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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Sleep Specialist...Diagnosed as "Weird"
        
(Message started by: kimmeesue on Jul 28^th, 2005, 2:07am)

Title: Sleep Specialist...Diagnosed as "Weird"
Post by kimmeesue on Jul 28^th, 2005, 2:07am

Finally saw the sleep specialist today. A doctor with a sense of humor who was honest enough to say that he doesn't hold out much hope for curing my CH. But says my apnea is bad and my sleep problems not all respiratory related. For some reason I spontaneously arouse something like 80 times during the night.....in addition to the apnea. He says I also have "Ondines Curse" where I just forget to breath even when awake. And that I should be asleep on my feet, although I'm not. Even when exhausted I can't fall asleep during the day. And I have terrible restless leg syndrome (my husband can attest to that...guess I kick him pretty hard sometimes.)
Anyway, I get to have another stay awake all night while someone watches you study so they can titrate the CPAP. Joy! Joy!
The last thing the doctor said was "all I can say is You are weird"
Now I go back to my neuro to see if he has anything new in his bag of tricks as the hits are coming more frequently and harder and lasting longer. They practically have a room waiting for me at the ER. I could always weather the shorter hits but 4-5 hours is too much with no relief at all.
Newsweek has a special publication on health and science with nary a word about headaches (other than ads for migraine meds) DO they not take HA seriously?
ARRRGHHH!

Title: Re: Sleep Specialist...Diagnosed as "Weird&qu
Post by painfulnoodle on Jul 28^th, 2005, 3:43am

That's been the most frustrating part dealing with my doctor. He won't take my sleep deprevation seriously and offers me nothing.

Cycle has just started back and i'm out of Immitres injections. took last one tonite. have to travel out of town this weekend. hope i can find someone to write me a prescription.

Red

Title: Re: Sleep Specialist...Diagnosed as "Weird&qu
Post by lmarkins on Jul 28^th, 2005, 7:59am

Kimmeesue,
CPAP is great. It helps me get to REM faster.This is great during PFDN's. Also prevents the ticker from going KABOOOM. When I was in my 20's I began CPAP and a very close friend of mine also had OSA. He wouldn't look at CPAP. He's taking the dirt nap now, because OSA took em in his sleep at age 42. Also your family will thank you for letting them sleep. My wife worried so much that she would lay awake thinkng I'd stop breathing for good as I slept.

But when the Beast cometh, you know what that means. They come faster and more often for this buckaroo. Another downside is that you have the mask which puts pressure against an already painful face. Also waking to the beat of a different drum is a blast when your eyes pop open wide and you try to move it off your face and head. Eventually, I can't even wear the mask once the kip6 and above shows up. Absolutely hilarious.

I would never think of doing the sleep study while in a cycle. The results would be null for me as I would never get the proper air flow adjustment for my CPAP because the OSA is less prevalent. Gotta be able to maintain a certain REM level for proper accuracy, and in my case, it ain't happening. I hope it goes well for you.

Up to 3/day-5/nite now, raising to kip4's. Kip5's right around the corner. I wish I could predict this good in the stock market. The Shadow lurks constantly now. :'(

Title: Re: Sleep Specialist...Diagnosed as "Weird&qu
Post by mcf69 on Jul 28^th, 2005, 12:00pm

Interesting stuff Kim, Odine's curse huh?, just goes to show that a CH sufferer's brain is wired different than a "normal" persons. Did he mention any treatment for it?, I know that it is almost as rare as CH. At any rate make sure you get the proper treatment before you end up in a worse boat than having CH. Best of luck.

Title: Re: Sleep Specialist...Diagnosed as "Weird&qu
Post by vig on Jul 28^th, 2005, 3:05pm

on 07/28/05 at 02:07:29, kimmeesue wrote:

For some reason I spontaneously arouse something like 80 times during the night... ...ARRRGHHH!

come on over...
;;D
sorry, couldn't resist...

Title: Re: Sleep Specialist...Diagnosed as "Weird&qu
Post by Sandy_C on Jul 28^th, 2005, 3:08pm

on 07/28/05 at 02:07:29, kimmeesue wrote:

The last thing the doctor said was "all I can say is You are weird"

;;D Well, since Clusterheads comprise a huge minority of the headache world, I guess that makes us all weird! :-/

Title: Re: Sleep Specialist...Diagnosed as "Weird&am
Post by kimmeesue on Jul 28^th, 2005, 3:12pm

on 07/28/05 at 12:00:07, mcf69 wrote:

Did he mention any treatment for it?,.

I guess the CPAP will take care of the nighttime episodes and I'll just have to continue being mortally embarrassed when I suddenly snort. My family has always thought it was funny...had no idea it was anything serious.

Title: Re: Sleep Specialist...Diagnosed as "Weird&am
Post by mcf69 on Jul 28^th, 2005, 4:51pm

on 07/28/05 at 15:12:29, kimmeesue wrote:

Sounds like central apnea while you're sleeping, the daytime episodes are interesting though. Just curious, have you ever had a head/spinal injury?, Odine's Curse usually only shows up in adults after some kind of trauma that occurs to the nervous system that controls respiration, except in a very few rare cases, which you may be one. Like I've said before, give the CPAP a good try, I think it's really going to help you alot by the sounds of it. As for the restless leg syndrome, you may just have to get hubby some shin guards..... :)

Title: Re: Sleep Specialist...Diagnosed as "Weird&am
Post by kimmeesue on Jul 28^th, 2005, 4:58pm

on 07/28/05 at 15:05:55, vig wrote:

come on over...
;;D
sorry, couldn't resist...

Ho! HO! My husband only wishes that were the case. Hell, I wish that were the case. Make this pitiful cluster existance a little more, uh, exciting.