01-26-2015, 06:55 PM
Feeling a little low- 30 days in.
Greetings Fellow Hoseheads,
I'm feeling a little low today. I expect that it isn't uncommon to have sort of an anti-climactic phase after the initial boost of encouragement and initial hint of feeling better.
I think what is getting to me is this. I've had Trigeminal Neuralgia (it used to be called Tic Douloureux) that affects the nerve just to the right side of my nose, on and off for years. It was initially treated with Carbamazepine (generic of Tegretol sp?) That is an epilepsy drug that even many epileptics refuse to stay on. It worked, in that it took away my T.N, but it left me tired, often sleeping 16-20 hours for days on end, nearly unwakeable by husband etc. In time I seemed to adapt to it "okay" and those periods would be rare. Now I know that perhaps the apnea complicated things there too. So a double "sludge through mud" wammy feeling wise.
A couple years ago, knowing that T.N often occurs and disappears for seasons of one's life, I weaned myself off the Carbamazepine to see if I still suffered from T.N. To my delight, it had passed and I was free of that pain for the last couple years. I'm guessing you know where this is going...
Well a few days ago, I woke with the slightest hint of that nerve feeling irritated but it went away as the day went on. Today, I woke with more of a strong suggestion vs hint, of it.
I am slightly encouraged that there exists a "total face mask" though apparently it can be hard to get fit just so. that might be an option.
I hate to face being returned to living on Carbemazepine, but as C-pap is here to stay (at least for the foreseable future) I may not have a choice.
I wonder if I was able to get a mask that didn't touch that are of my face at all, would I be able to have the best of both worlds. I also wonder if I will in the meantime with the mask I have, irritate the nerve to the point where it comes back with a vengeance and stays.
I've searched the boards and not found anyone else who has dealt with this, though surely others have. I found one person's post who thought they "'might have" T.N but that's it.
I might possibly be able to do a full face mask as it sits further out than my particular hot spot, but as the nerve lives from the side of nose out to under the ear somewhere, I'm thinking even though my pain isn't out that far, probably not a good idea to sit on the nerve path.
I'll ask my Sleep doc to send me to a neurologist to oversee the meds. In the past G.P's have done so, but having c-pap and T.N I want someone who might know of newer better ways to manage the pain.
Meanwhile, sleep doc had said 5 weeks ago, very laid back as he is, which I LOVE, So I'll want to see you, say maybe late January, early February. I just got to calling back to see about an appointment, stupidly thinking I could probably get one in 4 weeks or so max. Well they are booking for JUNE right now.Thankfully I was found a cancellation for April 1st...meanwihle They said they'd ask him about squeezing me in sooner. Boy do I feel dumb.
They have been flooded as the University of California went with Anthem Blue Cross which covers medicare as well, and I'm told they are flooded.
If anyone has any bright ideas, crazy ideas, funny ideas, I'm all ears!
Susan in a slump in San Francisco
I'm feeling a little low today. I expect that it isn't uncommon to have sort of an anti-climactic phase after the initial boost of encouragement and initial hint of feeling better.
I think what is getting to me is this. I've had Trigeminal Neuralgia (it used to be called Tic Douloureux) that affects the nerve just to the right side of my nose, on and off for years. It was initially treated with Carbamazepine (generic of Tegretol sp?) That is an epilepsy drug that even many epileptics refuse to stay on. It worked, in that it took away my T.N, but it left me tired, often sleeping 16-20 hours for days on end, nearly unwakeable by husband etc. In time I seemed to adapt to it "okay" and those periods would be rare. Now I know that perhaps the apnea complicated things there too. So a double "sludge through mud" wammy feeling wise.
A couple years ago, knowing that T.N often occurs and disappears for seasons of one's life, I weaned myself off the Carbamazepine to see if I still suffered from T.N. To my delight, it had passed and I was free of that pain for the last couple years. I'm guessing you know where this is going...
Well a few days ago, I woke with the slightest hint of that nerve feeling irritated but it went away as the day went on. Today, I woke with more of a strong suggestion vs hint, of it.
I am slightly encouraged that there exists a "total face mask" though apparently it can be hard to get fit just so. that might be an option.
I hate to face being returned to living on Carbemazepine, but as C-pap is here to stay (at least for the foreseable future) I may not have a choice.
I wonder if I was able to get a mask that didn't touch that are of my face at all, would I be able to have the best of both worlds. I also wonder if I will in the meantime with the mask I have, irritate the nerve to the point where it comes back with a vengeance and stays.
I've searched the boards and not found anyone else who has dealt with this, though surely others have. I found one person's post who thought they "'might have" T.N but that's it.
I might possibly be able to do a full face mask as it sits further out than my particular hot spot, but as the nerve lives from the side of nose out to under the ear somewhere, I'm thinking even though my pain isn't out that far, probably not a good idea to sit on the nerve path.
I'll ask my Sleep doc to send me to a neurologist to oversee the meds. In the past G.P's have done so, but having c-pap and T.N I want someone who might know of newer better ways to manage the pain.
Meanwhile, sleep doc had said 5 weeks ago, very laid back as he is, which I LOVE, So I'll want to see you, say maybe late January, early February. I just got to calling back to see about an appointment, stupidly thinking I could probably get one in 4 weeks or so max. Well they are booking for JUNE right now.Thankfully I was found a cancellation for April 1st...meanwihle They said they'd ask him about squeezing me in sooner. Boy do I feel dumb.
They have been flooded as the University of California went with Anthem Blue Cross which covers medicare as well, and I'm told they are flooded.
If anyone has any bright ideas, crazy ideas, funny ideas, I'm all ears!
Susan in a slump in San Francisco
and I don't have to worry about shoveling - I love my garage! 
