hello all -

i'm 26 and a newbie to the sleep apnea diagnosis.  frustrated b/c it took me WAY too long to find out the diagnosis but also fairly excited b/c it's something wherein i can be pretty optimistic about helpful treatment.  the doc who ordered the test didn't return my calls with results so i assumed they were nothing exciting and i didn't have an appt with a sleep doc set until feb but another doc saw the results (in the hospital computerized system) and was like "woah. no one called you? you really need to see someone sooner."  so despite the fact that he's a nephrologist he made a few calls and i have an appt with the sleep doc on friday.  i'm waiting for the report in the mail and/or will get the details at my appointment but he told me it said severe obstructive sleep apnea and desaturation.  i don't know the actual numbers yet (and am SO curious).  

i've had HORRIBLE fatigue that has only increased and have pretty severe and systemic dysautonomia (neuropathy, syncope, tachy/bradycardia, gastroparesis & GI dysmotility, neurogenic bladder, problems with temp regulation, etc) as well as cortisol, potassium,  & B12 deficiencies and ulcerative colitis (the one thing currently 100% under control).  i have to use a wheelchair for distances  as i can't stand for more than a few minutes; i can sit for about 4-5 hours on a "good" day.  yep, i know i'm a mess.  i had to stop working about a year ago but am taking grad classes part time and doing my work while laying down. i'm super stubborn & refuse to let my dysfunctional body win but am really hoping that the fact that my horrible sleep may have a fix will help overall; it's not going to fix me but good sleep certainly can't hurt anything. having lots of other reasons to explain poor sleep &/or fatigue (HR & BP issues, meds, poor nutrients, "stress" - no kidding!!) i'm relieved that someone finally ordered a test.  after i hestitated to try sleep meds i tried several that either did nothing or made me worse.  and did all the "sleep hygiene" i could to NO avail....now i know why and think i'll mail a copy of my sleep study to the original sleep doc i saw who told me he was almost certain nothing was really wrong and i simply had to teach my body to sleep again. er...more like breath perhaps???

i always slept soundly until last spring and then i had so much other going on medically that my goofy sleep was, sadly enough, the least of our worries. oddly enough my major issues with sleep started following gallbladder removal.  can surgery trigger something??  i haven't slept soundly through a night since my surgery & while some nights are better/worse than others i always wake up a lot; i never used to wake up during the night & was a VERY hard sleeper (i.e. sleeping through fire alarms & the like).
obviously i have thoughts/questions about the connection between my autonomic dysfunction & the apnea but i would have thought that would appear as more central rather than obstructive?  could my vomiting almost daily when my GI issues went nuts last winter/spring have caused something structural to be amiss? i have a cervical fusion but it was done in 2003 & i had no (noticable) sleep issues after that.  WAY too many pieces to try to fit together.....

i don't fit any of the "typical" apnea profile but i specialize in the atypical.  i'm no more than about 5 pounds overweight and when the sleep issues started i was about 30 pounds lighter; i don't have much say in my weight fluctuations due to my GI issues and various meds that (sort of) help me to function.  for me being 5 pounds over is MUCH healthier than the alternative than the rapid weight loss, vomiting, and almost exclusively liquid diet that i have to deal with then my GI issues are at their worse.  probably more details than anyone cares to know; i just will not have any tolerance for a doc telling me to lose a few pounds to help with the apnea.  i do have a fairly "large" neck for my size...as do my father and most of his side of the family.  they all snore (and no, they haven't been tested..i've been after my dad for years) though i do not and never have.

i've already been reading to educate myself on the new part of my medical mystery tour.  i'm new to this but not new to medical mazes.  i'd love any thoughts/suggestions/input before my appt with the doc on friday.  other than getting the report and the included details and pinning down the plan going forward is there anything else i should ask?

if you've made it this far, thanks for reading:-)
sorry for the lengthy ramblings....
  melissa


_________________
"I get up, I walk, I fall down. Meanwhile I keep dancing." HILLEL

www.dinet.org
www.ndrf.org

Hi Melissa and Welcome!!

You have one heck of a great attitude!!  I think you have done a really good job of educating yourself.  The only thing I would suggest is that you insist your doctor follows-up with you closely to ensure the apnea therapy is working.  He/she should see you back within a month after you begin therapy to monitor your progress.  Of course, we are here for you too!

I also informed an incompetent and arrogant doctor that he missed my severe apnea.  He gave me a lecture about how I was simply doing too much and I should get rid of my pets because they were taking too much time (right, 10 min/day).  It was most rewarding.

Being treated can only help you overall.  I too have high BP and arrhythmias (PACs specifically).  My CPAP helps me a lot.  Maybe, more restful sleep and normal oxygen levels throughout the night will help your other issues as well.

Keep us posted on your progress!!

Vicki


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That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

thanks vicki -
i try to keep the attitude up but - trust me - it does not always come through.  
thanks for your thoughts/suggestions.  i had my appt yesterday & posted more under the thread re: my actual test results.  ends up i don't actually have "severe" apnea through and through - only during REM sleep.  still hoping that treatment will at least help a bit though overall.  i'll take anything i can get.  glad to hear that it's been a good thing for you.  as long as it doesn't make my low blood pressure any lower! (i'm opposite from most in the BP realm...too low rather than too high).
i actually already got fitted for my mask & should be connecting with the DME folks this week about the machine.  then after using it on a low setting for a few weeks to get used to it i go back for the titration study. and then a phone consult with the doc after that re: settings and a follow-up appt 2 months later.  and what appears to be pretty ready access to the slep techs at the center (and doc if need be) at any time between then and the various steps of the plan.  after reading of many's not-so-good experiences on here i have to say that - thus far - i've been pretty impressed with the clinic's sleep center.  it "should" be good as it's a pretty big name place but i've had both good & bad experiences at "big name" places over the years so that's not always the case.  
the docs seemed a bit surprised that i was so willing about the machine since at 26 there may be lots of years ahead to use it, but i'm honestly psyched about anything that may help me feel even a bit better.  and i felt super prepared in talking with them, getting fitted by the tech, etc. thanks to all the great info on here & other forums i've been reading this week.  i've definitely learned the importance of being informed with all my other odd medical stuff.
anyway, though...thanks again for your suggestions & encouragement.  now i just have to be patient in waiting for my new addition to my DME collection. if someone walked into my apartment they'd think an old lady lived here!
  melissa


_________________
"I get up, I walk, I fall down. Meanwhile I keep dancing." HILLEL

www.dinet.org
www.ndrf.org