Hi, my name is Donna, I was diagnosed in 2008 with TN. My doctor at the time was next to useless. I was put on all the usual medications, Tegratol, gabapentin, pregabalin and tramadol. I have numerous nerve blocks and even had the nerve in my face cut but still was in horrific pain. I lost count how many times I just wanted to die so the pain would stop. 6 yrs after the TN diagnosis I was eventually sent to a neurologist. He straight away said that I didn’t have TN. I was given a coarse of Indomethacin and for the first time I could function. I was then correctly diagnosed with Hemicrania Continua. It affects the left side of my head and face. For the most part the indo does work but the breakthru pain is chronic. So here I am 12 yrs on and a shell of my former self. I cant keep a job as I have no idea when the breakthru pain will strike or how long it will last for.
I relate to the pain and the job situation too. I am sorry for anyone with this pain. I just don’t get it.
Wanted to say welcome to the forum, as well as I am sorry about what you are going through with the pain and being unable to work. I consider myself lucky to be able to work, but it does wear me down.
I just want to ask what country do you live in?
And what kind of doctor cut the nerve?
How long after the nerve cut did you see a neurologist?
This is crazy crap
Sorry-but this is bizarre
Sounds like a third world country but might be Canada.
Things are getting pretty bizarre here too.
I suggest you try and figure out a way of starting your own business.
That way you have more control over the pain when it comes.Nothing worse than sitting around ,feeling great,and no money coming in.
Things are changing with Covid.
Maybe there might be some help starting an online business?
Crazy
I live in the UK. Doctors here are not up on facial pain disorders. I had the nerve cut by a pain specialist and it was about 2 yrs before I saw the neurologist. Most doctors now still have no idea about Hemicrania Continua.
Hi
That is so strange.
No one should be cutting a nerve but a neurologist.
But I get it.I live in Canada and they have denied me access to our pain specialist group in Toronto because they say I have tried everything already.And that group has a facial pain specialist.
And I have not tried everything already.It is so frustrating.
England .Similar type of medicare as in Canada.
I am so sorry that happened to you.I am sure the neurologist was not too happy about it .I hope they followed up and made complaints with the proper medical place before another person gets a nerve cut.Honestly,would they pull out an eye because they think you have eye cancer?
No
They would send you to a specialist.
Cutting a nerve is not something that they can re-stitch laterFirst you see the neurologist and then the guesses start.
4 years on and still no diagnosis with me.Seeing a chiropractor now who co-wrote a paper on trigeminal neuropathic pain.
I am glad they figured it out with you.
I will ask the chiro if he has heard of it when I see him tomorrrow.Hemicrania Continua.