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
pauline81308 kerensa15341
Posted
Have you tried high doses of vitamin B12? I take 3000mg a day along with Bowen therapy once a week when needed. I've also recommended the NanoVibronix pain shield before. This has excellent reviews and very good back up advice either on line or by telephone.
kerensa15341 pauline81308
Posted
I hadn't even considered it! I haven't been given any information by my doctor on what I should do. My sister has Pernicious Anaemia and requires B12 injections and we've always considered perhaps I have general anaemia due to having coeliac disease- i'll look into it! Thank-you
clint71 kerensa15341
Posted
I would definitely seek additional opinions. Was your MRI focused on the Trigeminal Nerve, or were the images of your entire head? At only 19, if TN is confirmed, you should look into MVD surgery. TN rarely goes away on its own, gets worse over time, and eventually the meds aren't as effective. Recovery from surgery is much faster when you're young, trust me. Lol
kerensa15341 clint71
Posted
To my knowledge, my MRI was a full head scan- but I was never shown the scan, just informed my scan was "normal." I've heard it's very difficult to confirm TN, is that true? I am very much up for any surgery- i'd rather get whatever needs to be done over and done with instead of suffering forever!
clint71 kerensa15341
Posted
lhicks10 kerensa15341
Posted
I got TN a few months before I turned 19 and I'll be 21 in a few months. The first year of having it was made up of people thinking I was making the pain up. The second year (last year) I had finally seen a pain management doctor and he's been trying different medications with me. At the moment I'm taking gabapentin 300mg once a day and obviously that's not enough to work. I haven't tried Tegretol yet but I heard it's better than gabapentin. Has your doctor thought of putting you on lyrica? It could work but maybe not. As someone suggested MVD surgery may be your best bet. You can also look into gamma knife (though said to be less effective in some people). There are other options I'm sure, but you'll probably have to do research and mention it to your doctor.
kerensa15341 lhicks10
Posted
It's good to hear someone was in the same position! I think my doctors plan of action is to work me through a series of TN medications, enough so that she can refer me to a neurologist and they'll actually accept me (they don't tend to through doctor referral unless it's proven a variety of medication was tried) I had the most horrendous side effects on 400mg of Tegretol, but that's down to being very petite! Unfortunately I can't sway my doctor to suggest any surgeries or treatments, in my area it's very set in stone to save money that they'll give you all the medications, and then if none of them had effect, they might consider running tests and treatment.
lhicks10 kerensa15341
Posted
Oh okay. Where are you from if you don't mind me asking. I'm from NYC so things are a bit different. I was referred to pain management by my neurologist(I have chronic back pain). My pain management doctor is pretty much running trial and error lol I feel like an experimental patient. I understand that he's trying to be careful with how much he gives me but I really wish he would just be more realistic, but that could also have to do with him not knowing a whole lot about TN. My mom wants me to see a TN specialist. I need results. I'm a junior in college and looking for a part time job and working will honestly be difficult anyway but I have to do what I have to do.
kerensa15341 lhicks10
Posted
I'm from the UK, so although healthcare is free, the waiting lists are usually 35 weeks long and it takes an awful lot for your doctor to refer you for tests! I feel the same way, i'm in my second year of university and have been basically working this whole year from home because to leave the house for even an hour is unbearable! I also had to quit my part time job- I can only hope the next set of medication resolves something
Jewell kerensa15341
Posted
OMG, Karensa, you've been through so much at such a young age. I'm so sorry. The side effects of Tegretol, for me, are stomach ache (unless I eat first) and a bit of foggy brain, but ok since most people I know have foggy brains, haha (over 70 folks). Maybe a little off balance, but again sort of goes with the age thing. I'm not as quick on the tennis and pickleball courts, which is very frustrating. But, the pain is controlled. And that, my friend, is what it's about. So, give the meds another try. What are your other choices?
Good luck!
Jewell kerensa15341
Posted
kerensa15341 Jewell
Posted
Tegretol gives me a vertigo-like feeling, as if the room is spinning! I've crawled to get food on many occaisons. I'm still on them currently but they're not doing anything and i've been on them for months, I have a doctors appointment Tuesday so i'll probably be taken off them then. I've had an MRI through doctor referral but I think that was just to ensure there were no tumours present!
mallory22442 kerensa15341
Posted
You need to get to an expert TN doctor and Hospital Mayo Cinic Is rated number1 for both docs and nuerosurgery .First I need to know if your MRI showed a blood vessel or artery pressing on your Trigeminal nerve? that is the only way to know if it is TN for sure!!!!! My hospital and Doctor bill was much cheaper than my friend's for rhe surgical proceedure they performed at Mayo and she had her's done in Alabama. I have done so well bcause I went to the right place and it only cost a plane ticket to get there . Another well known Hospital for that surgery is the University Of Pittsburgh ! Good Luck!!!!!
kerensa15341 mallory22442
Posted
Unfortunately i'm in the UK! Which means free healthcare (but you have to wait 40 weeks on a waiting list) My MRI was a general head so I don't think a blood vessel would be visible, although I could be wrong. I'll have to just wait for my doctor to do a referral in order to get anywhere, as i'm a student who can't afford private!
holly35803 kerensa15341
Posted
Hello keresa,
So sorry to hear how frustrating this has been for you. Do I understand correctly that you have been suffering from TN for 6 months but you are being treated by a general practitioner? You are on a waiting list to see a neurologist? That makes my head spin. The symptoms you describe are very familiar to me as a fellow sufferer of TN, but since you have "hit a wall" as you say, I would think you really need a neurologist to confirm a diagnosis. Then either the neurologist or pain management specialist (or both) would be able to help you going forward.
It is all very frustrating. I currently have my pain well controlled with a low level of tegretol. When I read stories from folks here I realize I am currently very lucky.
kerensa15341 holly35803
Posted
Hi Holly, it makes my head spin too! Essentially i've had this pain consistently for 6 months, initially it was suggested I had a nasal polyp causing the pain (?) however 3 months later after much persisting my doctor finally agreed to refer me for an MRI, which showed nothing. She then presumed I had TN, and has been prescribing me a different TN medication each month or so, and says she will only be able to refer me to a neurologist once i've tried a certain number of medication. The reason i'm hitting a wall is although the symptoms of TN are identical to my own (minus my pain is constant and not in attacks) none of the medication i've been given has any effect whatsoever. Except giving me horrendous side effects!