Hello all, first post here. I am a 25 year old male looking for some more answers and information on the condition I am suffering from.

I have had some rather severe pain in my sinus areas for about a year now. I would describe it as a burning, aching, dull pain nearly always on both sides of the area just under the eyes and on the top of the nose. It comes on at different times of the day and stays for hours, sometimes the rest of the day, until I take enough meds to calm it down.

At first it was thought to be a sinus infection but a CT scan was fully clear so I was sent to a neurologist who diagnosed a form of 'Neuralgia', nothing more specific than that. Was advised to take Gabapentin in increasingly higher doses until the pain was controlled to the point I did not need too many opiate painkillers (was taking hideous amounts of tramadol before this which was barely helping!).

The Gabapentin is now up to a fairly high dose and was controlling it fairly well for a couple of months until a few weeks ago when I had a sudden attack of pain one morning and it has been back ever since. So back on the codeine/tramadol regularly now which I was trying to avoid.

I have come across a term called 'Atypical Trigeminal Neuralgia' which would seem to fit somewhat since it is a very constant pain most of the time in the trigeminal nerve area. As well as the constant dull, burning pain I also get sensations that an electric shock is running through my face, there is even visible twitching and shaking when this happens.

So, are there any other signs of this particular condition which would help to firm up the diagnosis? I would think that the effectiveness of Gabapentin confirms the neuro nature of the pain, but I'm trying to get something more specific. Furthermore, what other meds should I ask for with regards to this kind of pain? Lyrica sounds like it might be better.

Thanks in advance for any replies

Have you been to a neurologist? Many of them don't see a lot of these patients, though. So, you might have to try more than one. You likely need an MRI. You can try a tiny bit of capsaicin cream (maybe mix it with some hand cream because it can burn big time) and put it where it hurts most. Acupuncture and warm heating pads help me. Keep reading and try to find a neurologist who is knowledgeable. Also, other patients. I'm sorry that you are experiencing such difficult pain.

Hello,

I am so sorry to hear that you are going though this excruciating pain at such a young age and for such a long time. I know exactly what you are talking about because you have just dicussed my symptoms minus the migraines which I also get weekly as well. You can ask your Dr to look into trying other seizure meds such as Trileptal or Keppra and for the horrible burning try Lrycia instead. Sometimes the doctors do have try different "cocktails" mixage of meds to see what will work for your body.

I wish the best for you because only us that have suffered this can understand.

Kim

The fact that it is bilateral is strange. I think you need a major teaching institution to check you out. The cause would seem to be at the beginning of the nerve (well within the skull). Imaging may be difficult, need the best quality that you can get. Good luck

I hope you can send an update. I have the dx of atypical trigeminal neuralgia and it is very tough.

I take a Desipramine and know many people take Elavil, which is very similar and this helps the pain. I also use a compounded cream with Gapapentin and numbing agents in it as well. Plus, I go to acupuncture several times a week.

Oddly, recently I have also had pain in the sinus area, but my X-ray looks fairly good.

Hope you have been getting help...and again, please update.

I have something similar my doctor says a-typical TN my neurologist disagrees and says its some type of A-typical migraine in my eye, my pain is behind my eye and has been constant for 6 weeks, it's really annoying especially as pain killers don't even touch it and I never get a break from it. I'm going to look into a blockage of the sinus as I refuse to believe that this condition has come from nowhere with no reason