Hello, I was diagnosed with GPN about two months ago after a very quick exam. I have had pain for well over four years and have seen doctors in a number of different specialties. I do not have a lot of stinging zinging pain. My pain feels more like intense pressure. It's bilateral with the majority of pain on my right side. It is triggered by position (bending over) or walking. I cannot walk more than 200-300 feet without having pain, and the longer I walk, the more pain I have. Walking upstairs triggers it as well. It's worse in the first half of the morning and after 6-7PM. Most often during the day, I can complete standard household chores as long as it doesn't include heavy lifting. The pain may be accompanied by heat and redness of my ear and my neck. it has happened so often that I have a permanent red streak.
Additionally, I have neck and shoulder pain that can occur with the pain above or by itself. It will often hit completely out of the blue, and I cannot stand the pain. I have to stand up and not move. It can take 30 minutes to 2 hours to go away. I'm wondering if there isn't a cervical spine issue that contributes to this.
Do any of you also have issues triggered by specific movements? This is what particular bothers me. It limits me greatly, and we are actually thinking of a wheelchair, although I really don't want to go in that direction.
I do not take any medication. I was given a prescription for one of those Gaba type drugs and had worse pain and terrible side effects. I will say that while I was on steroids for another issue, I had almost no pain.
My triggers were more local, like motion near the base of my tongue, coughing, laughing, sneezing, wiggling my tongue the wrong way, many indirect things like washing my hair, etc.
It drove me crazy and it was ruining my life.
MVD surgery saved me in 2012, and I give my thanks every day.
Thoughts out to you in your trials, hope you get relief.
My pain is of the stabbing type, as well as burning. Most of the time the only thing that causes it is movement of the head or face. Bending forward can hurt. Walking and going down stairs can hurt. Being horizontal hurts, particularly on my left side - my favourite side for sleeping. I seem to be in the minority but sublingual vitamin B12 helped me a lot.
Like Vicdoc, most of my pain is triggered by things with my head and neck, talking, laughing, coughing, sneezing and particularly swallowing. Sometimes turning my head will trigger it as well. Sometimes I will wake from deep sleep in pain. My seems to be seasonal, I have a lot of problems in the fall and early winter. When I have a flare I start on carbamazepine and hydracodone. I have had this for the past 5 years, was finally diagnosed in January 2016 with an MRI. Apparently my fight carotid artery is slightly larger than my left and for some reason in the fall things swell up and I'm in pain. Like you, I have found relief in a steroid, prednisone in my case. The first four years they gave me a 5 day taper. This past fall the neuro gave me a long slower 16 day taper. I generally don't have any side effects from the steroid so I find it to be heaven. I can eat and drink again. I have gone for as long as 9 days without eating a lot, maybe the equivalent of one meal through the course of the day. I do find after a pain attack I'm pain free for about 5 minutes so that is when I try to get in a couple of swallows of water and a bite or two.
Currently I'm off the carbamazepine but the changing weather around here could cause it to start to flare again. Looking forward to spring.
I won't repeat whats in my profile though you may find some useful information there. I judge by your screen name that you teach as do I.
Last July I met with neurologists at Vanderbilt in Nashville (Dr. Ameli/Dr. Brown) who prescribed Trileptal (dispensed as Oxcarbezpin). After a bit of adjustment I ended up at 900mg per day. This dosage reversed the onset of an episode of spasms - the first time that has happened in my nine years of dealing with this. The pharmacology of treatments for this disorder is very individualized but I wanted you to know there is hope. Don't give up and keep trying!
Hi, not sure I have heard of this group of symptoms for GPN. I had no such symptoms so, sorry unable to help. All the best in finding an answer to this affliction
Don't know if this can be of help as my gpn was caused by tuma removal.Mine presents as pressure as if I am being strangled only on my right.with movement or lifting anything even a shoulder bag the pressure increases.I get pain and spasms in the jaw and back of tongue also.currently on pregabalin does not seem to help with the pressure.
Thank you very much for your replies. As I stated, I'm not sure that my diagnosis was correct, since the examination was cursory and very quick. I was not given an opportunity to describe accurately the pain and the triggers. I guess I need to keep looking.
Unfortunately, it seems that movement is a common trigger among people with GPN. For me, just talking or chewing can set off an attack (thankfully that's not all of the time, just a majority). I also have to watch out when I lounge around on a couch or a bed, because resting my head on one side for too long also can trigger an attack. So far, the only real relief I've found for that is to cut a topical Lidocaine patch into small strips & place a piece on my temple/cheek area (one for each side) and put the 3rd piece behind my left ear, directly on top of my MVD surgery scar. Although it's not perfect, it's a lot better than nothing. A heating pad might work as well, but that's something you'd have to experiment with. Can't really put a heating pad in your mouth, now can we?
Sounds like you may have some C-1 issues causing your GPN. I have GPN with classic shocking pain in my ear and under my jaw, but I also get “pressure” too. And body position (bending over, turning my head to the side, bending my neck up or down) as well as wind, and touch, could all trigger it. I didn’t want to do Zombie drugs and figured I should try alternative treatment before having the MVD that my neurosurgeon suggested.
I tried UCC (upper cervical chiropractic) atlas-orthogonal method, and it worked for me! I’ve been pain-free almost 4 years. The compression of my nerve by the PICA artery was noticeable in my MRI. Changing head and neck position changes blood flow and cerebrospinal fluid pressure, and would cause my pain. My UCC doc did digital xrays and analysis to see if my C-1 was misaligned and it was. He realigned my C-1 (the atlas bone) and it allowed the blood flow to change so that it doesn’t pulse against my nerve. It took about 6 months of treatment for me to be able to hold the new, correct alignment, and heal my traumatized nerve. I stay pain-free as long as I stay aligned. I go for monthly checks, and anytime I bump my head.
The book “What Time Tuesday” tells a similar story, about a guy who was ready to commit suicide and then tried UCC and it stopped his pain. Get the book “Striking Back” too, it gives lots of info on this hideous disease and similar conditions. It helped educate me to make better, more-informed, decisions.
By the way, UCC is NOT the same as regular chiropractic…it is much different, and very specialized. The only bone they move is the C-1, and only after sophisticated imagery and analysis.It is very gentle. I would NEVER allow a regular chiropractor to touch my neck.