New with Glossopharyngeal Neuralgia, lyme, reactivated ebv

Hi everyone,
I joined a month ago during a horrendous GPN flare. Now, Im posting during a time of remission and more clarity! Sorry if this may be duplicate for some of you - I think I might have posted this earlier as a blog entry by accident.

Long story short, I am a 46 yr old female and have late stage Lyme and reactivated epstein barr virus. It has caused a lot of head neuralgia type issues. The latest has been treacherous left sided throat issues- burning throat, feeling like my tongue being pulled down my throat, feeling like someone strangling me, tonsil pain, some ear pain, lip burning, teeth aches, etc.

Anyway, to my surprise, after a long overdue visit to a neurosurgeon in the area who specializes in this, he told me that I actually have a blood vessel on my left glossophyrangeal nerve as well. All this is very interesting to me b/c now I wonder if it really is the lyme/ebv or the blood vessel or maybe the blood vessel being enlarged by the infections. You see the blood vessel on that nerve would not explain all the other craziness that sometimes happens in my occipital area, eye area (twitches and tugging sensation), and other nerve oddities around the rest of my body.

Regardless of cause, here I am. The pain gradually came on over two months, hit a peek, and has now quieted down. The game plan is for me to start taking neurontin when it starts to flare again. I have taken the drug in the past but not consistently like he advised me too. Surgery is a last resort, esp. in this case when we don't know whether its infection related or the blood vessel. Anyone else in a similar situation with confounding diagnosis where there can be other causes?

I am such a different person now then I was weeks ago when I was flaring. Its like night and day. I thank God every day for the remission. And it went away overnight- is that its M.O.? I had this last year for a few months - more minor- and had no idea what it was then it went away. This time was a more major flare. A month after a lot of dental work (on other side though). Started gradually and then at the height of weeks of pain, it literally went away overnight. I still have residual feelings, like I am very "aware" of that side of my throat- still feeling slightly like gland and tonsil pains and like Im coming down with something (which is how it usually starts), but nothing like I was experiencing months ago.

Oh well, just though I would reach out to those of you with GPN, we don't seem to be as well represented.

Read this article. Quoting Dr. Linskey here: "Yet up to 40% of normal living patients and up to 50% of patients studied at autopsy have these vascular contacts without having TN"

I was shocked by this statistic. So, apparently just because you have a compression it may not be the cause of your pain.

My TN comes and goes too. Over two and a half years and still that pain sends me right back into a state of utter panic. Then once it is gone, it is a million miles away. Definitely have a solid plan with pain relief in place because, unfortunately, it will probably come back. Remissions are common, especially at the beginning. I'm sorry you have gone through so much. I have issues other then just the nerves on my face as well and no solid diagnosis. Everything seems to come in flares. Many of us have triggers too so hopefully over time you will learn more about the patterns of your flare ups. My triggers are anxiety and stress, weather, my cycle and wind.

Hi Jane. Thanks for your reply. I have to say that what throws me is that mine seems very atypical and doesnt really track other GPN stories so I don't feel too comfortable in the diagnosis. Which then starts to make me wonder if they are right, if they missed something etc. I hate to keep blaming the lyme and ebv. But the dr said he is sure the pain is neurologically based so I guess regardless of causation, etc., we are all in the same pain boat. "Utter panic." That sums it up well, thanks!