Neuralgia - any link to Hypothyroidism??

[Loobs39]

I started getting severe pain in the left side of my face on Sunday - top and bottom jaw and toward the ear. I assumed it was either a bad tooth (although not likely as too far spread) or an abcess. I saw the dentist yesterday and had xrays but nothing has shown up. He has given me antibiotics in case it is an abcess and also, as I have a cold, he suggested a sinus infection was possible. However, I suddenly remembered today that someone I knew mentioned they got Neuralgia and it sounded similar. I am still unsure but I know there is a link between Fibromyalgia and Thyroid so just wondered if there was a link with Neuralgia?

[beaton]

Sounds like your trigeminal nerves are playing up (neuralgia) could be your cold but I get this often,I have an under-active thyroid.

[Loobs39 in reply to beaton]

Hi, thanks for replying - it is a pain isn't it (literally) and I don't know that I can tell what it is at the moment. It seems to be lessening but I don't know if it is Neuralgia and that it is just clearing up, or if it is an abcess / ear infection and the antibiotics are working? Only time will tell I guess.

[lucylocks]

Hi

I am having exactly the same problem with the addition of a numb tingly feeling in my cheek and a bad clicking jaw

Best wished browny

[Loobs39 in reply to lucylocks]

Hi - rotten isn't it. The pain is severe (although after my recent kidney stone, not so bad!!) and I'm still not sure it isn't a tooth problem or - with this very bunged up cold - a sinus problem. Time will tell.

[p1d2n3m4 in reply to lucylocks]

Brownie is this not tmjd?

[lynx]

I was strolling round stains and berrys chiller cabinets and kicked off a mother of headaches and shoulder pain. Tension triggered by cold me thinks. Keep warm and dont be afraid of the paracetamol.

[helvella Administrator Thyroid UK]

Some years ago, before being diagnosed with thyroid issues, I started to get quite bad facial pain. It would often start as a feeling that I had been shot. (Not that I ever have been - but the sort of pain I imagine a bullet would cause.) That would hit around my jaw and then continue to be painful up, down and around my face.

I became ludicrously sensitive to cold and had to wear a scarf and hat - often even indoors.

I read up on trigeminal neuralgia and some related things. None quite fitted but they were close. I took tramadol (found they helped and I was fairly OK with them) and wondered what else to do.

At the same time, I have had tinnitus for most of my life in one form or another. Looking that up suggested some people felt some benefit from vitamin B12. I tried. They had no impact at all on the tinnitus - but my facial pain reduced. I kept taking them - typically two 1000 mcg methylcobalamins a day to begin with - and felt slowly but surely better.

I know almost never have any pain whatsoever. And if I do feel anything at all, it is straight onto B12. Several times in the early days it felt as if the B12 worked a bit like paracetamol! I guess it took around a year to go from its worst to almost insignificant.

Please do not take it that I have or had pernicious anaemia, not even any definite B12 deficiency. It was purely a case of try it - and it seemed to work. It could be pure coincidence.

Rod

[helvella Administrator Thyroid UK in reply to helvella]

Sorry - meant to complete the story. I had recovered almost completely from this before getting diagnosed as hypothyroid, and even then only slightly. So am left entirely unsure whether thyroid issues played a role, or not.

[p1d2n3m4]

I have this,the same.was diagnosed a year later when i changed doctors. Said i had probably had shingles and it had gone into post herpetic neuralgia. I am still 16 yrs later having problems. Dr p says i am now low thyroid and adrenals so i take supplements.nhs say i am ok.I am now again on nortriptilene. I was not getting any sleep.Still struggling i am afraid and still exhausted.Only a little sleep still.

[ejh1]

I have facial pain, feels like a blocked sinus and my eye doesn't 'feel right' on the right - but the worse part is my neck. I'm seeing a physio at the moment who says I have bad knots in my neck and shoulder on that side, and that it could be trapping the trigeminal nerve. I also have trapped nerves all over my body and am SURE I am B12 deficient (never officially diagnosed but levels were down under 200, although now taking supplements daily, 1-2000mcg methylcobalamin). My trapped nerves elsewhere have improved dramatically, but the face isn't right yet. I get better days and worse days, but I just wanted to add my story as it sort of agrees with Rod's above, and maybe some B12 would help?

[Loobs39 in reply to ejh1]

In actual fact, I had my usual 2 monthly B12 injection the day before the symptoms started so I don't think there is any connection for me. I am now finding that the pain is almost completely gone so there is no way of knowing (at present) if it is the antibiotics curing 'something' or neuralgia 'stopping'. I guess only time will tell - if I get it again, I might be able to work out what is causing it - and if I don't, hurrah!!!!

[Chancery]

I have been diagnosed with Trigeminal Neuralgia and have suffered with it for the last 10 months. It is a very severe, electric-shock like pain. If you have it you will know all about it! There is absolutely no mistaking it. That said, it can start off in a more mild way but it will usually reveal itself for the monster it is eventually.

Having negative dental X-rays is a warning sign and you shouldn't have any dental work until you've seen a doctor.

One of the best ways to test for it is to try painkillers. If they work, even to dull it, you don't have Trigeminal Neuralgia. Ordinary painkillers are completely ineffective because it's not that kind of pain.

I have only just been found to be subclinical hypothyroid. I also had low B12. I was treated with this and it made my TN go into remission, (I hope; I am still lowering drugs) when strong anti-convulsants failed.

I should just point out the TN comes in attacks. There is a sharp pain, with waves of mini-shocks coming after. It is also triggered by certain things. These do vary, but broadly: winds, light touch to the face, eating, brushing teeth, showering etc. This is all classical Type 1 TN. There is also Atypical Type 2 which can present differently.

Feel free to ask if you want any more info.

[Loobs39 in reply to Chancery]

That sounds truly awful. I first posted about this a year ago and have not experienced the pain since then, plus it was nowhere near as severe as you describe so maybe just one of those things (I have learnt to accept that there are/will be a lot of 'one of those things' with this miserable condition) - I hope yours has stayed away??

[Chancery in reply to Loobs39]

Hi Loobs, very glad to hear that you seem to have had only a one-off strike. Let's hope it was sinusitis - that does seem like the most likely culprit with the pains you describe.

No, unfortunately TN never really goes away, so they tell me. It's incurable. I've had it constantly for ten months. The strong anti-convulsants couldn't clear it, although they did stop the shocks. Which was fabulous, I confess. Unfortunately the drugs are awful; they create a whole new illness. BUT, and it's a very important but, I got B12 treatment, after a lot of fighting, and it put the condition into remission. How good a remission I don't know yet, since I am still easing off the drugs (terrible withdrawal symptoms) but I am hopeful. PLUS I'm now eating on the right-hand side of my mouth for the first time in ten months. Can't be bad!

[janutee in reply to Chancery]

Hi Chancery

Did your TN start with mild tingling, numbness? I have had this a week and I'm fearful it will go full blown TN...also have hypothyroidism and lowish B12...plus mega stress over the past two months.

[Chancery in reply to janutee]

Hi Janutee, no, it started with tooth sensitivity. The teeth on my right side (where I have my TN) had been more sensitive for a few weeks then suddenly, one day, after eating a bit of mango skin, scraping the fruit off with my teeth, I got the most horrific full-blown shock in a front tooth, which is filled. I thought it was perhaps decay and came out in a cold sweat (I have dental phobia) but all was well until a few days later when I got another shock eating ketchup in McDonalds. Both sweet foods, you'll note. After that it went downhill in days, EVERYTHING gave me electric shocks. I was reduced to eating Ready Brek and had to wait till all my food was blood temperature - not colder or warmer - but it still didn't keep the shocks away. I was lucky, I did research on the net and diagnosed it myself within about two weeks, saw the doc and had it confirmed. Many people have loads of dental work done, including extractions and root canals, before discovering it ain't your teeth!

All that said, atypical TN can present differently. Also I'm not sure how most people experience onset, it's not something most sufferers talk about, oddly, so I suppose tingling could be your personal expression, as it were. My TN is all in my mouth, which makes eating and drinking a whole heap of fun! But you can get it all over your face in the various branches of the trigeminal nerve.

I will just say that I get 4 weekly B12 injections (which I have fought tooth and nail for) and my TN has never - so far - come back as badly as that original attack. I believe it's the B12 that keeps me from being a basket case, and believe me, TN sufferers often end up basket cases. Do let me know if you need any more help/info. Sincerely hope it's not your problem. I shall keep my fingers firmly crossed for you. X

P.S. If you have low B12 you really need to take serious action. It's just possible that you do have the starts of a nerve problem and you may just head it off at the pass if you start a strong B12 regimen. But before you do that you need to have your B12 formally measured and discuss it with your doc (although they are sadly VERY ignorant about B12 problems, but you can do B12 research for yourself. Just ask if you need any recommendations). If you don't have it checked officially you will never be taken seriously thereafter if you claim that you think B12 is your issue but you have already treated it yourself (it screws up blood test results and no doc will believe you). X

[janutee in reply to Chancery]

Hi Chancery

Thanks for all your info.

Interestingly I went out and bought sublingual B12 because I know it's low. Took two doses but now think I should hold off to more accurate bloodwork results. Not sure if that is the best thing to do... hate to not take something if it might help...grrr

Glad your TN is held at bay and (somewhat) controllable.

regard

janet

[Chancery in reply to janutee]

I feel your pain. You can see a lifeline in front of you but have to hold off while the wheels of medicine grind slow! But it really is important to have it correctly measured. I'll just point out that the UK NHS figures are too low for what's 'normal' as elsewhere in the world they consider 400 and even 500 to be a normal baseline (I think in the UK it's something stupid like 200). Mine was 384, although I suspect it had been (much) lower not long before, hence the TN. I strongly recommend the book "Could it be B12?" by Sally Pacholok. If I hadn't read that, I believe very firmly I'd be a LOT worse off now. It was purely because that book was the only mention I'd ever seen of TN as a B12 problem that I acted on it, although I then discovered historically they recognised years ago that B12 helps TN. Try telling the average deeply ignorant doctor that though! I had to prepare a huge dossier of research to get my doc to let me try B12 injections, but I am very grateful that I persevered. Had I waited on a medical professional to help me out my TN would be a lot worse by now, I think. Sally's book will tell you everything you need to know about the very serious risks of B12 shortage and give you far better info than any doctor. Best of luck!

[Hidden in reply to Chancery]

I had it for 15 years and accidentally met someone with the same condition who told me about a surgeon who cure his. The same surgeon gave me a balloon insertion and I am 99% pain free for the past 5 years. I am still using a pain killer as I am a nervous wreck and this triggers TN.

[Chancery in reply to Hidden]

Very happy to hear that, Doortjie. I'm exceptionally lucky that I've never needed surgery and that my TN is now a background noise, which is only really affected by extremes of temperature. Of course, it could come back full scale at any moment - that's one of the horrors of this disease, but likewise I may never experience it as badly again - fingers crossed. I still believe, firmly, that B12 saved me.

[Wassy]

Has anyone heard of it being related to hyperthyroidism too as my right side of my face has sharp intese pain. Its not always consistent comes and goes. I do take carbimozle which is for hyperthyroidism so am wondering too if it has push me into hypothyroidism and get it checked out. Does anyone have timescale of it lasting i kniw everyone is different so can't be precise but some sort of idea would be nice or is it permanent?