When the pain is unbearable during a TN1 "attack", when the pain is 9/10 and just unrelenting stabs/shocks..my question is do you feel additional pain in other areas? I would like to know if there are others that this TN1 attack pain affects other conditions/body parts?
For example I have TN1 & TN2 bilaterally + chest wall/ribs/sternal pain called Costochondritis, and it seems to join in when I am in TN attack..like my nerves are causing a connection..
I am sorry to hear of this…as if what is going on in and around your head was not enough to contend with!
While I cannot fathom what these additional symptoms must be like, I felt the need to comment anyway. Okay, so it’s not a particularly useful comment!
Yes, I get jolts that either start in my mouth and shoots down my throat and into my chest, or they all set off simultaneously. Sometimes it is just the throat/chest, sometimes I also get searing/stabbing in my armpits or elbows, plus "downstairs" (vulvodynia), but this is usually without face. I get ice pick headaches, too. I don't care if it has a name by this point, it's just all part of the fun. According to the neuro, I am just easily triggered because of the super-fun herpes virus, my favourite.
Most of these things are supposed to be affected by the carbamazepine or amitrytiline anyways., so it is just a matter of deep breaths and going with the ride for me. Wonder what I will be like when I am 50, haha. Probably looking like I'm being continually struck by lightning. :-)
Sometimes my right knee is sore and my whole body gets stiff, WOW, never had anything like this before!
Thankyou Penelope P, Tineline and Tam for your replies I really appreciate your comments xx
Penelope P, I know right! Sometimes I think I must have been a very bad person in a former life so this lifetime I get the whole lolly bag of pain ha! Thankyou for your kind words :)
Tineline I am sorry for your pain, I identify with the icepick headache it is ever present, I wake up with it in the morning..I hate to think what my face will be like in a few more years as it really has affected me in the past 4 years..
So being brave and putting a picture to my name, heres a photo of me before TN and more recently..my vanity is obsolete now lol...my mum says she sees pain in my eyes...
I'm chasing ideas and angles because I wonder if this is a precursor to something, is there a bigger picture? I have had all sorts of diagnosis thrown around but nothing definitive from Lupus to Osteoarthritis to MS and it would be wonderful yet depressing to put my "label" on something, a sad thing is I would welcome a name for this collection of problems, so I can better manage the pain. I have had the diagnosis of Fibromyalgia which is quite a broad term though.
I have tried so many different medications, had drug reactions, none of which even touch the pain when I am having an extreme episode of TN1. Yesterday I had an hour and half of excruciating thumping, stabs and it spread to my chest my entire front upper body felt the sharpness of it. When it came on I tried to stay calm and breathe through it..the last time I was out shopping and got taken to the local doctor and they did nothing except monitor me..so I am reluctant to seek medical help now as I know it will pass eventually, I just have to wait it out. I just feel anxious for when the next event will happen, planning around my episode is impossible I am sure you can relate...
Talking here with you lovely TNers who understand the seriousness of this pain does wonders for my positive thoughts, a big thankyou to all xx
Lately during an attack, I ache in my knees and sometimes neck spasms. Also have been wo dering about an itchy scalp (no dandruff or dry skin) I read that this can happen with TN. Any feedback on this?
Hi Barbara, thankyou for your reply. I have a tingling, creepy crawly scalp often, it is like my hair is standing on end kind of feeling, but on my scalp and walking upwards..I just want to scratch it! I have only had this since TN. You are not alone, it's a strange feeling!
We are all under some kind of magic spell, it seems. And mel77, no matter what you looked like before, you look beautiful now. :-) Well done for not hiding.
Tineline thankyou for your lovely kind comment you made my day already, I just woke up with a clanger headache :) I've been trying to attach the photo as my avatar without success, any tips?