sleep apnea

[caroline]

For many years now I have presumed that my fatigue was the result of my HCM, diabetes and Tethered spinal cord. I've known people with sleep apnea and thought possibly I had that problem, but no health professional ever mentioned it to me as a possibility. The last 6 months my sleepiness hit a new high and I started to be afraid of falling asleep while driving. I checked out sleep apnea, found a local sleep lab and told my GP to prescribe it before I had a serious accident.

I had the test, it turns out I am very far along on the apnea progression. I will be getting CPAP therapy very soon, which is a sleep mask that blows pressurized air into your nose and mouth to maintain an open passageway to the lungs through the night.

Frankly, as I learn about apnea, I am rather shocked that the 5 cardiologists I've consulted for my HCM never mentioned a sleep study would be a good thing to have done. I am am obvious candidate for those kinds of issues-----I am certain that there may be a good number of you who are tired all the time and overweight because apnea is further complicating your HCM.

When I consider that possibly my last 10 years could have been even slightly better with this therapy I feel cheated out of an opportunity to have gotten more out of my time here on earth-----------

I'd be interested if any of you have apnea and what your experiences have been with trying to improve the quality of your sleep---------

[krislawrence07]

Amazingly enough...

I've had the same problems. (with the sleep) However I've done the CPat therapy, and it didn't make easier to sleep. I had to go home and sleep the rest of the day. I hope yours turns out better than mine!!

[tyreke28]

I was diagnosed with sleep apnea in october 2007 and I am on CPAP therapy and it has helped tremendously. The thought was that it would improve with weight loss, but my last study indicated that my pressure needs to be increased after I lost 30+ lbs. Hopefully with a loss of 50+ lbs more things will get better. I sleep very good compared to before. I sleep 7-8 hours straight where before I slept no more than 3-4 hours at night and cat napped all day long.

I hope that you find a solution for your situation.

;)

[Pam Alexson]

My physician would not believe that I felt I had sleep apnea back in 2000. I told him that for several years I had been waking up choking and gasping for air, that I could barely function during the day, falling a sleep at the wheel also and that my children said I snored like a grizzly bear hybernating in a cave. I also told him that my brother was dx'd sleep apnea by testing and my dad who has never been tested stops breathing and wakes up choking and has had several small strokes.
He ultimately agreed and sent me for the test but said it was ABSOLUTELY impossible for me to actually be the one that is aware of my own sleep apnea...the test revealed that I stop breathing 70 x's an hour with O2 sat levels as low as 80%. Putting me in the SEVERE sleep apnea category, THAT doctor was ABSOLUTELY wrong! After a year on C-pap and not doing all that better, I had to have another test and was placed on Bi-pap with higher settings. The Bi-pap allows a pause to exhale for those with pulmonary resistance like COPD. It works perfect and I would never leave for the hospital or anywhere that I could possibly be separated for even a night w/out my Bi-pap. Absolutely unable to sleep w/out it even after a very substantial weight loss.

My advise to anyone... if you have symptoms, persist and get the evaluation.. sleep apnea is as you know very damaging and dangerous to ones health.

Like many of you with HCM not identified and not treated early, my HOCM , my diabetes, my CHF, COPD,and my sleep apnea went undiagnosed, untreated and allowed to do its harm.

Advocate for yourself ASAP if you are having issues that you suspect are causing a negative impact on your health.

Pam

[caroline]

Pam---

Your Doctor does not sound like much of a diagnostician!!!! A sleep test is not that big a deal compared to the tests for the heart that we've all had. It seems like everyone with HCM should at least be talked to about the possibility that apnea may be complicating things----------

I went for the CPAP sleep test and found that I could not sleep at all. The straps on your face have to be so tight to maintain pressure!! But once they established the proper pressure, I could simply lie there and relax some, which gave me some hope that eventually this therapy will succeed.

I have a tethered spinal cord, which means constant pressure kept me from attaining my correct height. I am at least 2 inches shorter than I should be. A lot of this compression is in my neck, which I think predisposes me to sleep apnea. When I was a child, they took out my tonsils when I was 4 because of my astounding snoring---My tonsils grew back, and so did my snoring------ So it is all nothing new with me, it's just escalated to a new level------

Pam---when you achieved the proper therapy and lost weight, did your diabetes improve? I have diabetes as well. For years I have told my diabetes Dr. that I'm too exhausted to lose weight---- needless to say, he didn't believe me.

Caroline

[Pam Alexson]

Oh yes Caroline ..I fired those idiots years ago when none of them could get the big picture. Thankfully I see excellent doctors now who realize that when I say there is a problem ..they listen and take action.

I actually had gastric by- pass surgery and that does put ones diabetes in check. Because they took out a large portion of the small intestine during the surgery it really does make the absorption of large amounts of sugars/ carbs impossible. Actually all nutrients are poorly absorbed so it also has many shortcomings in that way. My A1c's are normal. It has been 4 1/2 years and I have not needed any anti-diabetic medication for the whole time right from post -op. It is funny I can eat small amounts of sugar, very small amounts and that is more then enough but, have actually developed a distaste for things like cake and most sweets including ice cream..they actually will make a gastric by-pass patient so sick that it is a great way to swear them off completely. For diverse reasons it was a good surgery in someways and most challenging in others. I think that HCM people are difficult to measure in the general population of people who have gastric by-pass. Mine was done because of already existing issues w/ my colon and to lessen the burden on my very stiff heart. Those areas of issue have been achieved others have developed.

Pam

[caroline]

pam

I am so glad you have suceeded in finding answers to these medical problems. Sometimes it seems like there is always something else, isn't there?

I must admit, I don't feel all that positive about myself.

I can't sleep on my right side because I just had shoulder surgery. I can't sleep on my left side because of shoulder impignement and HCM. I damaged my neck a long time ago in a bathtub fall. I can't sleep on my stomach because of that and I have an ostomy bag. AND I can't sleep for very long on my back because I have a tethered spinal cord and lack the protective layer around it. Lying on it heats it up and gives me electric shocks----so things are basically impossible before you look at the sleep apnea anyway----

Oh yeah---let's just throw CPAP in on top of all this misery-----