Growing old with facial neuralgias?

Hi all. I haven’t posted for a while as I’ve been trying out some steroid injections. They r helping with pain but I still get break through pain and when at work find coping exhausting. I am a 37 year old single mum of two and I find more and more that I consider how will I cope as I get older with this? I feel in a real rut. I cannot lay comfortably tonight, my brain won’t rest. Work begins again next week and I can’t imagine how I’ll cope. When faced with a future full of pain what does anyone else do?

I guess the patches aren’t helping enough… Are you candidate for MVD.? I’ve forgotten if that is available for you…do you have narcotic to use for worst pain days?

Hello kc. Long time no speak! Yes patches are OK for the aches but for the sudden attacks not so much. I take tramadol on nighs like this. The neurologist didn’t feel I was a candidate for surgery though I am pushing to see a surgeon next time. How are u doing? X

I feel your pain and frustration. I’m a single mom also. I have 4 children 1at home still. I’m 43 lost my job had to move in with family. I offen wonder how can I do this for the next 40-50 yrs?
Mine started 3 yrs ago. I also feel like my 2 younger children missed out on so much because of the pain. I don’t know how you teach(is that right?).
I wish I had answers for you. I did the steroid injections for 2.5yrs. I got a spinal cord stimulator placed in July. It have taken about 60% of burning away. I still have awful days of pain, numbness and burning.
My heart breaks for you because I know what your thinking and how your feeling.

I am at year 2+ after MVD - I hate to say this sometimes, but I had a 1% pain on New Years Eve, and today on my birthday.... but way out of range for pills or patches.... I just want to give home, not brag! Keep pushing for what you want!

Exactly what was the Dr. saying - WHY you were not a candidate?

Well kc he said my symptoms were too random! I was complaining of pain in all areas of the right hand side of my face neck and head. He said if u were me where would u operate?!! He suggested it was psychological!!! I was furious. Started a pain diary and demanded to see a surgeon as this man is obviously a complete baffoon.

Stephanie I have no idea how I teach to be truthful. By the end of last year I was a total wreck. This year. I’ve been given a smaller class in the special needs department which I love. I’m so committed to my work but this is a horrid disability. I’m fighting tooth and nail to stay in work and at the moment its OK but steroids don’t fix the problem and tn is progressive as we all know. Keep positive Stephanie. Much love Helen xx



Kc Dancer Kc said:

I am at year 2+ after MVD - I hate to say this sometimes, but I had a 1% pain on New Years Eve, and today on my birthday.... but way out of range for pills or patches.... I just want to give home, not brag! Keep pushing for what you want!

WANT TO GIVE HOPE...NOT HOME. ,LOL

Exactly what was the Dr. saying - WHY you were not a candidate?

Yes the steroids didn’t help me either. I loved the lidocaine though lol it last for about 8 hrs.
I really hope you find something that works.