Hi there,
I thought I’d join a support group for TN; it seems the logical thing to do as I’m a sufferer. Really though, at the moment I’m at a very low point, I’m in constant pain in my ears, like indescribable pain, I sleep all day, I look and feel a mess, my diets suffering and I’m gonna smoke myself into an early grave if I’m not careful. My brain gives out a constant ringing sound as well. I react badly to the meds they prescribe. The world has become a dark lonely place.
chin up blighty,
i have been there i also get deep in my right ear sharp ochy pain but also had shingles in my ear to but i couldnt see them but the doctor could it was that bad i nearly got a knife and and stabed mayself in the head to stop the pain but then i thought wat the hell am i thinking i have so many things to pull me thru this pain i feel,we are all here for u when u need to talk ,seems bad at the time but u will get thru it we all do try do sumthing to take your mind off the pain like take a walk and pain is pain and will follow u were ever u go but u can take ur mind away to cope a lil better hope u feel better lots of love ur way =-)
Thanks for your kind words Tamina, yeah the ear thing is driving me crazy, more so as I used to enjoy making music.
you’re right I need to quit, but I’m in this vicious cycle of depression and smoking, sleeping all day…the pain is quite unbearable. I can’t put my ear near water, it sets of a reaction.
Ro ~ said:
Hi Simon,
There are others that seem to have the similar things as you. Maybe they can offer some of their experiences. I don’t want to curse myself saying my ears haven’t been that way for a lil while. I used a warmed wet cloth and layed on it or whichever way was comfortable. It helped a bit.
Did they suggest any surgery of sorts? Did they take tests like MRI’s MRA’s? If you smoke and your TN is bad, did they look for maybe an artery pinched?
And I’m sure your doc and neurologist said smoking isn’t good. it takes the oxygen from the brain.
Do I sound like a mom yet? ha!!
I’m starting to think in England, treatment is like a lottery, gamma knife has not even been given consideration, and to be honest I don’t think it’s an option available in my city. I can’t take amyltriptyline, nor can I take gabapentin…I ended up in hospital the last time I did with my eyes bulging out my head, not being able to go toilet etc. I don’t want to take anything that dulls my mind, as I’m a creative heady person.
Hi Simon,
I’m so sorry you are suffering. Maybe you will be able to find a medicine you can take or possibly have surgery. I see Ro asked you if you have had MRIs, etc. Please keep us up to date.
Liz K.