You are totally correct DainBramage. Cool name by the way! Can't remember if I mentioned that. lol
Now that you mention it I did feel more understood with ear pain. I guess most people can related better to an "ear ache" but they sure do look at you funny when you tell them that a couple of Dr's couldn't find anything wrong!
I was with my daughter and her 2 little ones yesterday and I was having soreness before brunch (she took me out) but I pushed the thoughts of it out of my head and concentrated on the youngest one who I was sitting beside me and took care of him and YEAH to say, I was fine! My daughter even shoveled my walk for me which I had been putting off. I felt so good after that I went out in my back yard with my dog and did a few things there, it was warm and sunny and the wind had died down. We have a forecast of warmer weather and sunny this week. Love it! Like many here I'm sure, I do better when it's sunny outside, just lifts the spirit.
Thanks, cause I'm thinking the apprehension might worsen the pain?!?!?
Take care,
Cheryl
DainBramage said:
Christine and Cheryl -- First, Christine, a big Thanks for your earache - well, YOU know! :o) See, in the diagrams I 've seen, there's only one teeny 5th cranial nerve branch that shoots over to the ear area and a bizillion to the face/jaw. Ha- it's amazing to me when asked to describe my pain, that the ear-related descriptions evoke EMpathy from folks, but not-so-much from the face pains, which get SYMpathy only! So many people feel a kin-ship for that danged EAR pain. Gee, folks, they're ALL rotten! ('Course, I'm preachin' to the choir here.)
Cheryl, I know the fear of doing anything - just dreading the worst. But take it from a long-time sufferer (15 years?) that a multi-tasking view should be used when you can. By that I mean, I let close ones know I'm going through an especially rough patch, while I smile as best I can and just plain endure as best I can so that life doesn't pass me by! I would have lost most if the past 6 years had I not adopted that pattern. Let me deeply encourage you to ENJOY what you can, instead of FEAR the worst that mostly hasn't happened yet. Otherwise, you must just loose precious LIFE time only because you're apprehensive. For each and every life -especially for US- we have to TRY to enjoy. Don't let fear alone ruin Christmas 2013: there's no do-overs. It won't be back for you OR your family, especially the little ones making grand memories of bonding family time. You DON'T want them to remember YOUR PAIN, do you?? (And it helps a lot to know SOME others understand FULLY! Thanks, guys - you know who you are, fellow neuralgia sufferers! You'll help me have the BEST time this year instead of the worst.) Merry Christmas TO ALL!!
My ear pain is better since I had MVD in September, but, I can easily still get it riled up if I’m not careful pulling turtlenecks on, taking glasses off to quickly, or randomly and unconsciously poking or stroking my fingers around the area (as if I need to check to see if it still hurts…duh, I really need to watch myself).
The first time I met with my current neurologist two years ago she studied my face carefully without me knowing what she was looking for. She said the whole left side of my face was slightly swollen. Sometimes my ear still turns beet red if I have been overdoing it or eating sweets. So I do have autonomic problems as well as the deep compression that was decompressed. I also had the seventh decompressed. Now my N/S would like to do another surgical procedure to cut the glossopharyngeal nerve. I also have ON and that’s what I think causes the blurriness in my affected side. But on the whole I am heaps better since the MVD so crossing my fingers.
So, in answer to the post, swelling can definitely be experienced with TN. Please find a doctor who knows what to look for.
Swelling; Years ago my eye lids would swell up to the point of being in my vision but this was ignored by my eye doctor. When my face pain went turned unbearable and I finally started going to doctors to figure it out. The swelling was one of my weirdest complaints. It did not make it any better that the doctors were unable to see it. My family, friends and my self could see the entire side of my face, ear and neck was swollen. At this time my mouth swelled up so bad I could not close my mouth for two reasons, 1-teeth would not fit together, bottom front teeth pushing into top front teeth would cause more pain. It would get better if I could get good sleep, but it would start over each day and end with my mouth so swollen I had to hold my teeth apart because touching would set off the jolts of lightning through my face. I was eating and drinking thru a straw because chewing or talking would cause the swelling to be instant and pain to be instant. As time went on the muscles in my face turned ridged making the pain constant. Over more time the swelling moved to more of my face and when my TN went bilateral the other side began to swell just as the first side did. Last February I had my MVD and now the swelling is much better on the one side, but still present. I got supper stressed the other day and it was like a light switch, all of a sudden my mouth was swollen, I could not touch my teeth together for pain and misalignment. I also get a weird metallic taste in my mouth on that side with the swelling.
Ear Pain was a big complaint as well. I was misdiagnosed with ear infections, sinus infections, and "headaches may be from your acid reflux". Prior to my MVD the ear pain was so bad it hurt to listen to a clock on the wall. Any noise would be felt as jabs and jolts from my ear thru my face over to my nose. It ever hurt to breath. Now my ear bothers me more noticeable with congestion. So I treat it and my ear pain gets better. The headaches I have give me congestion in my sinuses and ears as an autonomic response.
We have what's called a Trigeminal vascular system that is tied to our Trigeminal nervous system. They do not play well in the sandbox together. Migraines are part of this system, as well as other TAC's trigeminal autonomic cephalgias. There is even stuff like Trigeminal autonomic reflux- meaning your TN is causing the vascular system to malfunction.
This is a non complete list of like Autonomic symptoms that go with TAC's
My face pain and headaches are like a merry-go-round. One can set off the other. But all is so much better after the MVD. I am not cured but able to function better.
I am not so Glad to know others have the swelling and ear pain. But it lets me know I am not crazy and the doctors have a lot to learn, so we patients must educate them or demand they do it them self's.
I have been put on Verapamil for headache maintaince. Its BP med. This is the first medication that has helped the swelling in my face. I use Indomethacin or Ibuprofen for breakthrough. I treat my Chronic paroxysmal Hemicrania, the ON and My TN different. But point is I have to treat all different because they respond to different meds or treatment.
its been great reading this thread...i have had tn 1and2 for over 20 years it always starts in my ear and radiates down all branches of the nerve...i get the metallic taste in my mouth and swelling along the jaw and the gland under the jaw it gets so bad my jaw ceazes shut...they say i dont have tmj...had ultrasound of neck and jaw that showed nothing and camera up the nose...xrays and they have no idea what is goin on.waiting for more appointments at ear nose and throat ...wish i read this before all the unnecessary dental work...what can i say i think its connected...hope your all having a pain free holiday as i am...i feel lucky as its been cold and stormy for weeks and no flare...didnt feel so lucky suffering in the summer when it was lovely....topsy turvy year...happy xmas
dizzy, you mentioned nothing showing tmj.....I had xrays done 23 years ago that confirmed I had tmj. Then after I had a bridge put in and went to the dentist and they checked for tmj, 4 years ago they couldn't find anything. That was when TN first started.
I also have a bad shoulder and I over used it yet again last Thursday and have been in severe pain from the shoulder and the TMJ, I also have had glands come up on the bottom of my jaw line. Both of the pains are subsiding today.
I had better stop typing as I can feel it starting to burn. Better rest up for tomorrow, Christmas day with the family!!
Take care,
Merry Christmas everyone!!
I pray we all can enjoy it pain free!!
Cheryl,
dizzy said:
its been great reading this thread...i have had tn 1and2 for over 20 years it always starts in my ear and radiates down all branches of the nerve...i get the metallic taste in my mouth and swelling along the jaw and the gland under the jaw it gets so bad my jaw ceazes shut...they say i dont have tmj...had ultrasound of neck and jaw that showed nothing and camera up the nose...xrays and they have no idea what is goin on.waiting for more appointments at ear nose and throat ...wish i read this before all the unnecessary dental work...what can i say i think its connected...hope your all having a pain free holiday as i am...i feel lucky as its been cold and stormy for weeks and no flare...didnt feel so lucky suffering in the summer when it was lovely....topsy turvy year...happy xmas
i also get a bad shoulder....my accupuncturist says that tn is related to and caused by twisted hips..which i have and that puts the allignment of your whole body out i get pain in foot knee hip shoulder and she says my jaw goes out of line which i can feel but it seems to go out when i have pain and go straight when the pain subsides...she would argue that the pain comes when jaw goes out...the answer she says is to get the hips fixed but the chiro says they are unfixable worn the discs away on the bottom four vertebrae and they are starting to fuse...however she does good work straightening them but it never lasts...i have days when i wholeheartedly beleive her theory and wish i had gone to chiro when i was twenty instead of leaving it and soldiering on for many years as it could have been fixed back then and maybe i wouldnt be suffering now....so my advice to anyone with tn is to go to a good osteopath or chiropracter and get your back fixed just incase she is right wish i had cause now i think this could all be my own stupid fault for being a good little soldier and working through the back pain without complaining or whining abouting it and not getting it fixed...god i hate regrets and doubt happy new year to you all.xxx
Cheryl said:
dizzy, you mentioned nothing showing tmj.....I had xrays done 23 years ago that confirmed I had tmj. Then after I had a bridge put in and went to the dentist and they checked for tmj, 4 years ago they couldn't find anything. That was when TN first started.
I also have a bad shoulder and I over used it yet again last Thursday and have been in severe pain from the shoulder and the TMJ, I also have had glands come up on the bottom of my jaw line. Both of the pains are subsiding today.
I had better stop typing as I can feel it starting to burn. Better rest up for tomorrow, Christmas day with the family!!
Take care,
Merry Christmas everyone!!
I pray we all can enjoy it pain free!!
Cheryl,
dizzy said:
its been great reading this thread...i have had tn 1and2 for over 20 years it always starts in my ear and radiates down all branches of the nerve...i get the metallic taste in my mouth and swelling along the jaw and the gland under the jaw it gets so bad my jaw ceazes shut...they say i dont have tmj...had ultrasound of neck and jaw that showed nothing and camera up the nose...xrays and they have no idea what is goin on.waiting for more appointments at ear nose and throat ...wish i read this before all the unnecessary dental work...what can i say i think its connected...hope your all having a pain free holiday as i am...i feel lucky as its been cold and stormy for weeks and no flare...didnt feel so lucky suffering in the summer when it was lovely....topsy turvy year...happy xmas
Wow dizzy, that's exactly how it feels with my jaw, like it's out of place and it grinds and feels like a pair of pliers are sqeezing it, and I have to have a muscle relaxer for it to go back and pray it doesn't trigger the TN. I have Osteoarthritis and was told not to see a Chiropractor only a Physiotherapist. I sit in an office chair in my kitchen and I'm always worse when I've been out and have sat in a normal chair. I too have always had back pain and now my daughter has had back pain for awhile now and she's only 31, I should tell her about this possibility.
Swelling; Years ago my eye lids would swell up to the point of being in my vision but this was ignored by my eye doctor. When my face pain went turned unbearable and I finally started going to doctors to figure it out. The swelling was one of my weirdest complaints. It did not make it any better that the doctors were unable to see it. My family, friends and my self could see the entire side of my face, ear and neck was swollen. At this time my mouth swelled up so bad I could not close my mouth for two reasons, 1-teeth would not fit together, bottom front teeth pushing into top front teeth would cause more pain. It would get better if I could get good sleep, but it would start over each day and end with my mouth so swollen I had to hold my teeth apart because touching would set off the jolts of lightning through my face. I was eating and drinking thru a straw because chewing or talking would cause the swelling to be instant and pain to be instant. As time went on the muscles in my face turned ridged making the pain constant. Over more time the swelling moved to more of my face and when my TN went bilateral the other side began to swell just as the first side did. Last February I had my MVD and now the swelling is much better on the one side, but still present. I got supper stressed the other day and it was like a light switch, all of a sudden my mouth was swollen, I could not touch my teeth together for pain and misalignment. I also get a weird metallic taste in my mouth on that side with the swelling.
Ear Pain was a big complaint as well. I was misdiagnosed with ear infections, sinus infections, and "headaches may be from your acid reflux". Prior to my MVD the ear pain was so bad it hurt to listen to a clock on the wall. Any noise would be felt as jabs and jolts from my ear thru my face over to my nose. It ever hurt to breath. Now my ear bothers me more noticeable with congestion. So I treat it and my ear pain gets better. The headaches I have give me congestion in my sinuses and ears as an autonomic response.
We have what's called a Trigeminal vascular system that is tied to our Trigeminal nervous system. They do not play well in the sandbox together. Migraines are part of this system, as well as other TAC's trigeminal autonomic cephalgias. There is even stuff like Trigeminal autonomic reflux- meaning your TN is causing the vascular system to malfunction.
This is a non complete list of like Autonomic symptoms that go with TAC's
My face pain and headaches are like a merry-go-round. One can set off the other. But all is so much better after the MVD. I am not cured but able to function better.
I am not so Glad to know others have the swelling and ear pain. But it lets me know I am not crazy and the doctors have a lot to learn, so we patients must educate them or demand they do it them self's.
I have been put on Verapamil for headache maintaince. Its BP med. This is the first medication that has helped the swelling in my face. I use Indomethacin or Ibuprofen for breakthrough. I treat my Chronic paroxysmal Hemicrania, the ON and My TN different. But point is I have to treat all different because they respond to different meds or treatment.
This entire thread is so interesting and I am happily amazed at your neurologists interest and thoroughness. The left side of my face is slightly swollen and my left ear gets red and warm at times. Thanks for putting a name to it.
Bellalarke said:
The first time I met with my current neurologist two years ago she studied my face carefully without me knowing what she was looking for. She said the whole left side of my face was slightly swollen. Sometimes my ear still turns beet red if I have been overdoing it or eating sweets. So I do have autonomic problems as well as the deep compression that was decompressed.
So, in answer to the post, swelling can definitely be experienced with TN. Please find a doctor who knows what to look for.
Thanks for the link. For about a year now I do the lymph drain daily and it does help but doesn’t stop it from reoccurring. It was taught to me by a physical therapist and is a great thing for people with swelling. The only thing that helps the reoccurrence of daily swelling is keeping my nervous system calm by a simple stress-free life.