Update on my TN. (Can be misdiagnosed)
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Hello friends. I am male and 28 years -old. It can be a long writing sorry for that. If anyone have same symptoms please read.
1 year ago when i randomly go dentist to little tooth decay and normal controls like whitening etc. Just standard procedure. Anyway after my basic tooth filling work 3-4 days after i feel extreme pain on my tooth and x ray shows nothing wrong my teeth(Upper left back teeth) i and my jaw surgeon(dentist) decided to make root canal because i was really panic and the pain was the worst. i said just do that or i went blackout because of pain. Then after operation my teeth seems good and just a little pressure pain on it.(still in progress but not really much.)
1 weeks after i have burning on my left cheek which is maxillary region and i had burning tongue tip very boring type. I google it and I used a b-complex for my burning pain and it seemed a good for me my burning sensation gone 75 %. ( Still in progress.)
After 2 days my dentist called my and advice to check my sinus i went ENT and everythink seems OK.
month: My burning pain change shaped and makes more ache then burning. Not extreme but dull and continuous. In the meantime, MY PAIN STILL ALWAYS CONTINUOUS.
month: I went a neurologist and makes some tests and normal brain MRI just a little left trigeminal nerve and artery closest not a touch. She said it is not a trigeminal neuralgia just wait and see what happens and also gave me Neurontin(1x300mg) but i did not use it because of side effects.
3.month : My dull ache pain really gone bad when i was on cold weather. Really sucks. I also have a weird symptom which my left back of my tongue pains when i touch it or swallowing. Like a tongue wound. I also had a little earache. Gone again Ent everything normal again.
4.month: I went a brain surgeon give me a lyrica(2x25 a day) and another neurologist which is good at this cranial nerve issues. All them said that it is not a typical neuralgia maybe atypical because of tongue pain and continuous pain.
5.month: I decided to take lyrica because of my tongue ache pain and tingling root of my tongue. Tingling also cause sometimes coughing. Lyrica not seem working for my tongue pain. For face burning and ache its really good but not for my tongue still same.
6.month: Okay my tongue prickling pain gone back more now and much more pain when i pressure on it. Like something stuck of my back tongue. Also i can't really reach of my pain zone because pain gone really back of my tongue. When i tried to touch it i feel nauseated and gag. In meantime i gone my neuro again and my lyrica dosage increased(2x75).
7.month: Lyrica did not work really okay i can't say worthless it is really cut my face pain. I could walked on 1 degree and not pain at all. But my f..king tongue pressure and pain feeling not gone.
8.month: Okay problems started after there; for 3 months i have really trouble to eat. I can't swallow thinks like water or meal. It's okay specially after evening i can eat. But until the evening i can't eat. I give 7 kilos in 2-3 months. My tongue problems gone interestingly. I feel my problems traveling my cranial nerves.
I went my neurologist again and made a brain mri with contrast. Nothing seems a abnormal just a artery touch on my trigeminal nerve. My neurologist really can't do anything. Maybe Glossopharyngeal nerve problems she suspected but not sure.
She send me a rheumatologist and made some tests. My ANA comes really high positive. But all other tests come negative. He thinks it can be a mix connective tissue disease. Not give me to a medicine just continue to take lyrica. Also he can't explain swallowing problems and MCTD. Just say come after 4 months and see your ANA score again.
I am really tired to can't find my problems.I try to sum up but i saw about 10 neurologist, 3 brain surgeon, 2 Ent,1 Endo and 1 Rheumatologist.
No one said okay it's your problem just test all clear and maybe this maybe maybe.... I just want a clear diagnosis not much. Lyrica,Cymbalta,Neurontin,Tegretol all in my drawer. Just use Lyrica for now. 2x75mg still.
My last neurologist said that you should use Tegretol but i just can't quit lyrica because my mode gone really down when quit it.
Should i give a change to Tegretol for my tongue and swallowing problems. What do you think guys?
Anyone have same symptoms like swallowing problems not pain just can't swallowing. I don't know my problems really traveling in my body. Anyone have like my problems i am really be grateful to talk to him/her.
Thanks for reading.
0 likes, 2 replies
H0C Ozie
Posted
Try highly-concentrated CBD oil/tincture/capsules; take with Bioperine (black pepper extract) supplement for better absorption, but only about every other day. For me, smoking CBD (hemp flower is most effective, especially when my pain acutely spikes. Have been living with TN for about 6 years now, and hemp has been a godsend.
With all of that said, don't take my word for it, do your own diligence to make sure you understand the therapy. Ask your doctor(s) about anything you want to be clarified and/or blessed.
Kacee01 H0C
Posted
Hoc, I was on oxcarbazepine for 5 yrs, was causing side effects, really bad stuff but with electric shocks in left side of tongue and constant burning, couldn't eat. My son had a client that had taken cbd oil under tongue, so he purchased mine supposed to be the best and after about 3 wks. I could see a difference. In shocks and pain, it has worked for 1 yr and 2 mo. Also I noticed wifi causing shocks, When my office changed from wired to wifi, I started having the burning and shocks return, so now my question is, how to take black pepper extract??? With the sublinguel cbd. I would recommend to anyone , oxcarbazepine if you can take, it saved my life for 5 yrs. Anyone with trigeminal should get the book Striking Back, a handbook for trigeminal, , you will understand the awful pain and why. Be Blessed.