Hello all, I joined up here yesterday hoping to find out some more about this condition. I am going to briefly describe my pain below and was going to see if any here recognize it as TN. I am pretty sure that's what it is.
It began as a fairly constant, burning pain in one or both areas just under the eyes at the top of the nose which comes on at some point in the day then stays until I take enough meds to calm it down. It first started early last year and was thought to be sinusitis but since a scan was clear they sent me to a neurologist who diagnosed it as an 'atypical facial pain syndrome with neuralgia type pain bilaterally'' which is pretty vague and to take higher doses of Gabapentin until it calms down (it never has, only got worse)
Anyway, since tramadol even in super high doses did pretty much nothing for the pain on its own, I was first given Amitriptyline which worked a little bit. Was then put on the lifesaver Gabapentin, started at a low does but have gone all the way up to 600mg 3x daily and this REALLY worked, for a few months at least.
Recently over the past few months I have also had more and more sudden attacks of pain, like there will be a tingling sensation the sinus area, then a sudden shock goes through it along with an often very intense involuntary muscle spasm for a few seconds. The more constant pain is also getting worse and a combo of Amitriptyline, Tramadol and Gabapentin is not touching it at times despite leaving me rather out of it.
I dismissed TN at first since I thought it was only very short shocks of pain but having read about the type 2 / atypical one that would seem to fit quite well.
Are there any other particular signs or features that I am unaware of with this disease?
Hi Unsure,
Sorry you have to go through that kind of pain, but this is a great place for support and information. I have Bilateral atypical TN, which translates as, I have both a constant burning pain in my scalp, sensation of pressure in my face, along with the shocks of pain. I take 600 mg of Gabapentin 4x a day, an while it has helped a lot with the shocks, it does not take away the constant burning, just makes a little more tolerable. It does sound as if this could be what you are experiencing. Have you ever been prescribed Tegretol? This drug works very well on TN pain. I had great results from it, but unfortunately am allergic. Perhaps that could be something for you to try .
I have type 2 pain and anti sez meds i had an adverse reaction with I am on a similar med to amitripyline but didn't get decent relief til i hit 75 mg I hope you find relief soon
What you have described there does sound very similar to what I have experienced. I have also had a feeling of pressure in the face a great deal of the time, hence the original diagnosis of sinusitis. The shocks of pain were not present much to begin with though, that has come on strongly over the past 3-4 months.
Interesting that you take Gabapentin 4 times a day, I only take it 3 times and its great when it kicks in but it doesn't seem to last long enough, so I will try stepping up to 4 times.
jstagrl29: funnily enough I had a bad reaction to Amitriptyline back when I took only that, stepped up to 30mg per night and after a few weeks it sent me loopy with loads of anxiety and manic phases. So I dare not take more than 10mg now, does help though. Thankfully I seem to tolerate the Gabapentin well.
Am going to get back to the neurologist soon to get a more firm diagnosis, will have to wait months for an appointment though. It is good that I have found a place of support for this, no one in day-to-day life really understands it. Seems a pretty active forum too. Thanks for all the well wishes.
There is a spectrum of facial pain problems with this little community of ours! A few different versions, we are same but we are different in our pain.
Go to google images -- put in "trigeminal neuralgia" or neuralgia facial pain -- it's a little scary
There is hope in a prescription that is in 3 different forms and can instantly bring pain relief!!!
Lidocaine Patches/cream for putting on face
Lidocaine Mouthwash for pain in mouth
Lidocaine nasal spray
Should be able to call your primary or neuro and have them call it in for you - no need for office visit for that--
Lidocaine sounds interesting, I'll look into that and Tegretol that was mentioned earlier. The problem I have is that the general doctors have no idea about this (to be fair it is a pretty specialized field of neurology) and some don't really believe me too, asking if I'm 'stressed at work' hah. So I need to see the neurologist again to get any meaningful treatment
Massive attack this morning while at work, luckily I am in a position where I can take breaks when I like and have no one watching what I'm doing so it fits in well with an unpredictable condition like this. Familiar thing now, starts with a tingling sensation in the face, followed by a deep sense of uneasiness. Then the first muscle spasm starts, a sudden twitch of the face, followed by a few more where the face shakes for a while and the feeling of a rushing, flowing sensation through the sinus areas. Then it settles in to excruciating burning pain. Have took 100mg of tramadol to hopefully abort the worst of it (thankfully this drug seems to work combined with the gabapentin etc)
Right that does it, am looking up private neurologists right now and am going to get an appointment ASAP regardless of cost. Unbearable muscle spams on the way home, I nearly feinted at the train station. Am completely zombified from max dose of all meds too, can barely remember my own name, yet it is excruciating still! :(