Has anyone had a definitive diagnosis that an infection is the cause of their GPN?
A viral DNA test was positive at the Spenopalatine ganglion for Zoster. I have ocular pain as well as pain in my mandible, maxilla, ear and oropharynx .
I have GPN and my diagnosis is that the viral infection HSV-1 is the cause. I also have on and tn HSV-1 infection of the eye on my TN side.
Though this was never accepted by the doctors or proven, my GPN suddenly reared its ugly head after I'd been singing extremely loudly to my favourite album (All Killer no Filler). It was only three years later that a consultant listened to me and agreed that it may have brought it on through damaging the nerve.
Interestingly, in the last couple of years, I've noticed a link with my left ear becoming blocked and the onset of attacks. Even more interestingly, when the ailment is at it's worst and I'm getting the attacks, pulling at my left ear lobe stops it!
I'm convinced that there's a link between a build up of wax or something else hidden in my ear and the GPN. Anyone else had anything like this?
I know herpes; cold sores can bring it on. You can take Lysine to keep them away.
Funtsie
The doctor said I was born with the nerves being compressed, however I also tested postitive for Lyme's disease.
This all started out as a typical bacterial or viral raw sore throat.
The symptoms changed over time but have been consistent for the past 1-1/2 yrs.
The raw feeling has been gone for the past 1-1/2 yrs.
I saw 7 ENT's before I figured out on my own the problem was nerve related.
I have had several CT & MRI's but no 3d scans.
Current symptoms are:
Sharp knife like pain that starts in my mouth under my tongue traveling to my ear then down my neck passing very near the adams apple to almost my voice box.
I have no feeling to hot or cold on that side of my throat.
It also feels like my neck muscles on that side do not work when I cough or attempt to clear my throat.
I have bouts of hoarseness, cough attacks, nausea, trouble swallowing, the feeling my neck muscles are constricting..
Some foods seem to trigger more intense pain.
Unexplained weight loss.
Lost 50lbs but have regained 15lbs
Herb- you're speaking my story!!!!!!!!!
Anymore info on anything??? Have they found out the cause or anything?
Keep me updated please!!!!!
Lysine is an old wifes tale if u suspect that any of the HSV viruses are in deed the cause get a blood test and if u test positive then have the doc put u on Valtrex or acyclovir.
Funtsie said:
I know herpes; cold sores can bring it on. You can take Lysine to keep them away.
Funtsie
Hmm.......I will let my physician and pharmacist know.
:)
Funtsie
So I could have HSV and that has caused GPN?
Does that mean if I take lysine everyday, I won't have pain?
Does that mean I wouldn't need MVD?
This is all making sense now. As a kid I got mouth sores ALL the time and I always had to take lysine.
What do they do to treat this other than meds????
THANK YOU
lkeil said:
Lysine is an old wifes tale if u suspect that any of the HSV viruses are in deed the cause get a blood test and if u test positive then have the doc put u on Valtrex or acyclovir.
Funtsie said:I know herpes; cold sores can bring it on. You can take Lysine to keep them away.
Funtsie
THANK YOU EVERYONE!
Could it be possible I don't even have GPN though?
lysine does NOT work I have been disabled with TN, ON and GPN from cold sores for 15 years and lysine doesnt work....U NEED VALTREX OR ACYCLOVIR! first get a blood test....
Ok I’m going to dr tomorrow. Thank you
My pain began after two sinus infections with unusual pathogens occurred back to back .I lost the hearing in my left ear . The ENT said I needed to be on steroids before the loss became permanent . The hearing returned after taking the steroids. Soon after I was in church one night and developed the worse dental pain of my life . By the time I got home I had an irrational desire to throw myself out of the window to escape the pain in my mandible . I went back to the ENT and he said I had GPN. At first the episodes were episodic and then continuous . They were in my ear, maxilla and mandible ( jaw bone ). Later on I developed pain in my eye and we proved it was Shingles using a DNA test . The ENT rec. I take Lysine and avoid arginine containing foods like chocolate and nuts to help the horrific eye pain . I thought it was silly but became a believer after trying the Lysine . It helped the eye pain …eating nuts made it recur ….so --so long peanut butter .This is in addition to taking an anti-viral like Famvir. The anti-viral alone did not stop the pain. The Lysine just HELPED lessen it. Look up the People's Pharmacy .They are on NPR and I believe one member is from Duke. They are a good source for looking into " home remedies " that help some people . We are not all the same biologically so it makes sense that not all meds --or remedies help all people. For me it takes more than the usual dose of an anti-viral to get any benefit at all .
Neurologist told me that there is no way to know what caused mine. Mine started with a screaming swollen raw sore throat. Two days later weird scalp tingles, jaw pain and constant ear pain. Pain is different now, but I'm on meds. Neurologist suspected Post Herpetic Shingles caused the nerve damage to the nerve. She said shingles can sometimes occur solely internally. Or she said it could be another virus all together. Truth is there aren't enough of us GPN folks around to have much case study research done. Often after a virus finishes doing damage, it leaves little to no footprint making the epidemiology hard. Anti-viral medication often has no benefit unless administered in a short window. It's why Tamiflu isn't prescribed unless your just starting to suffer from the flu virus. So maybe some of us had a weaker nerve sheathing in spots, others got nasty, nasty viruses, others something else all together.