BEATEN

I don't know as I saw a neurosurgeon for an opinion on friday and he said my case is complicated. He said my symptoms don't fit TN or A typical TN. I do have degenerative disc disease in my cervical spine and they all tell me my neck wouldn't cause all the other pain but they don't know whats causing it and tell me they can't help me. I hear this same thing over and over and over and my cheekbones can ache at times when my pain gets severe. Been a long tough road with no help. Thank you for your comment any opinion I'm open to

I don't have pain in my teeth that all went away a couple years ago grateful for that. I believe I need to figure out how to live with this pain and my rhemutologist put me on plaquinil 200mg once a day as I tried all the other stuff the first 2 years and no relief from any of it. I wish you the best as chronic pain is horrible no matter what the cause. Try and have a great week.

Lori

honey I got 1 word SURGERY!!! IT WAS A GODSEND! I can kick myself for waiting 3 years I wish I would have gotten it from day 1!! girl call DR. JOHN LEE PENN MEDICINE IN PHILLY he is the best in the business !! LITERALLY done over 500 mvd procedures and was the protege of the man who invented it!! I was pain free when I woke up from surgery and walking around in 2 days like nothing happened! girl call that Dr. ITS ONLY A MATTER OF TIME BEFORE YOUR BODY GETS USE TO ALL THOSE MEDS..🤦🏽‍♀️🤦🏽‍♀️

hi , i had extensive dental work done (20 crowns inserted) over a very brief period of time approx. 1 week. a couple of days later i had this lower jaw discomfort which felt like a pressure of some sort.

after visits to dentists and physios and Root canals and TMJ exercises i was finally diagnosed with TN exactly 1 year after the pain. tried gabapentin firstly 100mg tablets twice a day.pain went almost straight away to my relief. however after 2 weeks the pain returned. specialist said i was on baby doses and he bumped me up to 4 100mg per day. (still a very light dose) still suffering with pain similar to a burning sensation in the lower jaw/ chin area. im 23 and to think i may suffer with this for the rest of my life is daunting. the pain is on my mind everyday . those suffering with this horrible condition please know that you're not alone.

I have not posted on this topic before. I thought there was hardly anyone in the world with this illness - Trigeminal Neuralgia. My doctor have always said it is rare, and usually occurs in 'old' people. I was 55 when I started getting symptoms. It was shortly after a dental process of having two crowns fitted, after two root fillings on the same teeth. The whole process took several dental visits. When the dentist started drilling my tooth for the root filling I experienced pain like I have never felt before. I have fillings before, including root fillings, and none of them were particularly painful, so I was never really nervous of going to the dentist. She, - my dentist - kept giving me more and more local anaesthetic injections, and trying to drill again, but it was still really painful. In the end she just wanted to stop, - in fact my cries of pain were distressing her! - but I said, - no please complete the procedure - because if she didn't, I could see it would just lead to more complications.She then wanted to refer me to a patient who would sedate me first, for the rest of the work. I asked if this would be a general anaesthetic, but she said it wouldn't, just strong sedatives. I was still worried. I really wanted a general anaesthetic, but to have a dental procedure under a general in the UK - and I believe in quite alot of countries, you need to be taken into hospital, and I was told, that just didn't really happen anymore.When I went for my next appt. the drilling still hurt, but after the roots had been done, having the crowns fitted was much less painful. However, I needed my husband to come with me by that point, and we had noticed that after my visits when I was practically screaming and shouting in pain, when we went out we could see that some of the other patients were looking at us in horror, and looked really frightened! I was pretty shocked by the whole experience as, as I said, dental work like that had never hurt me in the past. I had a few years previously been diagnosed with TMJ - 'Temporomandibular joint syndrome', after a fall, which was painful and frightening at first, but when I went to see a specialist, he prescribed exercises and also use of an ultrasound device over the jaw area affected, - and after a while, I bought one instead of going to my physiotherapist to have this done, and managed to control the TMJ quite effectively, until after the dental work.At first, after some nerve pain in my mouth, which seemed to recede, it was just the TMJ pain which was very bad, and affected all the side of my face, then slowly the neuralgia attacks started. I had an MRI, - results - fine - and was referred to a Neurologist, who prescribed Carbamazepine and Gabapentin. At first I was on low doses. Because my pain seemed to initiate in the beck of my neck, my Neurologist also thought I probably had Occipital Neuralgia as well, so I had two 'GON' - 'Greater Occipital Nerve (GON) blocks' - injections in the back of my neck, which helped for a week or so, but then the pains returned. That was about two and a half years ago. My symptoms have gradually got worse and worse over the time since, limiting what I can eat, to now mostly liquididated foods, and I can also eat chocolate and some types of biscuits, and yoghurt and icecream, - no alcohol at all, - tea and weak coffee are OK. Anything else triggers attacks of TN, and I get it now on both sides of my face. I find that the only thing which really relieves it, is very vigorously flossing my teeth, spending quite a bit of time, flossing hard between each tooth, and then the pain dies down, but leaves me with a a very sore and tender neck and jaw. After that, I am exhausted and just have to sleep. My son - who is 23 - doesn't really understand the disease, and gets annoyed with me sometimes for saying, 'Oh I can't eat that, or that, or that, - especially if it's something he has cooked'. My husband is just upset and concerned for me, and wants me to have more investigations and treatments.During all this time, I have had to increase my doses of Carbamazepine and Gabapentin, so I'm now on pretty large doses, and I get unpleasant side effects - dizziness, sometimes practically double vision, lack of coordination. I have a telephone appointment with my Neurologist in a couple of days - due to the Covid-19 situation, we are still largely limited to this type of appointment here, though hopefully this will change soon as more and more people are vaccinated.I will be telling her that basically, the medication is not working effectively - but I get some symptoms if I don't take it at all , even if I don't eat. I have lost weight, and have digestive problems too, - not uncommon I believe with all this. I am terrified of going to the dentist, and have been a couple of times, but for minor things, and won't have fillings. Luckily I haven't needed any so far. My dentist is getting a bit cross with me now because of my phobia, and says he knows about neuralgia, and I should probably see an Orthadontist for more investigations, and this may be a good idea.I had a particularly horrible attack today, after trying to eat a small bit of fruit crumble. I have eaten it before in the last couple of years, and been Ok.I am wondering if some of the chemicals in certain foods are triggering the attacks, which are bilateral - just my luck!I am sitting here now at my computer eyeing a Mars Bar on the desk, which I am pretty sure I can eat without getting an attack, but of course its just more unhealthy food. Does anyone else find that it's particular foods that trigger their attacks, and they have certain ways of alleviating the pain, which just goes on and on, and won't end unless you do the things which help, - in my case vigorous flossing, which can take over an hour.-, and is painful itself? It's very tiring, and I don't want to have it more than once a day, or even daily, and then have lasting soreness afterwards, so avoid eating normally most of the time. And the side effects from the drugs are just horrible!

Sorry, - I can see there are some mistakes - so I have carried on after posting, - I said my dentist wanted to refer me another patient - I meant dentist.

Please forgive any other mistakes, I am very tired and very sore from my attack today, but I really wanted to talk about this!

I forgot to mention that I also take valium daily, - initially 5mg, then 10, and now I find I have to take 20mg a day - which I know is alot, and really inadvisable, but it's really the only way right now that I can deal with this, and still function between the attacks.