night anti depressant meds helped with this. This all happened within six weeks of each other still not sure what triggered what but yes I am so lucky to have recovered or be in remission I'm not sure which but do pray I'm recovered. Best wishes to you mine was an electric cheek! X
Golly, Elstep, that sounds horrendous. Are you drug-free just now? If so, how long did you have your TN for before you went into remission, and how long has your remission been?
elstep said:
W.w.t.e.t. TN 1 began and diax at a&e electric shocks up face. Took anti epilepsy meds and it stopped. Felt very unwell blood takes taken as i had headaches loss of weight night sweats whole of matteress soaking wet and found I had GCA although only 50 as this like TN they report its usually older people who get it. I went onto high doses of steroids for it and slowly developed TN 2 although this was mild and bothered me mostly at night anti depressant meds helped with this. This all happened within six weeks of each other still not sure what triggered what but yes I am so lucky to have recovered or be in remission I’m not sure which but do pray I’m recovered. Best wishes to you mine was an electric cheek! X
I was on the meds for TN1 for just 6 weeks as my attack was controlled as soon as I took the meds. I then began to reduce. I then began huge amounts of steroids slowly reducing over a 2 year period during that time I was talking there amitrypline brrfore bed which I came off after a year.
6 weeks? That's great - wish I'd been so lucky! How long have you been in remission for now?
elstep said:
I was on the meds for TN1 for just 6 weeks as my attack was controlled as soon as I took the meds. I then began to reduce. I then began huge amounts of steroids slowly reducing over a 2 year period during that time I was talking there amitrypline brrfore bed which I came off after a year.
You have certainly posed an interesting topic. I have TN2, and my blood work shows that I am deficient in B12 and D3. Along with that I had to have my gall bladder removed several years ago; and I take daily prescription medication for GERD.
I have also been diagnosed with mixed connective tissue disease. I am currently being treated for Lupus because my symptoms are "Lupus Like", mixed connective tissue disease is a combination of auto-immune diseases (although I think it is time to do more research because I really feel my rheumatologist isn't listening to me. My joint pain is getting much worse and other problems that she is ignoring). I have a daughter with Lupus and another daughter with MS. My daughter with MS gives herself monthly shots of B12.
I also have Sleep Hypoxemia, which means that my oxygen levels fall a great deal during 80% of the time I am sleeping. I learned of this because I was falling asleep at work as well as having trouble with grogginess during driving. I am suppose to sleep with oxygen but insurance issues are preventing that at the moment. The doctor's answer is to give me another medication to keep me alert, which I take twice a day.
Naturally, due to all of the above, I suffer from depression - great, more meds!
So...maybe there is a connection. My PCP just did a series of blood work so I will be interested in seeing what comes back.
Been almost 3 years since my TN1 attack live in fear of it returning one day 2 years since TN2 used to bother me at night and 18 months off Pred. Was scared of coming off meds for TN1 but GP and consultant both agreed that its possible for it to be a one off attack. I do hope so. X
Hi Cathy. We certainly have a couple of things in common - gallbladder disease and Gerd, as well as TN. I've had the latter for fifteen years at least. I was also B12 deficient, but only just! However, it was enough to make a difference to TN and that's what matters. I did look at Lupus and wonder if I had it, but I don't have enough symptoms. It's a bit tragic when you are actually looking for diseases, like it's a good thing! It's just trying to find a reason/pattern to it all.
Certainly though, with a daughter with MS and your own medical history, you definitely have an auto-immune problem going on. Unfortuately I can't get my doctor to take the B12/TN connection seriously so he won't condier auto-immune seriously either. It doesn't cheer me up any that doctors might find a connection in years to come. It's amusing, in a black way, that doctors expect you to suffer in silence while they wait for 'evidence'; you wonder if they would be so keen if it was them!
Do let me know what your test results show - I'd be very interested to hear if your docs find a connection.
Cathy in MD said:
You have certainly posed an interesting topic. I have TN2, and my blood work shows that I am deficient in B12 and D3. Along with that I had to have my gall bladder removed several years ago; and I take daily prescription medication for GERD.
I have also been diagnosed with mixed connective tissue disease. I am currently being treated for Lupus because my symptoms are “Lupus Like”, mixed connective tissue disease is a combination of auto-immune diseases (although I think it is time to do more research because I really feel my rheumatologist isn’t listening to me. My joint pain is getting much worse and other problems that she is ignoring). I have a daughter with Lupus and another daughter with MS. My daughter with MS gives herself monthly shots of B12.
I also have Sleep Hypoxemia, which means that my oxygen levels fall a great deal during 80% of the time I am sleeping. I learned of this because I was falling asleep at work as well as having trouble with grogginess during driving. I am suppose to sleep with oxygen but insurance issues are preventing that at the moment. The doctor’s answer is to give me another medication to keep me alert, which I take twice a day.
Naturally, due to all of the above, I suffer from depression - great, more meds!
So…maybe there is a connection. My PCP just did a series of blood work so I will be interested in seeing what comes back.