Im a 35 yr old lady who started having this monster a yr ago last june…I was first told it was sinues and had my sinues done…I knew it wasnt my sinues due to the awful pain i had.I would wake up from my sleep screaming in pain.(Like someone was stabbing a knife in my left side of the head)My pain is in my left temple, face ears teeth and my left eye is closed half way.I was lucky to get into a pain doctor right away…(then the fun started) I had my injections in my face my temple and the back of my head.The pain would stay away for a day or two.I also had radio frequency surgery.in my c2 c3 c4 c5 and c6"once again the pain came back.I tried on so many med. that i cant even recall the ones i been on.Im tired and fustrated that im still dealing with this pain.I have blood test and MRIès and nothing showed up.Right now im taking Gatapentin 400 mg a day.Pain aint fully gone and wondering well it stop working like the rest i been taking.I noticed lately i have been getting tinkling on my left side of my head.Also feeling pins and needles in my head neck and shoulders.
This MONSTER effects my life cuz i aint the happy cheerful person i usually am.I work and a mom and god it hards some days.I wake up with this pain and go to bed with pain its awful…Its hard to talk to the people around me sometimes cuz no one really knows what this pain is like.
Hate to hear your having such a tough time with diagnosing this.
Missed my kids graduation from 5th grade last night as I was in such pain.
It seems like anything I want to do requires at least 48 hours notice to prepare
Sorry Rick That u missed the graduation…Hope ur having no or little pain today.Funny how this pain has a mine of its own and decides how we can live our life.
Hi Marina,
I’m glad you found this website. It has really helped me. You can get a lot of answers to your questions here and people understand and sympathize with what you are going through. Keep reading and finding answers. Good luck!!
Jamie
Still in pain today
Starts in my gum and then the twitching then the pain in front of my ear
gonna have to get my pain management doctor to put me on something thats time released
Hi Marina,
Welcome. I know you will find a lot of useful information on this site. I am sorry you are having so much pain. If we can help you or provide any more information about our experiences, just ask.
Liz
Hi Marina. I am a fellow Canadian. I just joined this site this week. I understand your pain and am sending positive thoughts your way for some pain free days. I was diagnosed with TN 2.5 years ago and am having a MVD in 2 weeks. Originally, I was told in the hospital that it was a sinus infection and was sent home with an antibiotic. My left eye felt like it was being electrocuted. Two more visits to the emergency room, left me feeling like it was all in my head because they couldn’t “see” anything and they told me I was wasting their time. Nice, huh? Anyway, I was finally diagnosed with TN at a different hospital. It took several concoctions of medications to get some pain relief (Tegretol; Gabapentin; and others that I can’t remember right now). That’s the other thing, I miss my mind. I am currently taking 1,600-1,800 mg. of Tegretol and for the most part have some relief. I take 400 mg. every 4 hrs. and heaven help me if I’m late by an hr. or more. Unfortunately, your Dr. may have to increase your dosage before you will have some full-time pain relief. It’s a long process.
Your symptoms are so similar to mine but I have only had ear pain a few times and thought it was connected to flying. I didn’t know it was a TN thing.
I am sorry you are having so much pain and hope that you can at least get some relief by sharing your story from those of us who understand your pain. I am surprised that you are still working. I am currently on LTD from work as I cannot work and am technically “impaired” due to the levels of medication I am on. Maybe you could check that out with your Dr?
Take care.
Bonnie
Sorry for the reply…Been a bad few days…Im going again to my doc next week and asking him to send me to someone else.Im tired of the pain and not getting ahead at all.I been on Gabapentin for a couple weeks now and im worst now then i have been in awhile…
As for me working its hard some days and my coworkers see when im in pain but i try and deal with it for now…