Just wondering…my TN is on the right side and during an episode my tongue will swell on the right side and it feels like I can’t swallow correctly on the right side am I the only one
It might be that you have more than one nerve involved in your face pain. Glossopharyngeal Neuralgia affects the 10th Cranial nerve rather than the 7th. One of the symptoms of GN is difficulty swallowing and/or a feeling of thickness or pins and needles in one side of the tongue. My wife went through that kind of pain before her TN and ATN emerged as the dominant patterns.
Regards, Red
"RED"
Thanks so much for the information. I know I do have a few things going on unfortunately…I know i have bilateral TMJ AND I suffer from chronic migraines as well. I am new to this group and love the support and information it offers what a wonderful thing to be part of. I was also diagnosed with a venous angioma, a 4mm lesion to the LEFT frontal lobe and a pineal cysts. I was wondering if you or anyone would know if that could contribute to the T.N ? I would think if it did the T.N would be on the LEFT side not the RIGHT?? Thanks again for the information
A lot of TN patients also have migraines. Whether the two medical entities are associated in a cause and effect relationship doesn't seem to be known definitively.
TMJ is frequently over-diagnosed by badly trained general dentists, so you may want to be sure that whoever assigned that label has documented the most reliable signs of the disorder. To qualify with a high probability of accuracy, a TMJ patient should have visible deformities of the joint seen in X-ray or MRI, or "clicking" or "locking" of the joint, or visible wear patterns on the teeth consistent with misalignment of the joint(s). If none of those signs are present, then a second opinion would seem to be in order.
I obviously can't diagnose you, Dee. I can only say that in 20 years of talking with patients and hearing about the diagnoses they have received, I've never heard about a reliable cause and effect connection between pineal gland cysts and TN pain. The exit of the trigeminal nerves from the brain stem is well away from the central position of the pineal gland, so vascular compression would seem to be an unlikely candidate. Whether some other mechanism could be involved, I simply don't know.
I cannot claim to know very much about veinous angioma. But again I've not read or heard of an association between any form of tumor or malformation in the frontal lobes and TN pain as such. That said, there's a lot about this physiology that I don't know. You really need to consult in person with a neurosurgeon or neuro-imaging specialist to shed light on these questions.
Go in Peace and Power
Red
Red
Thanks again for the information I got back to my Neuro on the 23 of this month I love in va it has been very cold here and we’ve had snow the cold and wind has put my pain in over drive the worst it has ever been
Hi Deelite143,
I have problems with my tongue and the back of my mouth around my tonsils. There is also a Ben's Friends Page for Glossopharyngeal Neuralgia and after discussing my symptoms with people on that site I know now that I have symptoms of that as well. I have severe pain along the side of my tongue and on my tonsil on the left side or the right side as I am bilateral. Usually only one side will act up at a time. And I have flare ups along that side of my mouth that makes it feel swollen all the way back to my throat. It does affect my swallowing or the feeling of swallowing anyways. Very unpleasant. I also get a one-sided sore throat sometimes.
I also get migraines and like Red said there are many with both TN and migraines. As if having one or the other isn't enough! My migraine pain hangs out around my left eye and I will get ATN attacks at the same time. It is really just one big mess but I get all kinds of terrible symptoms with that like aura, dizziness, nausea and blurred vision along with stabbing pain behind my eye and down the side of my nose. I also get a feeling like something is stuck in my eye, tingling around my temple and small spasms above my eye.
Winter is terrible for me. This past summer I was basically in remission and actually went off of my med for the first time in two years. Unfortunately by December I had to go back on it.
Jane
Jane
Thanks so much the information. I find it very painful as well I didn’t even know until joint this group that you could have more than one TN and then have ATN as well…my tongue swells on the top of the tongue on the right side and feels like it swells all the way down my throat …when your tongue swells is it on the top of the tongue or the side? Everyone looks at me like I’m crazy when i tell them about it . I have shown it to many many doctors…I used to think i happened when u had a migraine. I just seen the E.N.T. the 15 just a couple of days ago (i will not be returning) he looked in my mouth and said umm I don’t know what could be the cause but if say ITS YOUR NORMAL!!! I used to have Faith in doctors NOT anymore . I got to the neurologist on the 23 of this month I can not wait it’s the only thing that keeps me going. I am to like you the summer isn’t nearly as bad for me. Best of luck to you .
Justjane37 thanks so so much
Hi again,
The whole left side of my tongue will feel swollen. It's awful. The side hurts a lot and sometimes I get zaps across my tongue. Oh I know how you feel about people thinking you are crazy. I have stopped describing my pain to everyone close to me. How do you tell someone that your tonsil hurts? Or that you have a sore throat---but just on one side. I find sometimes the pain is hard to pinpoint. It is just there and it comes and goes and moves around.
The Dr. merry-go-round is exhausting. There comes a point when you realize no one can do anything other then hope medication works. Having a good nuero makes a big difference. I hope your appointment goes well. Ask lots of questions and make sure he knows about TN and facial pain--not all of them do.
Jane
Justjane37
Thanks I hope my appointment goes well too.I’m sorry you have the same crazy issues with your tongue…I thought i was alone in that one. Mine will swell on the right side and like I said all the way back I had my tonsils removed but I feel pain back there I thought maybe it was scare tissue so crazy. It is so comforting to chat about it with you . when my TN first started It came out the blue (maybe a shock here or there)but when it hit it hit me hard.I woke up one day in so much pain I couldn’t touch the right side of my face and I was in so much pain I couldn’t stop crying.my husband took me to the doctor I was put on tegretol I was back at the doctor for the next 3 days and up to the max dose.The pain did ease off for a bit with bad episode in between until the tegretol just quit wirking. Now I’m on gabaphenton it to worked at first now not so much but my pain is so different now most of my pain feels like it’s in my eardrum and I’ve never had an earache before in my life. I feel terrible for people who suffer with ear infections. My pain is now consuming my life it never let’s up. If it’s not a migraine which by the way when i get one can last a week at a time or more it’s all my other stuff my ear always hurts and then the shocks of pain on top of it and the tongue and with my migraines my blood pressure goes up which my blood pressure is normally low .I am a new grandma and would love to feel better to enjoy it. Have you found anything that works for you? I take hydrmorphone for pain but it either knocks me out or makes me sick so i don’t like to take it . sorry to bombard you with all the questions. Thanks so much for all of the information.
Best wishes
I am sorry that you are having such a hard time Deelite. We share many symptoms and it can be completely overwhelming and just so exhausting. Having flare ups in so many different places just makes me constantly afraid. You know? What will today bring? Which hell on earth is going to flare up this time?
The migraines and ATN combined are debilitating. I am a single mom and work full time. I can tell you that I have no idea how I do it sometimes. Looking back over the worst times with TN I have no idea how I hold it together and keep going. I just think what is the alternative? Well, I know what that it and believe me I have little pity parties for myself from time to time. I have to release all those pent up emotions and fear.
None of the medication choices seem so great and leave most of us in some type of pain anyways or dealing with horrendous side effects. I have been on Amitriptyline and Nortriptyline. Have you tried a tricyclic? They can help with ATN type of pain. Both have helped to some degree but not right now. Winter is horrendous for me. And it certainly doesn't help with migraines. Some people use Triptans and have some success with that.
I hope you are having a low pain day. I sent you a friend request.
Jane
My hat goes off to you. I really don’t know how you manage …I have days I can’t pick my head up off the pillow. I couldn’t imagine doing it all by myself your one he’ll of a woman and I give you props.I am very tolerant to pain but of course that was before I had to deal with any of this . it just makes it so hard to get up and move forward everday because it has changed me just sucked every little bit of energy or ambition I had right out of me and I do not enjoy anything . I have not yet tried the triptans guess I’ll talk to the Neuro on the 23 . friendship excepted .