Hi.i’ve suffering for pain and other symptoms for almost 3 years. The very first symptom I had was severe neck pain with breathing problem( felt like I can’t breathe enough air) and then I start having nuerological problems lots of facial pain, bite change ( diagnose of Tmj)…
Now I have symptom of GPN, VN and possibly TN… But also I have lots of neck or skull popping and grating sound…
Does anyone suffering GPN ( or suffered) have this??
I had massage therapy before and he said it’s because of tight muscle…
I was also told from prolotherapist that I have neck instability causing sympathetic nerve pressure, this is called barre- lieou syndrome.
Maybe I have everything or I don’t know… But I’m so tired of pain everyday…
Yup! My neck, throat, and jaw. And you do get that popping, although I have not seen that in the literature. Watch out if you have had chickenpox and get herpes in your mouth/face. That brings it on too. GN......it's a lifestyle. We deal with it like everything else.
I’m adding… The neurosurgeon I saw last week saw nothing in my spine MRI.
But according to the prolotherapist ( dr Hauser … he’s in you tube) neck instability can’t be seen in most of MRI.
Well… I guess it’s true. MRI can’t show many things…
It would be nice to know two things: (a) what training has your prolotherapist had in neurology, and (b) what did he mean by "neck instability"? Is he suggesting that the bones and discs in your neck spontaneously move out of alignment, causing your GN pain? That sounds like the approach a chiropractor might take, and from what I've read in medical literature for most of 20 years, it's totally bogus.
Thank you for replying.
I don’t know if he has any training in neurology. For my understanding, prolotherapy is used to regain ligament stability or strength.
Barre Lieou syndrome is the condition that neck ligament get loose and pinch sympathetic nerve and cause lots of problems.
I know it is a condition, but I don’t know it fits me although I have many symptoms on the list of the syndromes.
Another thing is that I’ve been testing for Lyme desease. I don’t think it can cause the pain of tongue and throat, but at this point, I would do any test…
Yes, I too have neck, throat and jaw pain. I also had a severe whip lash injury 3 years ago which has definitely caused increased neck issues/pain, also get a lot of popping and crunching when I move my neck. Massage therapy does help some, muscle relaxer and I do a lot of stretching and hot yoga which helps the most. I can’t leave out I use a lot of ice and heat, I alternate ice 10 min, heat 15min, then ice again for 10min. Keep your head up and I hope some of this can help you. Keep pushing your medical providers for more answers/options.
Take care, Erica
Everything you mention I struggle with. You are right, neck cracking really isn't mentioned anywhere. Right now I am checking on Lymes myself. I found out I tested positive a long time ago and it could be the cause of all my problems. Lyme can cause cranial nerve pain Chizy. It can also cause all kinds of other horrible things.
I have GPN, GN, TN, palatal myoclonus (involuntary tremor of the palate), diagnosed with Eagles Syndrome, possible Lyme, misdiagnosed with acid reflux and TMJ. I have crazy neck cracking all the time, pressure in back of my head, tightness in my neck, on and off chronic dry cough. Clearly, my problems are neurological and think Lyme could be the culprit. Anyone else with Lyme think their GPN was caused by a tick borne infection?
Christian22, are you taking Ramipril for high bp by and chance? I had the dry cough, very badly for several months, until my son in law (trained generalist and cardio/thoracic Dr) recognised it. I went back to my pracitioner and he changed it for an alternative and the cough disappeared within 1 week. It caused havoc with the gpn, triggering bad spasms.
Christian22 said:
Everything you mention I struggle with. You are right, neck cracking really isn't mentioned anywhere. Right now I am checking on Lymes myself. I found out I tested positive a long time ago and it could be the cause of all my problems. Lyme can cause cranial nerve pain Chizy. It can also cause all kinds of other horrible things.
I have GPN, GN, TN, palatal myoclonus (involuntary tremor of the palate), diagnosed with Eagles Syndrome, possible Lyme, misdiagnosed with acid reflux and TMJ. I have crazy neck cracking all the time, pressure in back of my head, tightness in my neck, on and off chronic dry cough. Clearly, my problems are neurological and think Lyme could be the culprit. Anyone else with Lyme think their GPN was caused by a tick borne infection?
katyB, no I don't take anything for high BP. Right now I am just on nortriptiline. I wish I knew what caused the cough. I am sure it is the glosso and vagus nerves. I also feel like I'm wheezing. It comes and goes. I have bad allergies but it comes in the winter too. I feel like I'm dying sometimes with all these issues.
I’m sad and glad at the same time to know someone has very similar problems.
I feel the same way… One time Tmj doctor asked me " what do you think it will happen if untreated?" I said " I think I’m dying" and he laughed. But I was serious, and you know what I mean.
I’m taking gabapentin 300mg 2,3 times a day and occasionally Valium ( muscle relaxer)
They don’t work too much other than making me sleepy and drowsy.
I still need to go take another blood test for Lyme. I’ll keep posted!
Have you tried any medication such as Tegretol? Cymbalta? Maybe a combination? That's what works the best for me, being a GN diagnosis.. Hope you have some luck soon..
No I haven’t tried them yet. I saw 5 nuerologists. 2 of them prescribed me gapapentin. 3 didn’t do anything.
I just saw a neurosurgeon last week and orderd MRI fiesta. I could ask him about medication maybe…
Did they help you??
Another question is… Do they help for VN too??
Well, I am not sure if these specific meds help VN as well, but my Neurologist who happens to be very well respected within his field, told me that Tegretol was the best for this type of pain. It has helped me a great deal from the very beginning but unfortunately I continued to have flare ups and so subsequently we added Cymbalta.. The two have been a great fit for me but everyone is different. I would definitely talk to the Neurosurgeon but he will probably refer you to your primary Neurologist for any of your prescription medicine needs. Just an FYI, I was diagnosed by MRI, MRA, and CT scan. Let me know if you have any other questions.
Thank you Blackhawkflowergirl.
One more question, you were diagnosed by MRI, MRA( I’m not familiar with MRA), and CT. That means they showed blood vessel or artery compressing nerves?
I had MRI and CT 2years ago, but they came back normal.
I just found out that I have Lyme. After 3 years, finally I got a clear diagnose.
I’ll still see a neurosurgeon for MRI follow up next week…
But I believe my pain and all the problems are related to Lyme.
I started treatment with oral medicine, and I’ve been feeling not well… The tightness of throat and back of tongue are really bad and my body feels so heavy…
Did you figure out if you have Lyme??
Christian22 said:
Everything you mention I struggle with. You are right, neck cracking really isn't mentioned anywhere. Right now I am checking on Lymes myself. I found out I tested positive a long time ago and it could be the cause of all my problems. Lyme can cause cranial nerve pain Chizy. It can also cause all kinds of other horrible things.
I have GPN, GN, TN, palatal myoclonus (involuntary tremor of the palate), diagnosed with Eagles Syndrome, possible Lyme, misdiagnosed with acid reflux and TMJ. I have crazy neck cracking all the time, pressure in back of my head, tightness in my neck, on and off chronic dry cough. Clearly, my problems are neurological and think Lyme could be the culprit. Anyone else with Lyme think their GPN was caused by a tick borne infection?
Christian 22.
Did you check your Lyme yet?
After that , I found out I have Lyme myself… You are right about that it can cause lots of problems including GPN and vagus nerve problem…
I’m in antibiotic treatment… But still have lots of GPN pain and facial pain…
Christian22 said:
Everything you mention I struggle with. You are right, neck cracking really isn’t mentioned anywhere. Right now I am checking on Lymes myself. I found out I tested positive a long time ago and it could be the cause of all my problems. Lyme can cause cranial nerve pain Chizy. It can also cause all kinds of other horrible things.
I have GPN, GN, TN, palatal myoclonus (involuntary tremor of the palate), diagnosed with Eagles Syndrome, possible Lyme, misdiagnosed with acid reflux and TMJ. I have crazy neck cracking all the time, pressure in back of my head, tightness in my neck, on and off chronic dry cough. Clearly, my problems are neurological and think Lyme could be the culprit. Anyone else with Lyme think their GPN was caused by a tick borne infection?
Somehow I just saw this message. I was just diagnosed with Lyme, but have had it likely since 1999. How did your antibiotic treatment go? They want me to start it now, however, I have MVD scheduled for December so I don't know what the do.