Does anyone else have GPN bilaterally?

Does anyone else have GPN bilaterally? I hope someone else is out there. (not that I would wish this on anyone) I know my neurologist thinks I'm making the whole thing up, since it's affecting both sides now. Having GPN on both sides is probably more rare. Is it? Seems like the rarer the disease, the more doctors don't believe you. Especially since I already have Atypical neuralgia.

The GPN started 8 months. I lost the feeling in the right side of my throat. Still has never come back. You'll laugh at this one. I had a barium swallow/video done. The doctor told me that I was drinking too much diet tea and that's what caused it! Idiots.

I know it is GPN. I have horrendous pain at the base of my tongue. Alternates from one side to the other every few days. Deep ear pain majority of the time on the right side, but does effect the left too.. Tinnitus comes and goes for 1 1/2 minutes on the right. Also the usually migrating tooth pain, losing my voice for 1-2 minutes and periods of difficulty swallowing.

All my neurologist & other doctors ask is if I'm aspirating any food or liquid. Since I'm not they don't care not believe me. GRRR!

I have it. My neurologist believs me, I can do chapter and verse on it. My family physician has no clue, but she is nice.Symptom of M.S., do you have that too? I have bilateral TN, and bilateral GN. There is very little out there on it. Find what medication helps, and take it. I am used to it and can tell when it goes BANG or wants to have a life of its own. It also can go to your jaw. The jaw is new to me I have just had that a little bit. Dos nuts and hot liquids bother it? Take some extra B12, that helps me and you can buy it is the drugstore, water soluable, so you cannot take too much. Find a good neurologist.

Good luck and keep hope.

Hi Goaskalice and sorry you have it on both sides! How unlucky is that! I only have it on one side and that’s bad enough although I had MVD nearly 4 weeks ago of 9/10/11 nerves. The background pain seems to be resolved but still getting miserable toothache. You are the first one I’ve heard mention the toothache! Now if I could get rid of that! See my surgeon for post op on Tuesday. Watch this space so to speak!!! Hope you are not too bad. Regards Lorraine from Perth.

Perhaps all our neurologists could be directed to this site. Yes, I have all the pain you have mentioned, including the tooth pain. I just thought that went with out saying. Its amazing what pain we do actually live with. I think it's very hard for people around us to understand. Another specialist may be able to help you. Good luck and I am sending lots of healing.

What do you take for the pain?



warrior woman said:

Perhaps all our neurologists could be directed to this site. Yes, I have all the pain you have mentioned, including the tooth pain. I just thought that went with out saying. Its amazing what pain we do actually live with. I think it's very hard for people around us to understand. Another specialist may be able to help you. Good luck and I am sending lots of healing.



Funtsie said:

What do you take for the pain?



warrior woman said: The drugs I have been given over all the years I have had the pain have considerable side effects and I wish I could give you the name of one that worked but I cant. I do take lots of natural things from a naturopath to help me cope with the pain. Next stop for me next week is a new ENT . I was referred to him by my Neurologist. We all have similar pain it seems to me and we all have our individual paths to go on. Some people have the surgery and it works. Me? I hane not found a clear path foward with out this pain. I had surgery for this 17 years ago. Its been acceptance for me but never giving up hope. At night I sometimes take Mersyndol if it gets beyond me. But that is not a solution. Good Luck and I think we are all thinking of you.

Funtsie, thank you. I appreciate you sharing your experiences. I actually have atypical bilateral TN too! Didn't want to mention it on the original post because I didn't think anyone would believe me. It's it horrible for that thought to even cross anyone's mind? I believe initially we are all met with disbelief by doctors or met with uninformed/ignorant docs. I share your bilateral jaw pain. I'm sorry you are suffering too. As you said there is so little information out there. On the Mayfield Clinic's website. it stated that there is no surgical avenue for us. I don't have MS according to a recent MRI. Do have random finger lightning bolts. 4 times in various left toes. Makes me nervous with the MS thing. My symptoms follow the MS path. I don't know. I just wish I knew what the cause of this s**t is. Funtsie, do think we are 1 in 500,000 with our bilateral 2 different conditions?

Funsie, Have you ever had episodes of muscle spasm in your throat? I have, on several occasions, were I couldn't breath ( for 1 minute). Another time, just the last few days, were I was drinking water, my throat spasmed and it shot the water up through my nose. First few times it happened it really panicked me. Now I've learned to stay calm, do a controlled counting in my mind, because I know it will only last, at the most, 1 - 1/12 minutes.

Have you experienced any facial spasms?

Funtsie said:

I have it. My neurologist believs me, I can do chapter and verse on it. My family physician has no clue, but she is nice.Symptom of M.S., do you have that too? I have bilateral TN, and bilateral GN. There is very little out there on it. Find what medication helps, and take it. I am used to it and can tell when it goes BANG or wants to have a life of its own. It also can go to your jaw. The jaw is new to me I have just had that a little bit. Dos nuts and hot liquids bother it? Take some extra B12, that helps me and you can buy it is the drugstore, water soluable, so you cannot take too much. Find a good neurologist.

Good luck and keep hope.

Dear

Yes, I'm also suffering from GNP bilaterally!

Initially it was the right side of the tongue, ear, throat and upper back teeth but after 3 months it was also the left side. It all started in July 2012 but in last 2 months I'm far better and without medication. Do not be panic, just take your medications in time, take good rest at night, do not consume alcohol / wines (fermented food) for few months, you will be better. Do not worry too much and do not pay too much attention to it. ( I know it is not possible). Also do your regular workout, go for long walk, do your prayers regularly. You will definitely feel better.

Good advice Preety,

I have had tn 20 years, GN 18, and I do just that except for the alcohol. Alcohol takes the MS tremor away! And I pray to St. Blaze, he is the Saint of throats. Music helps and so does helping others so you do not think about it.

:)

Judy

I was diagnosed in 2012 with bilateral GPN. I have had an MVD on the left side in March 2013. So far so good for that side. I am scheduled for another MVD this coming March for the right side.
I was also a bilateral TN patient. Same surgery was done on both side. Minor trouble with pain which is more like an occasional mosquito bite.
Looking forward to looking in rear view mirror for all of this.