New glossopharyngeal Neuralgia, have lyme and reactivated ebv, too

Welcome New Member Introductions
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Hi everyone,
I joined a month ago during a horrendous GPN flare. Now, Im posting during a time or remission and more clarity!


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.
L

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Yes, your story is very different then mine.I started out 25 years ago with what I thought and so did my best friend,a sinius infection.I had a mess of infection going on about 2 years prior to tn1,in my teeth and it took almost another year before I could get ins. to surgically remove them because the dentist broke them off in my mouth and was unable to pull them.Then about a year after they were out,I went to my ent because I was sure it was my nose causing the problem and I was scared, because i heard that the surgery to fix that was very painful, my teeh were bad enough. They wanted to take 6 teeth and then reschedule for the other 5.Yep! I acted like a 2 year old untill they took all 11the 1st time.Then my ent ( who I have known since I was a child, a family friend)said it was tn1and to make a longggggg story a little shorter,then started all the meds. and their side effects, nothing was helping the pain was spreading all over the right side of my face.7 years after those words trigeminal neuraliga and one med. after another in different combo’s then 2004 I just didn’t know what to do. I had not found this web site yet.So I decided after seeing many doctors that gamma knife might help.WRONG!!! made everthing way worse for years,some side effects went away,I still deal with some,like the whole right inside of my mouth is numb.Nothing was helping,pain pills kept uping I was a mess. 2006 had mvd with Dr. Casey,I always had great doctors.That just made it worse yet.By Jan.21-2013 I knew I had to make a drastic change.I sure did got off all the pain pills then switched meds. one newer( lyrica) and one very old one,it not only helped alot, IT SAVED MY LIFE in nov. of 2013(phenobarbital) the burning, the boring, aching, throbbing, more constant then not.Then it did something I did not know could happen it moved to inside my whole nose, (it hurt to breathe)then my lips,then my tongue,and then down the back of my throat,No I don’t have any swelling.I felt like I was going to choke trying to swallow soft foods but not all the time.I get the tonsil like pain and feeling like coming down with somethingbut the strangling feeling, ect.I don’t know about,I’m so sorry I can’t imagine.I read stories like yours and I now really do feel blessed.No, that’s not right I have always felt blessed but those feelings sometimes when the pains becomes so constant and unbearable that those good feelings get pushed down so far and the longer that kind of pain goes on the farther they keep getting pushed untill, at least myself, I often forget how blessed I am. It takes people like you to remind me every now and then, thank- you!!! Praying you find the help you need soon dawn

1 Like
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Dawn- Yours is quite the journey. When I read stories like yours they seem more straightforward cases of GPN. I sometimes wonder if that is what I really have b/c mine isn't the classic picture of it.

I don't mean to sound the picture of pain. Besides that I am actually pretty athletic and vigorous person. I find that to be my medicine. Although I came pretty close to starting the neurontin last night. Its like I am in this battle with the pain- I want it to be gone on its own, like I am willing it away. I just don't like the way I feel on meds.

I wish there were other posters with GPN!!!! Thanks for responding!

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Iam quite intrigued by the estein barr virus. i had that when I was 19. Guess who reared its ugly head at 20...? After ebv I got my first cold sores, and that is when TN started. The whole herpes consortium is a mess, no? My sister never had ebv (that I know), and she gets TN with regular cold sores too. Can you tell me more about the connection?

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Hi Tineline

Far from being an expert, but from what I can tell, HHV-4 EBV, lives in the nerves. So 95% of get it and never know it any different than a cold, but for some of us, it becomes mono b/c the state of our immune system. When you get mono, its the typical fever, swollen glands, fatigue etc. Then it goes dormant. For an even unlucky bunch of us when it reactivates, it reactivates not with the original fever symptoms, but with nerve symptoms and wackiness all over the body. And most dr's dont do the specific test for reactivated mono, so its not determined until much later. Mine reactivated with all weird head pressures, occipital pain, neurlalgias, burning all over my body. Mine is still showing as active (Igm marker still positive) two years later. The thought is that the virus is making my immune system so weak that is why I can't fight the lyme as well.

Everyone is different, but that's how Im tracing my path to this forum. If you suspect it might be viral, I would ask to be tested for reactivated ebv. Its not just the plain old ebv that everyone has. When it reactivates, its a doozy.

L

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Thanks! I will def try to get a test in for that. Neuro and I already established that it is viral, but I do have lots of fun, additional neuralgia here and there. But still nothing to do with fixing it, I guess? Yeah well, I'll do it for the registration, if nothing else. One more individual for the research! :-)