Hi there, apologies if this overlaps with previous posts. I’m hoping someone can tell me whether this sounds like their impression of what Atypical glossopharyngeal nNuralgia / GPN is:
no real “stabbing” pains (so far, thank goodness)
3.5 months of constant pain on the left side: base of tongue, and along the length of the tongue; constant but wavering between 1/10 to 6.5/10 over the span of hours (usually around 3.5); never fully gone
in recent weeks, pain deep in left ear
more recently, strange feelings around left eye and under jaw; vague discomfort, sometimes very very mild zipping feelings on various parts of my face including under jaw (both sides) but not at all stabbing; seems more noticeable when I’m worried; one slightly more intense zip under chin today
resurgence of an old pain above top left molars (had this several times over the years), steady for many hours and sometimes rising to quite intense level, sometimes coinciding with deep ear pain
occasionally, tingling/mild cutting feeling all over tongue (consistent with “burning tongue syndrome” descriptions)
I’m finding slightly different reports on what atypical GPN looks like. I’m quite frightened that this will escalate while I’m waiting to see a neurologist, and my family doctor seems very reluctant to prescribe anything. I’m terrified too of having to leave work. Does anyone have any tips at all? And any suggestions on what kind of meds I can ask my doctor for, while I wait to see a specialist?
Hi Canada2018 - Atypical is a term for something that seems like X but doesn’t really act the same way as X. So by definition, it doesn’t act the way that most doctors would expect, yet there’s something that makes them think it involves that nerve or set of nerves.
Having a neuralgia that doesn’t act typically, is something I know. The most important part is that you find a doctor that is curious enough and patient enough to walk through common and uncommon treatments together with you. You are looking for a personality type perhaps even more so that a certain medical specialty. For instance, I’ve had an allergist who was more curious and supportive than a neurologist, and I don’t even have allergies it was just something I was trying to rule out. This allergist told me that I was worth finding the solution, no matter what it was or how long it took. The same is true for you. Sometimes we find it right away, but more often than not it takes a while of trial and error and combining the best aspects of different treatments together to get somewhere near pain relief or remission.
I know I’m not able to provide anything that’s a real solution, but I do hope that this encourages you. For what it’s worth, I’ve found that pain management doctors are some of the best, because they know that it might not be as simple as writing one prescription and done.
Thank you so much, HiDawn. This is very helpful, and also very positive – thanks for this inspiring outlook on how to approach solutions. I will keep this advice in mind. Wishing you a happy weekend!
_ found out I had ATN in 2009 I had MVD in 2012 at Duke. I still have teeth, and other various ATN pain. About a year ago I started having throat and tongue pain , it felt like my tongue had been cut with razor blades and burned with torch. I kept getting choked when trying to swallow. This comes and goes sometimes unbearable. The pain clinic nor my Doctor can give diagnosis. In fact my doctor ask if I would consider seeing a physchiatrist(sic) I said no the pain was my problem Iwish there were doctors to be found that and I would find my own way to cope… _
Oh my goodness, Judith, you need some new treatment options fast. Are you currently taking medications? Perhaps you can post a new topic in the forums, asking for advice on different medications you can try, even if you can’t get a new diagnosis? Also, maybe the doctor suggested a psychiatrist only because it might help to work on some pain coping strategies – maybe it’s worth a try. I send you warm wishes for quick new solutions. You’ll find them!
Hi Canada2018,
I live on the east coast of South Africa and was diagnosed with Atypical GPN in 2013, but had been experiencing earache and pain in my jaw periodically since 2005. To that end, I went through every medication just about on the planet from paid meds to psyche meds and a whole lot of neurological stuff in between, but nothing helped to take the pain away ( a deep searing pain in my right ear as if somebody was pushing a knitting needle through my brain… it also affected my eye socket and jaw which ached a lot even though my teeth were all fine as was my eyesight with no apparent cause for the ache and sharp stabbing pain … then I began having difficulty swallowing and a kind of spasm or cramp in my neck … ) or to alleviate the symptoms for long … I did however discover a whole new personality which was both maudlin and passive to the point of not giving a fig … I am neither of these things, never have been one to allow anything to hold me back, I’m an all or nothing perfectionist and hugely passionate about my work and family.
It was not until I had an MRI in April 2013 that the ENT specialist referred me to a Neurologist with Atypical GPN … since then I’ve had two MVD surgeries and whilst I had some relief, both times the pain returned after 8 months … not quite with the same intensity, but it’s still that deep sharp ear pain and it’s still debilitating… currently I merely manage the pain with a slow release anti inflammatory which I take every 12 hours and regular schedule 5 pain tablets only available on script which I take (sometimes as many as 6 a day) when the pain is bad … 8/10 and over
My condition is complicated by not only having GPN, but I have compressions on both the Vagus nerve and the Nervus Intermedius as well … so three nerves of the Trigeminal/Cervical nerve complex are affected … the latest MVD in March last year was to “slingshot” the artery by attaching it to the lining of my brain and thus drawing it away from the areas of compression … in fact the Vagus and Nervus Intermedius were bent double and forced back on themselves by the artery … the neurosurgeon elected to write a paper on it because he had only seen it once before in almost 50 years of practice, and that patient died from a brain haemorrage.
I am absolutely fine after the two brain surgeries … yes, I still have pain, but it’s manageable and not the same relentless neverending nightmare that I had to live through before the surgeries … and, yes, I have had to give up my professional practice of 25 years because I no longer have the stamina to work till all hours to meet deadlines, nor do I have the confidence in my abilities as I have large “gaps” in my professional and experiential knowledge … but I am still alive and kicking, still here to love my family and spend time with friends, and still here to be the best I can be within the new limitations imposed as a result of two brain surgeries … that maudlin and negative “drugged” zombie/stranger is gone, and I’m very much the person I used to be without all the professional capabilities and attitude … a good thing!
I have atypical TN. Instead of electric shocks I experience a deep throbbing pain. It feels like a hot poker is being pushed into my face. I was diagnosed about 22 years ago but for the first time in recent weeks I had some electrical shocks. It happened two times when I bent over. Awful. I can go months without pain but several weeks ago I started having brief episodes on the right side. The pain increased this week until yesterday when it was nearly unbearable. It was the worst pain I’ve felt in years. I normally take 200 mg of Lamictal twice a day along with 300 mg of Gabapentin. Yesterday and today I’ve added another 200 mg Lamictal, 300 Gabapentin and 10 mg Baclofen. It helps in that it knocks me out and there is no pain when I sleep. Although the pain is a little less today, there is one tooth that is throbbing horribly. I tell you all this to illustrate that none of my episodes are the same and I never know what to expect.