ihave got trigemedial nuralgia now

[editheve]

hi i have hash thyroid 10 years chronic sinuis issues last 2 years and i have now got trigemedial left sided face. nose ,gums, teeth pain, sore roof of my mouth has anybody got these with their underactive thyroid i dont want to take gaberpentin because my dad has alzimers and i am afraid of the long term effect of these meds im just suffering in pain its a dull ache most of the time till it fires off into shooting mouth roof pain up into my nose it lasts minuits but keeps occuring randomeHELP please eve

[helvella Administrator]

First, have you ever had your vitamin B12 level tested?

Second, have you tried supplementing with B12 (e.g. 1000 micrograms of methylcobalamin daily as a lozenge, tablet, etc.)?

[editheve in reply to helvella]

my b12 was 734 doc said normal ,o.34 tsh docs lowered my dose back to 100 from 125, free t4 was24.7, serum folate 10.1 ,vit d 67.i, T3 4 .1 , im on vit b complex seluim and zinc 100 vit d vit c and 100 artro levothyrozine i will get a vit b at a stronger dose that you suggested thanks eve . i really dont understand these can you help

[helvella Administrator in reply to editheve]

I don't pretend to understand why or how it works. But I am convinced that B12 did (eventually) help with what sounds similar to your trigeminal neuralgia.

I could be totally wrong. It might not have been the B12. But at least it made me feel as if I was doing something to help myself!

[editheve in reply to helvella]

just bought holland and barret 1000 vit b 12 and omega 3 fingers crossed

[Charlie-Farley in reply to editheve]

Hi Editheve 🤗

Without the ranges (in brackets) it is difficult to comment on your results- but I would say I’d be interested to know where everything sits in range and I know you have the pain which will tend to eclipse everything else but have you any other issues? Also can you just confirm these problems pre date the surgeries 🧐

Did the surgeries make anything worse or no difference?

[editheve in reply to Charlie-Farley]

these problems were before the surgerythe consulltant said he could cure the septum but he thought the paiin was trigimedial nuralgia he put me on 300 3 times a day of gaberpentin i had my surgery 3 months later which worked i was ok so i took my self off gab as they are epelepic drugs i was ok for 4 months then i got sinuis issues and nose fce pain again i had 2 ;ots of anti bs was ok for6 weeks then sinuis issues came backand nose face pain the antibs seem to clear the sinus probs stuffy nose headaches etc but im still left with nose mouth gum face pain

[Charlie-Farley in reply to editheve]

I don’t know if my experience is relevant but! Had a tooth that had been crowned and there was no visible sign of anything wrong but the pain never went away and I ended up having to get it pulled during lockdown as I couldn’t stand the pain anymore. This was a few months before I was diagnosed with hypothyroidism AND I had sinus issues over the previous few years. Actually thinking about it some of my teeth were extremely sensitive too and that all seems to have cleared up since getting on full therapeutic dose of Levothyroxine. 🤔

I used NICE guidelines to calculate my potential therapeutic dose, but I’m a big bird and 5’8 and 15 stone. We are all different. 🤗

[editheve in reply to Charlie-Farley]

thanks sinus issues are connegted to levothyroxine either not enough thyroid meds or sensitive to the fillers so i tried to get tirosint but its american and got no chance here to get it i think thyroid sinus and trig nuragia all connected but i cant get rid of the trig nuralgia thyroid is forever sinus issues off and on seems to clear with anti bs so how do i get rid of facial pain started 1000 vit b tabs and nuralgia drops dr reckeweg r70 herbel no probs with my teeth had scans and checks every 3 months so the tinglings and mouth gum nose face pain must be nuralgia hope it s goes soon had it since the 2 week in nov tikk present day eve

[Charlie-Farley in reply to editheve]

I so hope you get sorted because when I had sinus problems it felt like my face was being torn off. You really do have my sympathy. Even ABs didn’t clear it last time. I was so desperate I ended up with my face over a steaming bowl of hot water and putting a couple drops of tea tree in at a time. That cleared it and I followed up with two more head steamings to make sure it didn’t come back. It was desperation- I didn’t have any menthol crystals. Thank goodness it worked.

[editheve in reply to Charlie-Farley]

still waitung for scan results i have got a facial nose steamer its good for my sinuises but does not help my nose gum pain its a nighmare was not to bad yesterday but today in pain buti really dont know why it keeps fireing off i go to the gym 3 times a week walk other days even if im in pain i have tio keep moving otherwise i would give up and stay in bed because thats the only time im not in pain as soon as i get up and move around my nose pain starts its like the prssure you get with your sinuises but everyday most days since nov 22 but thanks for all your kind words and help eve

[Charlie-Farley in reply to editheve]

sending virtual hugs - hang in there Eve. I truly admire your spirit- going to the gym and pushing through. 🤗

[editheve in reply to Charlie-Farley]

thank you i needed that eve

[Charlie-Farley in reply to editheve]

We all need it from time to time- I’ve been in receipt of a lot of hugs over the years when I’ve been struggling - real and virtual. I follow the ‘pass it on principle’ but only for the positive. 🤗

[editheve in reply to Charlie-Farley]

its good to be positive thank you ,everyone on here are so nice and helpful its nice to know its not only you who.s suffering but would be nice if we all were better and well and happy .

[Charlie-Farley in reply to editheve]

Ain’t that the truth! ♥️

[Marz]

In previous posts you talk about your sinus issues. Could your current problem be connected ? Did you try the XClear Spray suggested in an earlier post of yours ? I have had good results - also Colloidal Silver spray. Both have kept the sinus issues at bay. 🌻

[editheve in reply to Marz]

H on dymista and mometasone neither seems to help can you get the ones suggested at a chemist ivd had 3 lots of anti bs and it seems to have settled down but im still left with painful nose and mouth pain i feel like i have a pencil stuck inside ivd just had a private scan awaiting results he more or less said it most prob trigimedial nuralgia but i opted for the scan to eliminate a sinus complecation ivd already had a deviated septum and turbine reduction a year ago this nose thing is a secondary problem to my septum he told me that a year ago but i cant get to the bottom of it eve

[Marz in reply to editheve]

I buy both on line. Helvella suggested B12 - do you supplement ?

How is your gut ? After 3 lots of AB's I would imagine it is delicate...

[editheve in reply to Marz]

my guts ok ill try what you said thanks

[Marz in reply to editheve]

Do you take B12 ?

[editheve in reply to Marz]

i take a b12 complex but ill get a stronger one just v b 12 thanks

[Marz in reply to editheve]

I think it is a B Complex which contains B12. Which brand are you taking ?

Have you researched the connection between B12 and Trigeminal Neuralgia ? You may need regular B12 injections...

[editheve in reply to Marz]

just been out bought vitamin b 12 1000 ill try anything for this pain i have googled it and i thin k its connected 2 years of pain 2 cat scans mri scan allergy test all clear noone has rver mentioned shots or vyt b 12 im always looking for help thank you so much fingers crossed rve

[Marz in reply to editheve]

Which brand did you buy ? Some are better than others !

[editheve in reply to editheve]

The surgery worked ivd been like this for over 2 years now up and down just waiting for results from a private cat scan to rule out chrinic sinuisitus has one and mri in 21 all clear its just to rule out its nothing hidden away in my nose

[Hunny_BEE in reply to editheve]

i don’t know if any of your physicians have checked for something called “Eagle Syndrome”. It is a rare disease — which is an elongated styloid process bone – a thin bone that grows from the base of your skull. When it grows too long it can create many issues that sound very similar to yours.

I went through several years of facial pain, was diagnosed with TN and prescribed Gabapentin, which I took for awhile but decided I didn’t like taking it. The facial pain went away — but not completely. Then I started to get a sore throat that was extremely persistent. After three visits to my ENT and multiple scopes of my sinuses etc. he finally reached in and prodded the area where my tonsils would have been and found the problem! The tip of the styloid bone was poking up underneath the skin and felt like a pencil point poking there! (An MRI confirmed)

I had surgery and it definitely cured some things but I believe some damage had been done to other things as it slowly grew in my neck.

Perhaps this helps your search? Here is a forum that was very helpful in learning all about Eagle Syndrome and getting me to the right surgeon and proving support … just like this one. 🌻

forum.livingwitheagle.org/

[editheve in reply to Hunny_BEE]

thank you i will reaserch about it today eve

[editheve]

eve sorry not got my specs on lol

[editheve]

holland and barret vit b 12 1000 slow release and i also got 1000 omega 3

lease

[Marz in reply to editheve]

From reading here you will have noticed that B12 containing Methylcobalamin is suggested. The H&B product is Cyanocobalamin and 1000 mcg is small. Always check ingredients. Jarrow B12 on-line would be better - 5000mcg. Also a good B Complex to keep all the B's in balance....

[Baggiesfan]

Following and really hope you get some relief. I've similar pain but I think its glossopharengeal neuralgia, neurologist not specific. All I've been offered is gabapentin over the years which like you I'm very reluctant to take. Currently trying acupuncture but not really helped unfortunately. Might try cranial osteopathy, read that might help. My B12 is well up in range so haven't tried that route yet, got to be worth trying though, really hope it works for you x

[editheve in reply to Baggiesfan]

awwthank you so sorry you suffer to,o ivd been looking at a chiropractor who looks at the top of your spine i get cracking and a stiff neck often and shoulder pain but had this most of my lifebut only this pain in te last 2 years since i started getting on and off sinuisitus it all xstarted with my sinuises eve

[editheve in reply to editheve]

rest cloud neck shoulder relaxer amazon im waiting for it ill try anything once you triga nerve goes into the top of your spine so hoping if its trapped it may release it which may release the pain signals in my face hopefully

[Cornwaller]

Oral b12 therapy is not as effective as injections and you may need to consider a higher dose than 1000. Additionally nerve repair may take months. I don't say this to discourage you from trialling this route - quite the opposite - but to suggest you research the dose and to manage the time frame to judge effectiveness. Good luck.

[editheve in reply to Cornwaller]

ok will look into injections thanks

[Litatamon in reply to editheve]

I was diagnosed with trigeminal neuralgia after years of pain (MRI). At the same time my b12 was found to be deficient & I was started on shots for the deficiency. The two were not related in care, it was a coincidence in timing.

Trigeminal Neuralgia can have dormant periods but I have not had an episode since about a month after I finished my b12 loading shots in 2019.

Also note:

*Like others have said nerves can get worse before they get better with b12 supplementation

*You might get along fine with methylcobalamin but there are quite a few of us on the PAS section here who do not. Methylcobalamin makes me cuckoo for cocoa pops. So be aware that some feel no difference between the different forms and some absolutely do.

*I would go for b12 shots in your case to experiment - there is no danger of excess b12 unlike some other vitamins and minerals

*If b12 shots do not work for you, there are options. During my initial investigation of the trigeminal neuralgia I found many cases where surgery was very successful, and therefore no need to take the drugs for life. (Just read fifteen's successful outcome with another drug, so many possibilities for you. )

All the best to you. I am so very sorry you are going through such awful pain.

[editheve in reply to Litatamon]

thank you so much the vit b12 is cyclo not the methoi dont know the difference lol

[BB001]

You've given results for fT3 and TSH. Did the doctor do a fT4 test? I'm wondering if you're a poor converter of T4 to T3. At a fT3 level of 4.1 I would be having hypo symptoms, as I need my ft3 to be around 5.2. My fT3 range is (2.5-6.0).

FT3: 4.1 pmol/l (Range 2.5 - 6.9) 36.36% it could do with being at least 50% of range.

thyroid.dopiaza.org/

[editheve]

t4 low 0.34 range o.35 5.5dr took me off 125 levothyrozine to 100 free t4 24.7 range 10.00 20 ,00 these were done at a private hosppital vit b12 734, vitd 57.1, crp 4 ,esr14, serum folate 10.1 dont understand any of these staarted taing selluim and zinc vit d vit b 12 omega 3

[Fifteen]

Hi, are you getting proper treatment? My story may be helpful.

My trigeminal neuralgia agony began in August 2015 - in the middle of my breast cancer operations. It was not diagnosed until April 2016 when I finally got an appointment with the expert, Professor Joanna Zakrzewska. (I found her - my doctor gave no help. He had never heard of her, nor did he know anything about the condition).

She is the world expert. She travels a lot and does not do private, so the NHS wait is long but the only way to get proper diagnosis and treatment. She changed my medication totally and those horrendous stabbing fiery arrows stopped attacking my brain. My attacks are on the right-hand side.

Unless you have trigeminal neuralgia, it is impossible to understand those crushing attacks. I only lost two perfectly good teeth as my dentist decided the stabbing pain must be due to nerve problems. I know of people who lost most of their teeth before the dentist decided it 'must be something else'. I once collapsed at a birthday dinner from the extraordinarily intolerable pain and was taken to hospital. No help there, of course.

There is nothing similar to this condition, many doctors and most dentists do no know how to diagnose it so many sufferers continue for years without receiving understanding or treatment.

Joanna had put me on lamotrigine. I read about Lamictal, a particular version of Lamotrigine. Various patients wrote that they found it much better. It is unbranded so your doctor can specify it without NHS problems. I have used it since 2016-2017. While lamotrigine did not help, lamictal has worked well - so far.

A UK university did some research a few years ago with the help of the Trigeminal Neuralgia Association UK. It was looking at the impact of tri gem medication on cognitive abilities, as far as I could tell. We were not given our results. Thankfully, Lamictal does not seem to have had a negative impact on mine. With all the problems of hypothyroidism, I do not need anything else impacting my cognitive abilities.

You have my sympathy. As you probably know, trigeminal neuralgia is regarded as the most painful chronic pain ever. The French have a special name to highlight this. No one knows what causes it.

I have gone for many years without only rare outbreaks. The lamictal keeps it under control most of the time. The rare attacks are usually brought on by extreme stress so relaxation and meditation - or just sitting quietly - help. I now take 100mg in the morning and 75mg in the evening (as agreed with a private neurologist). When I get attacks I increase my dose to 200mg until it is under control again.

If you have not already contacted them, the Trigeminal Neuralgia Association is a very helpful organisation.

I wish you well - and ever increasing pain-free periods.

[editheve]

oh thankyou so glad you have yours under control hope i can sort t soon i cant even gently touch my nose withoutsensations and pain no one understandss because they cant see it thanks once again eve

[pansies7]

Hi editheve, my husband has Trigeminal Neuralgia, and after several years he has been able to completely come off of his medication (Carbamazepine) with the help of supplements. Here in the States Gabapentin is not usually used to treat Trigeminal Neuralgia, it is not deemed effective in helping to control the firing of the nerve. It is important to find the cause of the neuralgia, what are the actual mechanics that are causing the nerve to fire, creating the pain. For my husband, the cause is MS, for other people it can be caused by a structural problem where the nerve is entangled with blood vessels in the neck, causing the random firing. Surgery can be helpful in these cases. I understand that sometimes dental surgery can also cause the nerve damage. For some time, before he was diagnosed with MS, my husband thought the cause of the pain was due to a dental issue because of pain in his teeth! But this was not the cause. A neurologist might be your best bet for finding the cause of the neuralgia, and then treating it. It is such a dificult pain to cope with, you might consider using a medication at first, then using supplements over time, and eventually slowly cutting down the meds until you can possibly come off of them altogether. My husband found Gaba, a neurotransmitter, helpful in calming his nerves, and he also takes Benfothiamine and another form called TTFD that is being extensively researched right now for use in a number of neurological disorders, it rebuilds nerves. B12 is certainly good for nerve health also. Supplements can be very helpful of course, and usually do not work overnight, they need to be taken over time, which is why a medication can be helpful in the meantime, and eventually stopped (hopefully). I wish you the very best in your health journey, this neuralgia can be very challenging to cope with. You might see what you can learn through a trigeminal Neuralgia support group too, lots of info there I'm sure.

[editheve]

thank you for your reply i will look on the support group eve