A few questions 1) viruses and 2) atypical GPN? 3) all over "unwell" 4) eye tugging

General General TN & GPN (Old Site)
1

I posted for the first time a few weeks back. I am currently battling reactivated EBV and CMV and Lyme and have GPN. Here are some questions

1. In an infectious cause, Is the damage caused by the viruses/bacteria irreversible - meaning if the virus or bacteria is treated, can the GPN recede?

2. For those of you with "all over" pain, not just on one side, can a blood vessel on one side cause ALL OVER throat/tongue/teeth/eye/cheek/jaw pain? Apart from the illneses, I also have a blood vessel on my left side impinging the nerve. So we are not sure if the GPN is from blood vessel or the illnesses. Has anyone with a successful MVD for one sided blood vessel had all over pain?

I have all over constant and atypical GPN. Is there such a term as atypical GPN? Meaning, I dont feel the intense shocks, but have almost constant burning, tonsil twisting, raw, knawing, strangulation feeling with spasms as well. I feel that I am walking around 24/7 with strep throat/sinus infection and tonsillitis and am low on magnesium or b12 all day long!!!! I wish it were that easy or one of those causes. Honestly the only time Im okay is eating and sleeping.

3. How does the rest of your body feel? I understand that you may want to lob your head off, but do you feel thats its making you tired, unsteady, just "off" all over? To me being off in the head just translates throughout my body. Like I am very unwell and living at a deficit in functioning all around. I realize I have viruses/bacteria I am battling, but honestly, THIS is the absolute worst symptom. I might not even know I was sick but for the GPN....

4. Anyone with eye tugging sensation on the impacted side? Again mine is all over but on the blood vessel side felling like someone is pulling my eye in different directions.... like a tugging.

I feel so hopeless to have this widespread constant issue, it lessons the possibility this will ever go away, and Im not sure whether to hope its the viruses OR the blood vessel.....

thanks for listening.

L

2

Hi Pyr2 - you've got heaps of questions here, and I'm so sorry you're having a rough time of it. Sometimes it takes a while to get the condition and pain under control, but eventually you will. The trouble with this disease is sometimes it takes a while to work out which mix of meds etc are best suited to you. As you read past discussions, you'll see everyone reacts differently to the meds to it really is trial, error and persistance until you find the mix that works for you.

With your atypical diagnosis - this is the term used when you aren't the classic run of the mill presentation of symptoms and sometime triggers. With Trigeminal neuralgia for example - TN is usually facial pain, sharp stabbing with a specific trigger / trigger point that lasts for a few seconds, but may repeat constantly, ie. multiple times a day. The atypical described by community members is more of a boring constant pain, with little to no relief in a 24 hour period. Someone with atypical TN may also experience the TN1 classic symptoms as well. The two are not mutually exclusive, So with GPN you may also get that mix of symptoms.

With GPN some folk in this community have also commented on similar "aching, boring, 24 hour" symptoms too. Some of whom have been classified as atypical.

Whilst I know you don't have TN attached is a link on TN which is worth watching, even though it focusses on TN, Dr Casey explains nerve damage and some of the biology behind nerve pain, so this may help you formulate some questions to ask your health professional. https://vimeo.com/10284243

You can also find it by searching "The tides of neuropathic pain"

Sometimes the specific cause of the pain isn't obvious. If its a blood vessel - then there are surgical options available,

Not all MRIs show vessels and some folk have gone in for surgeons to have a look, and successfully located a vessel - but from reading past posts you can probably best explore these.

Sorry I can't answer all your questions, but I'm sure folk will respond in time.

All the best,

Smiley.

3

Thanks Smiley for encouraging discussion. This is hitting me so hard. Last night I was on the boardwalk with my kids and it was hitting so hard along with a tightening in my chest and upper middle back and some heart palpitations -almost like I was tensing or freezing up - I guess thats the spasm part. Waves of this every 20 minutes.

And I wake from sleep like my heart is slowing/stopping.

So its the cardiac component of this which freaks me out the most. I might add that I had open heart surgery 8 yrs ago (to repair a valve) and sailed through that without a tear, but this GPN makes me cry daily. Feels like theres no real solution or cure thats a for sure.

Sorry, Im 46 but still in my "prime" so to speak with three kids, two of whom are very small. I have my middle one starting 1st grade next week. I need to be ON for her.

Thanks.

4

Hi Pyr2,

I’m truly sorry that you are going through all of this, especially with children you need to be “ON” for thrown in the equation. I’ve been dealing with this since 2006. My children are 13 and 17 this year. I can’t say this has been easy for us as a family, it hasn’t. Yes, there have been times I haven’t been able to do as much as I want for my kids, husband, or myself. However, I do think that in the long run my being ill has had a positive influence on my children. I think that they have much greater compassion and awareness than others in their age groups. While I wish that their childhoods could have been more carefree, they are growing into individuals beyond my dreams.

I know from prior surgery that I have GPN, but also have TN and VN (Vagal Neuralgia). I too had EBV (Mono) just prior to GPN/VN/TN. It wouldn’t surprise me if they find a much stronger correlation between these conditions in the future.

My GPN is also a continuous strangulation with some other symptoms throw in as well.

“Teeth/eye/cheek/jaw pain” are all usually considered typical of TN. I experience tugging around my eye that develops into twitching which at times is such that my eye stays shut in spasms. Vision can also be affected. I’m not sure if this is the same as what you have going on?

I also have periods of heart racing, slowing, irregular or skipped beats, problems breathing, and partial to full black-outs. I have been told that this is all due to the VN. I agree it freaks me out. It is the worst of all my symptoms.

I wish you the best of luck. Hopefully it will help you as much as it has me to have this community on Ben’s Friends.

5

1. GPN, with nerves I think the sheath is damaged and does not recede. Therefore, the more treatments, shots, zaps and blocks, the more damage and the more pain. My experience.

2. I would never do an MVD. I have the blood vessel on my left side but it has little to do with it. These Nueralgias all come from a long lasting infection. Mine was for 8 months until a surgeon went in. Then the infection was still come and go. I used home remedies but xylatol was the icing on the cake. It will clear and gum infection for good. Got it from Amazon. The GPN is different from TN which is different from ATN which all have different symptoms, burning and pain. They eye pain could be from all of them or from your eye nerve beig damaged but it sounds exactly like mine.

So you probly have GPN and ATN which is what I have. I fall and bump into walls, vertigo.Eating cold and hot feels good and I hate waking up from sleep. I'll tell you what works for me.

Xylitol for your "sinus infection" might be a gum infection. Brush with it, rinse with it, just place it on any redness or gum infection..gone in 2 days! Also some gum has xylitol and Toms toothpaste but its not enough. Good to know if you are out and burning starts. Push warm water mixed with baking soda and salt up your nose to rinse out any infection. Pharmacies have bottles for this for nose surgery patients. Sugar free popsicles by the case! For burning and vertigo-valium is amazing!!!. Botox for the eye, temple, headahes, jaw aches, throat, neck, trapezoid. Percocet for when nothing works. Xanex for when your pitty takes over and puts you in a panic. Pain Manager! They will do shots and blocks, radiofrequencies which are amazing! Have a Trigeminal Nerve block, radiofrequecies on your neck, upper back, do a test shot on your Occipital Nerve which lies in the top of your neck C1,C2. It causes back and top of the head pain, dizziness and I believe basic TN. Have your neck examined, might be a bad disc aggravating your nerves. I did and ended up having my neck replaced it was so bad and I did not know. Neck surgery is an ellective surgery. You must insist upon it!

Since doing all this, my body feels seperated from my head and is able to carry my head instead of my head controlling my body. Vitamins are essential!! Strong B's, Strong D's all this will mess up your thyroid! Magnesium and more. I have just asked my doc for a vitamin shot every week. If you have a Barriatric Doc in your area, they should have these shots.

Have your nose looked at too, I had a deviated septum which caused horrible headaches and infection.

I hope this was helpful, good luck to you!

6

Um, your in the sh#### with kids!! Might not be your heart, could be your thorasic back discs pressing agaist your nerve. Your 46 with 3 small kids, I guarentee you have back and neck issues!! Get to an orthopedic surgeon, skip physical therapy and insist upon disc testing and CT scans! Lexapro works really good for me with that deep, raw, nagging pain from my back.

Pyr2 said:

Thanks Smiley for encouraging discussion. This is hitting me so hard. Last night I was on the boardwalk with my kids and it was hitting so hard along with a tightening in my chest and upper middle back and some heart palpitations -almost like I was tensing or freezing up - I guess thats the spasm part. Waves of this every 20 minutes.

And I wake from sleep like my heart is slowing/stopping.

So its the cardiac component of this which freaks me out the most. I might add that I had open heart surgery 8 yrs ago (to repair a valve) and sailed through that without a tear, but this GPN makes me cry daily. Feels like theres no real solution or cure thats a for sure.

Sorry, Im 46 but still in my "prime" so to speak with three kids, two of whom are very small. I have my middle one starting 1st grade next week. I need to be ON for her.

Thanks.

7

I can't answer all your questions but I can give you information and advice based on my own experience and what I've read. Neuralgias tend to be one-sided but I have heard or rare cases where a person has a neuralgia on both sides. I've read if you have neuralgias on both sides of your head the pain on each side would feel different and pain attacks would likely come at different times.

Yes, atypical GPN exists. I have atypical GPN. But it is one sided and very difficult to treat if you don't get a MVD within a certain time period.

Nerves have the ability to heal themselves. However, nerves can be permanently damaged.

Since you seem to have both viral and nerve issues I would highly recommend you go to top medical institution where they can give you a comprehensive evaluation. Your profile says you live in NJ which is good because you have access to some of the best medical centers in the world. I suggest getting an evaluation at Johns Hopkins or say New York-Presbyterian.

Regards,

Gipp

Since you

8

Thanks so much to everyone for their comments. I am starting to realize that what I experiencing is not classic for GPN and not even classic Atypical GPN and may even be dragging in components of TN! And today a back of the head lightening bolt pain - so maybe even ON! For that reason, any thought of MVD is really not on the table for me. ITs another signal pointing to infectious causation for me as well, the fact that is all over. Maybe its just nerve irritation?

I have thought about a big teaching hosp but don't even know where to begin- Neuro or infectious disease dr? But you are right. Need someone else to see the big picture.

And then I have days like today- we had a beach day trip (without the kids!) and the pains loomed and threatened but never came on full. Took a nice long walk and felt fine. The whole day was not great or even good but tolerable and I think to myself, I can do this without pain meds, I can do this without pain meds. Anyone trying this without pain meds?

Some very very interesting comments, I read them all and really absorbed what each of you had to say. I guess I just have to see how this plays out, given that is most probably all viral based.....

9

I cant even go to the beach! I have percocets, muscle relaxers, lexapro and more. Lortab cause rebound headaches so stay away from those! I went to Augusta GA med center and they didnt help me. I went to UAB University of Alabama and they were very knowledgable! Had the Gamma Knife done there. My main hospital is St. Francis in Cols. GA. My pain manager, Dr. Iqbal is the BEST and without him, I would be in bed all day still. He's in office with Dr. Westerland who is the best ortho surgeon.

10

I too have GPN as well as TN on the same side.
My pain is constant, only relief is when I’m sleeping, although if I wake during the night and have trouble going back to sleep the pain comes quick. I don’t have a pain management doctor. So I suffer, no quality of life. I’ve seen 5 different neurologist and they say they can’t do anything for me, that I’ll have this the rest of my life.

11

You are probably being fed a line of crap!

!I saw 7 different ENT'S & 2 neurologists before 1 got a definitive diagnosis.

The 2nd neurologist was at Washington University, St Louis Mo.

His mane is Dr Joshua L. Dowling, MD.

They had the proper MRI equipment to see the compressed nerve.

Your best bet is a "teaching" university hospital.

Waiting for cardiologist clearance for surgery.

lillybet said:

I too have GPN as well as TN on the same side.
My pain is constant, only relief is when I'm sleeping, although if I wake during the night and have trouble going back to sleep the pain comes quick. I don't have a pain management doctor. So I suffer, no quality of life. I've seen 5 different neurologist and they say they can't do anything for me, that I'll have this the rest of my life.