19 years old with Trigeminal Neuralgia?
Posted , 10 users are following.
Hello,
I've been through 6 months of hell with agonising, daily left sided jaw, ear, eye, and general face pain, i've had CT scans, MRIs, eye tests (and am booked in for a x-ray of my teeth in February.) My doctor is absolutely stumped as i've tried Amitriptyline, Propranolol, and Tegretol, to no avail. Dosage doesn't seem to be the problem as i'm a very petite 5"2 lady and I definitely feel the side effects of all these medications strongly.
I've hit a bit of a wall now as there seems to be no diagnosis that can be given /ie whether I do actually have neuralgia or if it is something completely different. It isn't migraines as i've had migraines since I was a child and those are manageable in comparison to the pain I feel now.
Any suggestion or tips would be really appreciated, as i'm absolutely desperate and would love to be able to leave the house again!
0 likes, 26 replies
kerensa15341
Posted
Update: i've now been prescribed Gabapentin (starting off on 900mg a day) and now it's just really a waiting game to see if a neurologist will decide my case is solid enough to proceed with seeing me. Does anyone have any tips for lessening the intense pain? Extra strength ibuprofen does absolutely nothing for me.
clint71 kerensa15341
Posted
When I had TN, all I could really do is take my carbamazepine religiously, and move my mouth/face as little as possible. Try to avoid sleeping on the side of your face that hurts. I never really had "attacks" either. Without meds, my pain would've been constant.
It's really no way to live. I hope you get a diagnosis, and look into more permanent treatment options if it's TN.
kerensa15341 clint71
Posted
I'm still trying to find a medication that has any effect on the pain! Carbamazepine did absolutely nothing for me. Upon mentioning the idea of surgery my doctor said she wouldn't suggest it herself as the problems are hard to find and harder to fix, so she wants me to be treated with medication... I just hope a neurologist will accept me and suggest it themselves!
clint71 kerensa15341
Posted
I'm in the USA, so our healthcare system is completely different...not necessarily better, but different. Can you insist on seeing a neurologist, or are you out of luck if they refuse to accept you?
kerensa15341 clint71
Posted
To my knowledge it's almost impossible to see a neurologist without going privately and having to pay (i'm a poor student!) and you have to be referred- but fortuntely today I recieved a call saying i've been accepted for an appointment with a neurologist! Isn't until April but I expected a longer wait so i'm happy. Now to just start on Gabapentin and hope it does something for the pain until then.
clint71 kerensa15341
Posted
Cerimartine kerensa15341
Posted
Hi there, I am 19 years old and have had trigeminal neuralgia for five years now. I've had no proper diagnostic and am on no medication. But the doctors just keep mugging me off, mines on the right side and is so painful I can't move sometimes. I tend to use hot water bottles when its really bad
isabelle54481 kerensa15341
Posted
Hi,
I came to this thread after googling the exact same symptoms that I have been suffering from for 6 months now. I have also read your other threads about your issues with heart rate slowing down and fainting, fever etc and I have had all of those symtoms too (amongst many others)! After seeing many many doctors and doing every kind of test out there, including MRI and EKG, I finally just found out that I have mononucleosis! Very relieved to have this diagnosis and finding other mono sufferers that seem to report the same kind of issues. While a lot of my symptoms are slowly fading away, this jaw/ear/eye pain persists and I haven't found anyone else reporting this typ of pain with mono... Sometimes I have also gotten blurry vision on my left eye when the pain gets especially intense and I am kind of scared this is something permanent since it has been going on for 6 months. Did you ever get a diagnosis and how is your facial pain now?
kerensa15341 isabelle54481
Posted
Hello!
In regards to this thread & my suspected Trigeminal Neuralgia, about a year ago I was finally diagnosed by a neurologist as having Chronic Paroxysmal Hemicrania. A couple of months later the heart issues started, and i'm now seeing a cardiologist for what is presumed Postural Orthostatic Tachycardia Syndrome (it's as fun as it sounds.) I've heard of a LOT of people with similar symptoms to me having Mono, and if I don't get a confirmed diagnosis of POTS i'm planning to suggest testing for Mono. I'm sorry to hear you're still struggling even though you've been diagnosed! I've heard head acupuncture alleviates pain for some people, if you haven't already tried that. Thank-you so much for your concern!
Myworldimage kerensa15341
Posted