Hi everyone! I posted on the TN board and then realized we have our own board.
I will try to keep this short. My story is a little different and Im not 100% convinced its true GPN so would love to hear your opinions. I am a 46 yr old female.
I was diagnosed by a neurosurgeon last week after seeing a blood vessel on my left GP nerve. Yes, most of my symptoms are left based; however, I also have lyme and reactivated epstein barr virus so am wondering if we are giving this blood vessel too much credit for causing the problems. Also, have been feeling twinges on my right side so the blood vessel would not explain that or the fact that this all started more like other cranial neuralgias (ON, TN). So Im still banking on its the lyme.
In a nutshell for 15+ yrs I experienced weird flares of neuro symptoms that were never explained. Here for three to six months then they would subside. Usually came after taking antibiotics for something. (Now we know that was a Lyme "herx" reaction to the lyme dying off when antiobiotics are taken). Two years ago it all came to a head. Stiff neck, occipital pain, eye pain and weird pressure sensations that would cause my head to stiffen. Pain from cheekbone to jaw. Ear migraines. Then twitching and burning muscles all over my body. After 6 months of no diagnosis and millions of tests, the doctors started handing out the psych meds. (Im sure this parallels a lot of stories out there. Its criminal and makes me cry when I think about it.) Anyway, taking the klonopin they assured me would make my "stress" illness go away, I got worse. I got edgy and almost psychotic and all my symptoms exacerbated, especially the neuro ones.
It was during the Klonopin that the GPN symptoms actually started. A few members on this board hit it on the head - for me, it felt like someone was pulling my tongue down my throat. An overall burning sensation, but not acid reflux. Then feeling like my mouth and lips were burning. And someone strangling me. It always feels like Im getting strep. Then feeling like my cheeks and gums are swollen and Im teething feeling. I do have more left sided pain and awareness of something off on that side (almost like theres a blister or irritated area or getting tonsillitis) but yet I do not have the intense electric zap episodes that characterize GPN. Mine is a dull almost constant ache that goes up and down in intensity but never so intense that Im screaming or crying out loud. Just enough that I am still functioning, but crying inside- all day long all day long all day long UGH!
After going off the Klonopin, I was finally diagnosed by a lyme dr as having late stage lyme and reactivated epstein barr (mono). (She did special tests that the other 30 or so doctors I saw didn't do- she even apologized to me for all the years of inept medical care I had to that point for not recognizing what I had). Basically, it goes like this - I had a terrible case of mono as a teen. When mono reactivates, it does so in the nerves. Its a doozy. So, the diagnosis for all the cranial craziness was the mono reactivated in my nerves, dropped my immune system, which brought out the Lyme - which to that point my body had been fighting pretty well. So the double whammy of reactivated mono and Lyme was causing all of this. About 15 years in the making.
I started lyme meds for 6 months and felt better. Then when I had the flu, I stopped taking the antibiotics. I stayed off of them feeling pretty good. Now 6 months later here I am - the GPN is back and worse than ever. Still no extreme attacks. Very chronic. Maybe I stopped the antibiotics too soon. And here I am. Unfortunately, the reactivated mono not in remission either. My poor immune system cannot fight this all off.
I should also add that a few months before this latest GPN bout, I had constant eye twitching on the left side (affected side). I also was waking up at night with these bizarre episodes of heart palpitations. (Not to complicate the story but I had open heart surgery to repair my mitral valve 8 years ago - now we know it was probably the lyme eating away at it). So I know palpitations - and these were not normal - I was waking up 8 times a night feeling like I was powering down. Thats the only way I can explain it. So I think there is some vagal nerve component to this. And now the GPN.
Now Im at a cross roads in my lyme treatment. I realize so much of its trial and error of this drug an that drug but its been over a year and no steady progress. I feel like my lyme dr is thrown by the GPN because its not a typical lyme symptom, like joint pain, etc. She was concerned it was some type of allergic reaction and I am sure its not. I am very grateful for her diagnosing years of hell but now not sure what our game plan is. My husband remembers her saying that this would take 3 yrs to see progress. Somehow I must have blocked that out.
And I'm sort of stubborn b/c I refuse to take neurontin. First I feel like I don't have the giant intense episodes and want to save it in case I really need it one day. (Although the neuro is telling me it needs to be at a steady level to keep the pain at bay). Second, I don't want to take it b/c I don't want to feel like a zombie. Despite this chronic hell, Im a pretty athletic and active professional with three kids and I do not want to be zoned out b/c that would depress me even more. Third, I don't want to take meds b/c there should be a cure in my situation - meaning, I have a virus and bacteria,- a known cause - lets take care of that and maybe my symptoms will go away. Focus on cure not pain relief. On the other hand, having a case of undiagnosed lyme for so long may mean the damage is done for me so I may need to make peace with lasting symptoms.
Well, thats it. Im leaving out so much but I don't want to drone on and on. Here are my main questions
1. Does it sound like GPN?
2. Anyone else here with possibly a bacterial/viral cause like me AND a blood vessel?
3. When I am having this chronic GPN, I feel "off" mentally. Like the nerves arent working for me in my brain cognitively, etc. I also cry at the drop of a hat. The littlest stress throws me off. Like my executive functioning gone and very anxious.
4. The dr mentioned surgery but again with bacteria/virus in the picture, surgery to remove the blood vessel seems like a crap shoot in terms of causation
5. Anyone with vagal symptoms? Or other nerve symptoms systemically?
6. Anyone with other facial pain that doesn't fit the true GPN? Or with other cranial neuralgias? ANyone worse when they get a cold?
7. Anyone harbor a fear that this is deadly? I have had a milliion scans but the minute I feel the sensation I feel like they have all missed something like cancer, a tumor. This despite knowing the craziness that lyme can cause with its migrating neuro symptoms.
Thanks, I know this is long and rambling. It feels good to tell my story. I feel like everyone sick of me. I don't even talk about it or mention it to my family and friends b/c no understanding. Its like they are all, well you look so healthy, you run, you lift weights, you can walk, talk, your face isn't drooping, live with it. Meanwhile I am dying inside.
L