Has anyone in the group been told that Lyme disease , or post-herpetic ( Shingles) neuralgia was the origin of their pain ? Was anyone else given Small pox vaccines for a 6 week period in their youth to treat " fever blisters " ?
( It was an unusual treatment used by some Docs in the 1970s. . If you search there is a JAMA letter to the editor rec. that doctors stop the practice b/c of the risk of Vaccinia .) Not everyone has a blood vessel impinging on a nerve as a cause for their pain . I am curious as to what others have been told beyond the standard idea of the nerve and blood vessel theory . FM
I have had GPN for the past 5 years, managed to pain free by Lyrica and topomax for about 4 years; and then I had been in remission with no drugs for 6 months. Then, because I'm 67, I had a shingles vaccination. Within a week, my GPN came roaring back -- not as bad or as long as the initial bout with it, but still scary. It took about two months to return to symptom free with medication, which I now continue to take for fear of another rough round. Though my doctor doesn't concur, I'm firmly convinced that the "live" virus vacination caused the recurrence. On and off my whole life, I have had fever blisters, but have never received medical treatment for them; just used over-the-counter type aids. Never thought about that connection.
Several doctors I see think that there may be a connection between my pain and Shingles OR that the anti-viral med at high dose has pain relieving properties . I cannot stop Valtrex ( an anti-viral ) without a flare and occ worsening of symptoms . I have tried to stop the medication several times and when I do bad things happen.
Interesting. I have second guessed myself a dozen times re getting the shingles vaccination and wondering if I would still be in remission if I hadn't. But I guess if I hadn't and had gotten shingles that and whatever meds I would have had to take for shingles could have made the GNP far worse. I figured with having had fever blisters on and off, I was probably somebody who would be susceptible to shingles. As always with this disease, there's no telling.
I was diagnosed with Lyme from a lab called Igenex. I have no idea if my pain is from Lyme or not? I am basically feeling well except for the nerve pain in my ear~ throat. I guess the only way to know is go ahead with a MVD and see if there is a compression.. If Not, my next thought would be to try some antibiotics to treat Lyme. Some people may prefer to do it the other way around. I have mixed feeling about what to do.
Thank you for sharing your comments which have helped me deal with my "uncommon symptoms" which I have had for 6 years, maybe longer. The dull ache in the throat, and inside my right ear has now spread to the right side of my face and head. Most of the time the pain is very dull and not disabling, but the problem is constant. When I get sick with the flu, the throat, head and ear pain gets worse. The comment from one of you on this blog, mentioned the anti viral medication "Valtrex" and how it had a possible helpful influence. I have also been helped by Valtrex. I wonder if there is a way to rule out on going viruses, like the herpes virus which may only be managed, not cured. Has any heard about viruses causing GPN symptoms?
I often have intense pain in my Eustachian tube when I have facial nerve pain flares . As I have mentioned before I have found EMLA is very helpful for the ear pain that occurs but that is just the outer ear and not the eustachian tube pain .Testing for the herpes family of germs is not very specific per an Infectious disease doctor I saw at Duke . Labcorp told me the " titres" they do are not true titres but a number created using their control for that day .