Lately my ATN has been spreading to more areas. Now I am trying to find out if this newest pain is really ATN or an infection or something else. When I eat something that is salty or sour or sweet, anything that makes my mouth water (saliva glands secreting saliva) the area of my saliva glands gets a deep stabbing pain, and it spasms up the whole side of my face. Can this be part of our nerve damage? Does anyone else get this?
Thanks, Sheila
Salivation is a pain trigger for some people, Sheila. This is possibly one of the reasons why a lot of people have problems with eating and experience significant weight loss and dehydration. Talk with your physician, of course, but realize that triggers can change over time and frequently do. So this one might pass even if nothing medical is done specifically about it.
Regards, Red
Hi Sheila,
Great question! My salivary gland on my tn2 side goes through extended times (like months) where it just constantly produces saliva. At least I think that's what's going on. I read online somewhere that it's something that tn can do. Sometimes I get that pain you're talking about when eating sour/sweet with it too, but mine goes mainly along the jawline. I'm in the process of getting off tegritol to get on topomax instead, and as the tegritol has decreased, this saliva thing has increased. Hope you're feeling better soon! take care, Lorraine
Thanks Red and Lorraine. Glad I checked back,because for the first time ever,I didn't get email alerts about your replies. Hoping it will pass or just be an occasional thing.
I was being tested for Sojourns disease --- seems like salivary glands started whacking out a couple of months past my diagnosis last year
Nobody has made a connection yet -- even had some gland issues after MVD - but just take steroid and voila - it's gone
About a month ago, I experienced pain in my neck that would come and go. It made it hard to swallow, to turn my neck to the right, my neck was really sore and my mouth was really dry. My doctor sent me to the dentist and he said it is a blocked submandibular gland and he has referred me to an ENT which I have an appt at the end of March. The gland is still tender to touch and my mouth is still dry but it is better for some reason. I have wondered about Sjogren's syndrome as I have several of the symptoms and TN is one of them.
KC, how were you tested for Sjogrens?
I was diagnosed with a glandular infection leading up to my diagnosis with TN, and am pretty sure I had one, my glands were swollen (you could see them sticking out and feel them easily) and tender from behind my left ear until down into my arm pit, the drs made me do saliva tests and eat this awful cracker without a drink to find out my bodies response to making saliva, which was very very very very painful and my saliva in my mouth felt like acid in retrospect this also triggered pain in my face but at that point i didnt know at all what was going on . I did a course of antibiotics and the symptoms (swollen tender glands, acid saliva) went away, but the ear, cheek, jaw and tooth pain stayed and now i am also having headaches right above my left eye, like i banged my head.
I got diagnosed with a blood test. I also had an ENT show me how to "milk" the glands to get the excess out!
Antibiotics + Steroids made it go away each of the 3 times I've had it in 16 months.
KcDancer and Collette, Sjogren's is a tough disease. I feel badly for anyone who has it. You get stones and tumors in your parotid and salivary glands, and have dry mouth, eyes, and nose, and other systemic problems.
Downrachel, Wow, infected. Nasty experience. It seems doctors always make you hurt more than you already hurt before they get to the treatment.
Sheila, I've been getting twinges of this when eatin sweets or sours. I used to have this issue a long time ago and an ENT gave me something for it I thing probably a steroid. Wonder what's goin on now??? TN or infection? Always somethin...
True Min, always something. i got 4 major health problems solved in 1 year, then 5 more showed up! FRUSTIPATION!! My salivary gland pain did just what Red said it would, he said different triggers can come and go. I don't know why it was so bad last week, but it's gone (knock on wood) now. It just made me pray again for everyone with TN who experiences all those symptoms and triggers and constant pain. What insane, unbearable pain TN is. How it damages people's lives and ability to live normally. Many can't even support themselves. That's a terrible blow, especially in countries where there is no disability or welfare to lean on.
Blessings, Sheila
oops -- I meant I got the diagnosis ruled OUT by blood test --- hitting 50 -- body is going haywire from head to toe!
I dug this post out as I have similar pains but I have had antibiotics and have no redness or swelling in my mouth so I'm sure it can't be an infection but my glands hurt most of the time on my TN side, they arent particularly enlarged though they just hurt?
Yes Touie, Yes, that's nerve pain. There are nerves that go to the salivary glands, and when they are stimulated by strong tastes or even smells, they spasm up and cause the other nerves on that side to hurt at the same time.
Have you had a white cell count done lately? Swollen or sensitive lymph glands tend to be an indicator for inflammation from any of a number of causes. Infection can be one of the causes. Auto-immune reactions can be another.
Get this checked out, Touie.
Regards. Red
Ok thanks I will, the pain is only on one side though surely if there was a general problem both sides would hurt?
Richard A. “Red” Lawhern said:
Have you had a white cell count done lately? Swollen or sensitive lymph glands tend to be an indicator for inflammation from any of a number of causes. Infection can be one of the causes. Auto-immune reactions can be another.
Get this checked out, Touie.
Regards. Red
I have a blocked submandibular gland that I am waiting to see an ENT for. It is not as sore now just if I touch it. I wonder how it is related to TN as when it was really sore it hurt to swallow and seemed to trigger the TN if I turned my neck.
touie said:
Ok thanks I will, the pain is only on one side though surely if there was a general problem both sides would hurt?
Richard A. "Red" Lawhern said:Have you had a white cell count done lately? Swollen or sensitive lymph glands tend to be an indicator for inflammation from any of a number of causes. Infection can be one of the causes. Auto-immune reactions can be another.
Get this checked out, Touie.
Regards. Red
I sometimes get pain in my glands on that side as well. The more I learn about this disease, the more and more I hate all of it. This is interesting to know though. You know how sometimes you get symptoms and you just ignore them cause there are so many variations of things, you just don't know. Mine all started at 50 KcDancerKc. I know what you mean.....
I am new here and new to TN ( I have type 1), but my saliva gland hurts, as well. Actually I was 'ok' all day because all I ate was a yogurt, but then we decided to have fish and chips for dinner and that hurt!
That's interesting. I just keep learning so much. I'm new as well. Welcome to the boards. Sorry we both have to be here, but it's an amazing place to learn and get to know nice people. Good luck Jennifer!