Hi all, I’ve had a problem with my jaw for a couple of weeks and yesterday was so bad that I ended up in an NHS walk-in clinic because I thought i was having heart attack or stroke as I know heart problem can affect jaw. My blood pressure and pulse rate was normal and was already feeling better by then anyway.
It is like a really very very tight sensation around my jaw, neck and back teeth… BUT it is not painful at all… just feels very strange and sort of as if it is not part of me and like a tingling cramp. At the same time my dizziness and double-vision (both of which I have daily) seemed much worse… but this might have been because I was so sure I was having heart attack that I was in panic.
I have had panic attacks before but they felt nothing like this… not this tight feeling in lower face and when it wore off it had reduced sensation… not numb exactly but like it didn’t have proper feeling. Still feels like that. Also inside of mouth feels same.
I’ve looked on internet and read about TRIGEMINAL NEURALGIA which you can get with MS and is a very painful condition which affect the mandibular nerve. All of the sites said it is always extremely painful… except one site which said that it can also be without pain but with strange sensations and tingling and numbness.
Anyone else know anything about this? I know it might not sound like much as it’s not painful, but it’s a terrible feeling like my jaw is going to shatter or my neck is going into a cramp and cut of my breathing.
I have PPMS and symptoms have got worse in past couple of months.
Does sound frightening Pat - You did the right thing going to the clinic - l always find l need a doctor when its ‘out of hours’.
l had the terrible trigeminal neuralgia off and on for years. At the time my GP did not realise it was connected to my spms. l was sent for tests with ear/nose/throat specialists. Had lots of quite awful tests done - only for them not to know what it was. The pain - as many on here will
testify - is excrutiating. lt was so bad at one time l told my GP that l could shoot myself. The pain was in my ear and along my jaw. l am glad you have looked it up - and its interesting to know that not everyone gets the terrible stabbing pain with it.
Do you feel more relaxed about it now you know its not a heart attack. l hope so.
l have just got back from walking my dog. As l was passing one of the cottages down the lane, Roxy stopped and would not walk on - then l noticed a banging noise. l thought it was a builder - then l heard a faint voice calling ‘Help me’. So l then realised it was the elderly lady [96]
who lives in this cottage. l knocked on the door of her neighbour and she went in to her - then the ‘post lady’ arrived - l told her what had happened. - l could hear the old lady calling out ‘Don’t call the ambulance - l don’t want to be taken away’ The post lady said she use to be a paramedic. Any way they did call out the paramedics and they picked her up and made her comfy. l can understand the old soul not wanting to leave her home. She does have carers go in - but there is no family. Last week we were passing a friends house - and in their drive was a strange white van and two men. Roxy did the same thing - stopped dead and just stared at the men. l rang the people who live there as they were at work. lt turned out that the men were there to fix a leaky roof. Roxy knows them well -they do sometimes take my dogs out - and she was sure these men should not of been there. Who needs neighbourhood watch with Roxy around. The odd thing is - my two Rotties do not bark at anyone coming to our house. They love visitors.
I had TN with the terrible pain then I had an operation on the nerve.
Now I don’t get pain exactly but a horrible numbness and tingling anywhere from my eye to right down into my shoulder. I don’t know if this sensation is the result of the op or would have occured naturally.
Non the less I take tegretol which helps so even if your TN is atypical you might get some relief with medication.
Try posting a question on the TN Association boards perhaps they will be able to help. ( http://www.tna.org.uk/)
I too have T N the pain is so bad thar when i go out in the cold it feels like my face is burning.
I am on pregablin for the pain and also fentinil patches which i change every 3 days, this dose help somewhat with the pain, and makes it almost bearable and i do know if i missed taking the pregablin cos the pain comes back withithin a few hrs.
Ive not had it the way you desribe but it may be worth speaking to your dr or ms nurse, hoping you feel better soon.
Im new to this ive had neuralgia for about two years and have just been diagnosed with MS (yipee)
My neuralgia has got worse but all the doctors will do is pills (co-codamil & tegratol) which make me sleepy depressed & im still sore. Do any of my fellow sufferers have any remedies that work and whats a MS nurse
I experienced an electric shock down my jaw and my teeth would hurt and face numb with tingling. It affected my right side, but sometimes I get that wet electric shock feeling (like freezing cold water) going down under my right eye? Dont know if its connected or another nerve causing that.
I was prescribed Tegretol and it did help although I didnt like the side effects of them, so weaned off them when I knew it was safe to do so. Mine cleared up and only plays up now every now and then.
Sorry C, only Tegretol that I know of can reduce the pain of TN? With some msers it seems to go on and on and others seem to just experience one episode. Hope you all begin to feel much better.
Still not diagnosed but experienced what I called “lockjaw” (neck,teeth and jaw) for a couple of hours when my “episode” (diagnosed as TM) peaked.
I could barely talk and though I could hear everything going on around me I felt almost “locked in”. It came with dizziness and leg collapse. Instead of waiting to take Amitryptyline at night (this was 2pm) I took 2 and started to feel less weird after about an hour.
I am well on the mend but have lost my gag reflex…???
I have since had TN and while it makes me catch my breath … for me it is quite different…pure pain not the rigidity almost paralysis of the other incident.
It’s nasty Pat so I’m sorry for you and hope you perk up soon
Just seen this and although years old i had to say my hubby has this and his dentist who visits diagnosed it. He is now on carbamazapin twice a day and it works for him.
hi all Pat, are you on medication ? I have this dull pain in my jaw all the time since ny last attack and it scares me but it seems to be under control. I have been on 600mg carbamazipine twice a day. But now I have to change to Gabapentin. Anybody have experience with that? It is making me so incredibly tired and drowsy. But I am willing to take that, if it only keeps the pain away. I wish you all strength and hope. Ella
Hi, I started off with trigeminal neuralgia before I was diagnosed 3 years ago. The pain in the right side of my face was unbearable, Tramadol sorted the pain out, I am on 100 mg 4times daily. If I miss a dose then pain returns and reminds me to take the medication on time. I wandered if any one has nastagmus (wobbly eye). I am really suffering with dizziness, vomiting, fatigue falling down and light sensitivity. The opthalmology consultant informs me that my eyes are perfect, the ear, nose and throat consultants tell me my inner ear and balance is perfect. It’s the dam Ms that is causing all the problems, has anyone had similar symptoms, if so what did you find helpful.
I have Trigeminal neuralgia. Initially in my right hand jaw the pain used to bring me to tears. Eventually I went into remission, and forgot all about it. And then about 6 months ago it decided to remind me about pain…but in my left side from my nose and eye across my forehead, and into my head. My eye runs, and I’m unable to see through it.
The only way I c a n describe it is that it triggers with little electric shocks, and then I get the real attacks. If you can imagine a whole police force, shooting taser guns into that area all at the same moment, that’s h o w it feels, it drops me to the floor, and I can hear someone screaming uncontrollably (me)! It’s horrendous, but lasts just about 2 minutes (a lifetime lol) !
I’m on 1000mg tegretol (carbomazapine), 600mg gabapentin, and 40mg amitriptyline, which has pretty much brought it under control, but I wouldn’t wish the pain on anyone (and I gave birth without pain relief).
Snow Leopard, daft as it sounds have you considered indigestion…when my reflux is bad, I get chest pain and pain in my jaw but its not pain as such…
I’ve had it one memorable morning in April, 2010. Right side of face and I could see bits of my forehead being pulled around. All three branches of my TN. Cleared after four hours. Not had it again. I’m glad. It’s the same pain as in my foot, electrocutions.