Hi, I was on here about 2 months ago and 5 years ago my Neurologist thought I was dealing with Trigeminal Neuralgia. She didtdo any MRIs or CT scans. She went by my symptoms I was having. The issue is when your dealing with TN it’s an electric shock that people get through out the day. I never had that. Mine was constant pain all day long. It would settle down sometimes at night before going to bed. It just didn’t fit what TN suffers go through on a daily basis. My neurologist 5 years later cause it came back finally did the MRI and CT scan. She basically told me it’s not TN. She said that my jaw was out of line and was bent. A month ago my pain just disappeared again on it’s own. I’m worried cause the pain is gone again but I don’t know if it will come back again in 5 years or less. All I want is for me never to feel this pain ever again. It’s unbearable for anyone to live with. You don’t have a life when your dealing with this kind of pain. I see the facial specialist Nov 29 and I will ask her I have been pain free
For 3 months so what’s do we do? Fix what’s causing this extreme pain every day or do we wait until it comes back and get into the problem and fix it when I’m pain free? I will ask her what’s the best option for me. 35 years she has been doing this. I live in Toronto Ontario Canada our policy for seeing doctors is covered by Ohip but this doctor does not go through Ohip. She does it on her own as she is the highest ranked doctor for what I have so she will know what’s best to do. 500 bucks to see her for the first visit and 300 bucks each additional visit after that. They made it clear that obviously I will need to see her for the first time, and 1 other time within the year. After that part is done I was told my family doctor will be in on this as I guess she tells him what needs to be done to me every so often. This is something I have to do for myself cause living with that kind of pain every day, not knowing how long you will have it scares me just thinking if it and I’m a 50 year old man and I actually cried cause my pain was so bad. If this is the doctor who can save me for this never to come back then that’s the way I’m doing it. Anyone go through this before? Remember I had it 5 years ago snd 5 years later, exactly the same pain No different at all. So something is there and when it decides too come out , it will just come from nowhere and last months. I pray this doctor knows exactly what I have. According to her secretary, she knows. My family doctor even said she is the one that will get rid of this for you. I don’t know if the do something to my jaw ? Or whatever they do but I just need if fixed so I can start enjoying life again. Definitely the most painful thing I have gone through in my life.
Hey Chris,
I have had a few differing diagnosis, TN being one of them. The trigeminal nerve is one of the primary nerves of the skull. It has many branches feeding off from it, receiving messages from all over. Any irritation anywhere along the nerve or it’s branches can trigger it off. For some people it it can be a dental (teeth) issue, for some it’s a jaw thing, for some it can be an impact injury along the branches and for some it can be a brain massaging thing etc. And they can all be given the name TN.
It sounds to me like you are on the right track and doing the right thing. You are following it all through. You are seeing a facial specialist who should be able to answer your questions and (hopefully) give you some advice on triggers and how to avoid them. I’m sorry to say but specialist are never cheap and they certainly know how to charge. But then if they have the answers you seek, how much would you be willing to pay??
I’ve been on what I call ‘the medical roundabout’ a few times now, seeing more dr’s, specialist and wizards than I can count on my fingers (and toes), but if someone had the answer, I wanted it. Alas for me I haven’t found that answer but have learnt how to better manage it all. My advice exhaust every avenue open to you, trial them all. That one thing you think ‘Nahh, that’ll never work…’ could just be your key.
Best of luck with your appointment and please let us know how you get on.
Merl from the Modsupport Team
Please update us as to how that visit turns out/how you are doing .
I hope that you get help quickly .There are many doctors , many approaches ,but if you read through this site you will see that people DO find help often and the right treatment for them.
Of course you cried —-this pain can be pure torture .But thank God there are answers and meds that help.
I went through several years without severe pain and now it’s back ….but the right meds do help .
Someone once says “ when you get to the end of your rope —tie a knot and hang on “.
Help will come if we do not give up.
It’s not an easy road to travel but others do care and have been where you are at. And they have found the right help .
Wishing you lots of luck. This is a tough dx.
I like the tie a knit in the end if it. Great.
I’ve been diagnosed with TN as well… 3/4 years ago… MRI showed no signs of it. Ct scan either.
My ENT thinks it is TMJ… I agree. Went to physical therapy for tmj and surprisingly it helped.
Stopped my wheel of meds myself… couldn’t take the side effects.
I am now in Invisalign because of major dental work and my bite and jaw is now crooked and offset.
Hoping this helps me… please keep us all informed with updates with you…
I thank all of you for messaging me about this. It definitely has the symptoms of someone dealing with TN but when I had this 5 or 6 years ago the symptoms were exactly the same so I knew I was dealing with TN again and it came out of remission. Like I said , when my neurologist did things right this time , TN was not the right diagnosis for me on what the MRI and CT scans showed. Having a jaw that was not in line where it should have been really was a shocker. When I see her at the end of Nov , she made it very clear that she doesn’t need too see the pictures of the MRI’s or CT scans that were done. Only the write up the doctors put about what they seen in the pictures. She is 95% sure knows what I’m dealing with but reading what the doctors put about my jaw not being in line is the part she wants too read about. I was told I could see any doctor I want too about this issue but the homework I have done is this doctor is the one that will fix me. No pain at all for a good month now but I can’t even explain the pain I had for 3 months cause it’s pain that is indescribable. I will definitely let you all know what she tells me what it is , what would have triggered this to start up again 6 years later? When you explain to people you have pain , I don’t think they have the understanding of what pain you’re talking about. It’s pain that I think they might be under the impression it’s pain your feeling but the pain is so bad for me anyway, I wanted to just end it anyway I could but I don’t have the guts too hurt myself and I’m not that person so I knew that was out of the question. But just knowing my mind went into that direction, should tell people this person is dealing with something so major, he has thought about taking his life just because of his pain. No other reason at all, but I don’t have that in me to take my life for any reason cause that’s not who i’am but it just shows me it did put me in that state of mind all due to the pain I had all day everyday. I’m one of the legit people that needed help for whatever was causing this pain it was all real. But doctors may have thought I’m just someone looking for something to make me feel good. That’s what needs help. I needed help so bad but we all know what doctors go through everyday with people looking for any drug to make them feel good. But what about a person like you or me ? What do we do about this. They have too come up with answers before things get worse. People are hurting a lot so put your heads together and come up with some very important things we need help with. It’s going to kill us. Thanks for for response about this matter. I appreciate it so much. 
Sorry things are rough for you right now. I understand completely about this pain and wanting it to stop. It does play on our mental health. Take care.
Hey Chris,
Pain is very subjective and can only be expressed by each person’s personal experience. Trying to explain the intensity or type of pain to someone who has never been ‘here’…Impossible. I know this because I’ve tried. I had a friend who told me “A toothache is the worst pain in the world…” I looked at him incredulously ‘Give me a toothache any day of the week over THIS…’ Prior to my own situation I thought I knew pain, many years ago i had a compound fracture of my leg, with the bone poking out of the skin. That was painful, but it didn’t come anywhere near close to the neurological pain I now endure. I’ve often explained it like this:
When you hurt your leg it affects your leg, 6-8 weeks later it's all healed.
But when it's your head it affects EVERYTHING and 6-8 months later and
it can STILL affect everything.
This is a question with a million answers and if your experiences are anything like mine, every doctor you see will have their own views and own opinions, many of them conflicting with each other. For some people the triggers can be minimal almost insignificant like a change in jaw position as we age. For some it can be related to an illness or surgery and for some it can be a combination. One thing I have found is that rather than TN having a set diagnosis, it is more a combination of symptoms that are often used to give a TN diagnosis.
How do we cope? The best way we can. There are no rules on ‘how’, for some people it maybe medication, for some people it maybe hydrotherapy or relaxation techniques and for other’s it maybe there belief in a higher power. It really is a case of what works best for you. I’ve had dr’s tell me they have the answer, but none of them have. Sure some of their treatments have been beneficial but none of them have been my ‘key’…
For me, I have a combination of ‘tools’ in my ‘Toolbox’. From the simple ‘Altering my activity’ to ‘medications’ to ‘Laying in bed in a darkened, silent room’ when I’m REALLY in a bad way. It has taken me many years to workout what works best and when to use each ‘tool’. I wouldn’t say I get it right each time, but, as I say I manage ‘the best way I can’. for me.
Merl from the Modsupport Team
Hi Chris
I am suffering from this monster pain for over 50 years with spontaneous remission for verriying periods.
It first started on right side of face got operated in 1965 & had the 2nd & 3rd branch cut near the ganglion resulting in permanent numbness hence no pain.
I was unfortunate to have same pain on the other side (left) 9 years later and I am with it till this day.
In my case I have had long periods of remissions lasting years
Dear Chris
Sorry to hear about this. Could you describe exactly where you feel the pain?
If it’s around the jaw area, throat and ear, it sounds like you have glossopharyngeal neuralgia. More rare than TN, but equally, if not more devastating.
It’s often misdiagnosed as TN.
If it’s that, let’s connect.
Hi Chris: As a TMJ, TN and multiple other health issues I empathize with your situation. I also live in Toronto and was just curious if you were seeing Dr. Miriam Grushka.
Yes. All of this.
Medtation hhpnosis and tapping help so do liodcaine block do it yourself lie back and insert small amt so drips snd numbs it then ketamine spray help me
Hello bubbie 3 as a matter of fact that is the doctor I’am seeing. I heard she is the best and she knows what the problem is. My jaw in not in line , something they said I could have been born with. Like I said , the pain started 6 years ago. Went into remission. 6 years latter I woke up and had the exact same thing happen to me. 3 months then again it’s in remission. They told me this Dr will fix the issue. Did you see this Dr??
I was seeing so many specialists when my facial pain began 28 years ago, I’m not sure if she was one of them…I remember her name for some reason. I do hope she is able to help you!
Dianne
Hi, I never ended up seeing this doctor because my symptoms were so much better and I did believe I beat this. Well we are now in 2023 and my symptoms are back again but not as bad as before. Mouth is burning a little and my ears and facial area feel uncomfortable but the pain is not intense like before. I’m not sure if this will get worse. One thing that is definitely worse is my headaches and really bad nausea. I feel so nauseous but I haven’t been sick. I will see my family doctor and hopefully move forward on seeing this specialist so she can fix this problem. I hope your doing better. ?