Dont know whats going on?

Hi!!

Hope ye are all keeping some bit human.
Ive been having some issues. Im dx TN 7 years , first on the left then for 2 years then bilaterally for 5 years.
I had a filling done in march, all went well. Dental pain returned. Had root canal done. Dental pain renturned, worse. Had tooth pulled, pain returned and hurt worse than before, spreadin from that tooth to whole area.Had tooth pulled. All this time i was suffering very badly with my sinus, so i have been treated with antibiotics for acute sinus infection now for 3 months. Still very bad and GP reckons its down to the root canal. She says the pain im in now is sinus related. Dentist says it is nerve inflammation.

Long story short im really starting to think its ATN that i have. I have a burning, serious pressure , feels like something is trying to burst out of my teeth , jaw and gums with sometimes very light shocks compared to the full blown shocks i would normally get. There all the time and made worse when i exert myself and of course smoke, which is heart breaking to me cos it was the one thing TN hadnt taken yet while i wasnt in attacks.

Just looking for some advice or some feedback i guess. Anything at all would help.

Hey Suzi,
Welcome Back.
My name is Merl and I’m a member of the Modsupport Team here on Ben’s Friends.
Over the years of trying to find answers TN was one of my many pseudo diagnosis. I’ve needed a few neurosurgeries to deal with a growth in my brain and in the process of all of this there could ‘highly likely’ have been damage to the trigeminal nerve (or that’s what one Dr identified). I have been told it could be atypical also. The neurologist who gave me the diagnosis recommend repeated treatments of Botox. Personally I found the whole treatment very painful but persisted with the treatment for 9mths with no improvement for me anyway. The neurosurgeon who did the surgery said “It’s nothing I’ve done… It must just be YOU” or (My favourite) “You just have a low tolerance to pain” GGggrrrrr. Not very helpful.

I’ve seen dentists who thought it was a dental issue, so I had all of my top teeth removed. It wasn’t my teeth. I saw a physiologist who thought it was an issue with posture, so I went through repeated physiotherapy, acupuncture, hydrotherapy etc. I improved my posture, but still no resolve.

The trigeminal nerve is one of the primary nerves of the head. Damage anywhere along the nerve tree/branches can trigger TN and although I may feel pain in a specific point it was explained to me that this does not necessarily the specific point of damage nor irritation. Trying to locate the source/cause of my ongoing issues has been near on impossible for me.

I just try to manage the best way I can.

Merl from the Modsupport Team

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I have also tried many sources but the only thing that helps is the drug carbamazepine/tegretol.
Living with pain is the worse. I wish you luck in finding what helps you. I’m sorry I don’t have much for you but it sounds like you have tried many things.

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I suffered with TN for 9 years. Frist it was regular TN and approximately 7 years later it turned into atypical TN with the burning sensations and pressure. Tried many medications along with alternative treatments. Nothing worked for long. I finally decided to have MVD surgery in February on 2018. I traveled to UPMC in Pittsburgh for surgery by Dr. Raymond Sekula. 10 weeks post surgery, I was pain and medication free. I still am 4 + years. My only regret is that I waited so long to have the surgery. Dr. Sekula is currently at Columbia, New York . Google his name and you will find him. I hope this post helps you. :pray:

So sorry for your pain!
Will keep you in my thoughts and prayers.

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Please do not have any root canals. I have TN with A typical face pain. I have taken every medication, had gammaknife and MVD surgery. also root canals. Which made it worse. Its been 20 years and is now spreading to my right side. This disease is just not curable. Now, that being said, there are individuals that do get relief with medications. I am not one of those. Legal or not I have resorted to marijuana. It helps dull the pain so that I can function. Look for anything natural to help you.

I am so sorry that you have been through so much. I had TN pain in the middle of teeth correction in 2009. It was manageable with pain meds and nerve pain medication. I was one month every two years, but it gets more often and stays longer now, almost all the time now. I have tried medication and injection, but it only works for a while. per MRI, I have not compression to the nerve, so I am not considered the surgery. Besides I have heard that many patients’ pain return after surgery, so I do not consider surgery anyway. My direction is also towards natural intervention. CBD product could be a choice. It works for seizure. It could work for TN. I am allergic to CBD oil, so I am looking for something else that can reduce anxiety level. For one single episode attack, I found going for a walk and take a warm shower help. We will continue to explore. Please do not lose faith.

Thanks for your reply. Unfortunately i am allergic to tegratol, the only medication that i am allergic to. Go figure :roll_eyes: i am on a combination of neurontin, trileptol, amitrytaline and topamax. Sorry if those arent the right brand names , im based in ireland. These so far are the best of the worst meds mix for me.

Will never again have a root canal done, ever!! In bed now, pain relief taken, all my daily meds taken, heat pad on my face about to meditate. Still truley grateful that im not in full blown screaming in pain attacks but this constant feeeling of something going tonexplode in my jaw and pressure , little shocks / burning takes its toll after a few months on the mental state. However, ill keep lookingnon the positive side.

Thank you :heavy_heart_exclamation:

Thanks for all the information. Im on the public system here in Ireland. I cant afford to go privately. While or health system is good in some ways we are lacking in others. The neurosurgeon im waiting to see has a waiting list of 2 years, that has been bumbed to 5 years after covid. While when i eventually get there , it’ll be free, if i do have work done , itll be free, i could just happen to be in my late 50’s … im 32 now… if i ever win the lotto i always say the very first thing im doing is heading state side to get my face fixed!!!

Sorry. I didn’t know where you lived. Best wishes for pain relief soon.

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I also take amitriptaline and it does help with the pain. The other drug I’m on are Gamapintine. It’s too bad you are allergic to tegratol bc it’s prescribed to most with TN. I know what you mean the best of the worst…sometimes I feel drunk but not a happy one! I live in the USA and most of us would love to visit your country or rather live there it’s so beautiful. Take care and hope life gets better for you .

Your Friend Donna

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