Is it possible to have more than one type of neuralgia?

Hi all,

I am a newcomer here, but have lots of questions to anyone who would like to give an opinion :) I am wondering is it possible to have more than one type of neuralgia at the one tine. I have been diagnosed as having atypical neuralgia, bilateral, but I also have alot of pain on and off behing my eyes , deep in my ears, in my tonsils, and most annoyingly, my throat, down to the breastbone feels constricted, no problem eating, but it feels like someone is pressing down on my throat, also the back of my neck gives me trouble. Looking at tv, or the computer has to be done in moderation, as it hurts my eyes. Of course I also have the other symptoms such as shocks into teeth, pain in jawbone, and burning in fleshy part of cheek...boy, the list goes on!!!! I am on 800mg tegretol, was told to go up to 1000mg over the last two weeks, but it made me dizzy as hell !! The tegretol is helping, but I have the sneaking feeling that is is losing its effect????Also, over the last couple of weeks, I have been experiencing what I can only describe as short pains into various lower body parts, randomly, maybe my wrist one minute, knee the next, palm of hand etc..??? Anyone share anything on that loooooonng list?? I hate to sound like a moaning minny, but I like to think someone on here knows what all this feels like. My family are Fantastic!!! My hubby is brilliant, I have so much support that I couldn't ask for more, so I am lucky for that.

Hope things get better for all of you out there that are going through this :)

ellen x

Yes, you can have it all over the place and in different forms. I have bi-laterial, atypical, post-herpetic, occipital, pains in eyes, cheeks, scalp, forehead, teeth. The Devil wears a different dress every time. I am just one big 'ol pain in the face. We are all here to help each other and we all understand the pain, welcome to our site.

Susan

Yes, indeed. You seem to be presenting with symptoms that might be attributable to TN, ATN, Geniculate Neuralgia (deep in the ears), glossopharyngeal neuralgia (throat, neck, palate, back of your neck), and possibly a neuralgia of the Vagus nerve (heart rate irregularity). Pain in your extremities could have connections to circulatory problems associated with Vagus nerve neuralgia -- or it could be something entirely different, such as Fibromyalgia. I think it might be wise for you to be evaluated by a cardiologist for the feelings in your chest and extremities, and possibly also ask your neurologist to assess for a differential diagnosis of fibromyalgia.

I have experienced what I think of as little sparks or shocks maybe in different places of my body and I think it is from the increased dosage of 800 mg of Carbamazepine. I only experienced this after a couple of days of the higher dose. I haven’t had any today tho AND my pain has decreased a lot. Sooo, I’m hoping I will continue feeling better. I had some nasty little migraines the last couple of days too. I took prescr. naproxen 5oomg for that and it helped. min

Hi Ellen:

I am so glad that you are here. I am cheered by the fact that you have a loving husband who supports you through your pain.

I also have bilateral TN and this week I have been to the ER twice with new pain in my throat, tonsils, tongue, teeth, jaw, neck, jaw line, and deep in my ear. It sounds a lot like yours. It was diagnosed as GN. If this is what you have I empathize with you with all my heart. If its something else I still feel for you with all my heart!

I was given information similar to what Red said: that GN usual happens in people whose vagus nerve and glossopharengeal nerve get in each others way at some point. I was told to come back to the ER if I had chest pain, high or low pulse or BP,nausea or vomiting, or any organ pain. The vagus nerve "wanders" and is necessary for a lot of the body to function.

800mg of Tegrtol is' wearing off for me as well. I just feel tired, blind and drunk.

I hope this helps.

Izzy

Hey Izzy, I wanted to know, if you can tell me / what kind of pain you experience in your throat and tonsils and tongue, and have you had this type of pain before? If you don’t wanna talk about it I understand. I sure hope they can find something that gets it gone tho. Min

Hey Min. I don't mind telling you about it. The pain in my throat, tonsils and tongue started about ten days ago. I was almost pain free at the time (I've been getting nerve blocks with sensorcaine for about two years now, and they are really working). The pain also went up my jaw line and deep into my ear. I have constant pain that is intense as well as short, sharp shocks that are frequent and not triggered by the usual suspects. I have had trouble swallowing my saliva and cold food: those trigger pain a lot. I have definitely never had this pain before: it is unforgettable.

I hope this helps. Izzy

Interesting and icky. After I had GKRS whenever I would drink a milkshake when it would go down the back of my throat…it was like swallowing ice. Since I have been on the Tegretol, I’ve not noticed it…but. that could be because of more intense pain in the front!!! Most likely. I also have the jaw line and inside the ear pain too. Guess there’s just no rhyme or reason with this. Thanks for tellin me. Min

Just wanted to update all, I am going to ask doc to decrease me off of the Tegretol. I think it is causing me to have problems with my throat ear swallowing et.al. Over the weekend it got even worse, felt like I swallowed a porcupine on the left side of my throat. My ATN is on the right side. I have always had minor issues with the swallowing and jaw aching but it got more more pronounced when I started the Tegretol and has continued to escalate as I have increased the dosage. The only way I will get some peace of mind is to titrate off of it. Of course, it could just be the condition is getting more complicated. Hopefully not, we shall see… Peace, Min

Min and Izzy. Before you taper off Tegretal, first ask your doctors whether you might be developing glossopharyngeal or geniculate neuralgia. Both can result in difficulty swallowing, and geniculate neuralgia is characterized by a stabbing ice-pick pain deep in the ear. If you've had a Gamma Knife, such neuralgia may be complicated by nerve adhesions or generalized lesions caused by the procedure.

Regards, Red

That’s just it I am not sure of that and there are other drugs out there. I haven’t received a call back from him yet, so I do not know what he wants to do with my request. I let you know. Min