Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Blood diseases an apnea anyone?

Hey Bob,

Would you mind telling me what a sleep study is all about? Do you get wired up to any recording device?

I don't do well in many types of studies as my mind starts working on ways to influence whatever type of machine I am being monitoring by. I wouldn't be able to sleep during a session like this.

I am curious about the kind of sleep that you normally have and how many hours per day. For the last couple of years, I go to bed at about 11:00 pm and always seem to wake up at 3:30 am so I get up and walk around the house, maybe make a cup of tea and then back to bed by 4:30 am.. Then I'm up again at 7:00am. Average sleep per night is six and a half hours but sometimes only five hours.

This seems to be enough sleep for me but I wouldn't be able to tell if it isn't.

George

Breb Assyl

Hi George,

I have only had one study done and that was a few nights ago. I arrived there at 9:45 pm into a nice hotel type room at the sleep center. They hooked wires to my cheeks, the top of my head, behind my ears one to my chest and two to my lower legs. There were two bands that were placed one on my chest and the other my abdomen. A nasal canula was then attached which was used to record air volume during my breathing. There was no oxygen or room air coming from this. The last item was an O2 pulse ox finger clip which was taped onto my finger.

I went to sleep at about 10:00 tossing a bit getting used to all the wires. I woke up at 11:45 having to use the restroom in which they disconnected one plug and everythign stayed attached to my body. I felt as if I had gotten no sleep whatso ever for that hour and a half, but did get to sleep, but I did not reach REM (rapid eye movement) sleep which from what I understand is the deep quality sleep where you dream.

I awoke again at 1:00am requesting to sleep the rest of the night in a recliner as this is what is most comfortable to me. The tech told me that my oxygen levels were low and they were going to try the CPAP machine to see if that helped. This machine uses positive air pressure keeping your airway open during sleep. It took me just a few minutes to get used this strapped to my head covering my nose. The next thing I knew they were waking me up at 5:00am saying the test was complete. That 4 hours sleep after having the CPAP placed was THE BEST sleep I have had in years. For the first time in I dont know how long, I woke up without a groggy, hangover, fuzzy headed feeling and it FELT GREAT!!!!! I cant wait to get my machine here at home. What a difference it made!!!!!

The whole experience was fine. Not too uncomfortable for me. They expect you not to sleep as you do at home and I believe the testing accomodates for this. It truly is amazing.

The technician who monitors you through the night is in another area of the building watching the monitors keeping track of 02 levels, heart rythyms, eye movement during sleep and whatever else they monitor. There is a camera and infra-red light which you do not see in the room which lets them see you in the dark. There is a voice box on the wall where if you need anything you just talk normal and they can hear you.

Let me know if you have any questions!


Bob

Beauty is in the eye of the beholder. Behold the beauty of Orca Art

George,

As far as my normal sleep pattern is concerned, I do not have a normal pattern. One day I will get 2 hours sleep at night, and nap twice during the day. The next day I will 5 or 6 hours and no naps. All depends on how my body feels with the AS, and with heart palpitations I get from making too much blood. It feels as if my heart is going to come through my chest when I lay down, then it stops beating a few seconds then goes haywire with 5-6 rapid beats. Knocks the stuffin right out of me. I get whatever sleep I can get when I can which is a bad way of doing it. I need to get into a set routine but it is very hard to do. I usually work on my artwork at night when there is no glare from outside light and have fallen into the habit of staying up late to do my art.
As an average I get about 4 hours of semi good sleep a day with a few snoozes in the chair in between.

Bob

Beauty is in the eye of the beholder. Behold the beauty of Orca Art

Has your Doctor sent you for an echocardiogram to take a good look at your heart and especially your heart valves?

For several years, my mitral valves have been getting noisier and noisier and I was getting a test every 6 months. Early this year, I was put up to the more severe category and soon after, started having bouts of arrythmia which are similar to what you describe. Every time it happened, I would momentarily gasp for air and then the heart rythym would right itself. At times though, I would sometimes find myself on the floor on my knees, wondering why I was down there. It all happened so fast.

A few months ago, the Cardiologist put me on Dijoxin (digitalis clone) and since then, no more arrythmia. Check with your Doctor, some fairly cheappills could make a difference for you.

George

Breb Assyl

Thanks for the details Bob, quite an experience. If sleeping becomes more of a problem for me, I will give this a shot. (not that I like being watched while I sleep).

Did they serve you breakfast before you went home???

George

Breb Assyl

My heart got so bad one night I thought for sure i was having an attack. Nauseated, sweats the whole thing except pain. Felt like an elephant was sitting on my chest. Went to the ER, they gave me nitro, admitted me and the following day I had a stress test which came out normal. There was no heart attack and no damage to the heart. The cardiologist said that these skipped beats and poundings are the norm for a lot of people and it doesnt cause damage and I would get used to it.

Now...heres the kicker....when my blood levels get high (hemoglobin and hematocrit) I feel like garbage and the heart gets worse. What happens with this the blood gets so thick its like motor oil going through my veins making the heart work harder. You would think that all my IDIOT doctors would do something about it but they wont. So now hopefully the CPAP machine will take care of the problem for me. I am half tempted to donate blood since all the "professionals" seem to think I dont have a blood "disease" but my smoking and perhaps the apnea is causing it. The only problem I have with giving blood is what if I truly did have a blood disorder???? I couldnt live withmyself knowing I passed this on to someone else. Of course I do not know if it would do anything to them, but still.

I am taking Tenormin which is supposed to settle the heart a bit...I dont notice any difference though.

Bob


Beauty is in the eye of the beholder. Behold the beauty of Orca Art

LOL no....no breakfast the next morning. I did manage to get a couple cans of sprite out of them tho!! hahahaha


Bob

Beauty is in the eye of the beholder. Behold the beauty of Orca Art

Hi Bob,

I recall a post a while back that discussed the blood disorder, which runs in my family on the same side of the family as I got AS from, called Hemochromitosis (please forgive the probable misspelling). I am unsure if I have it or not as I believe the signs show up later in life (around 40-50 if I am not mistaken. This is all from off the top of my head, so. . .) It is a disorder where the blood cannot get rid of excess iron. I know that there were at least a few KAers who had this.

I do not, however, have sleep apnea.

I will be interested to see the responsese to this thread as I have seen and explored many trends among people with AS here on KA that are not mentioned in any medical textbook or known to any Rhumie or person in the medical establishment.


http://www.power-over-pain.org

Take care my friend

Daniel

Perhaps if we get a large enough response from folks who have blood disorders from here that this info could be used somewhere for research. Never know. Thanks Dan for reading and commenting here!! I will look into the hemochrom.....how ever ya spell it and let you know what i find out.

Thanks,
BOb

Beauty is in the eye of the beholder. Behold the beauty of Orca Art

Hi Megan,

Thanks for responding to this. I am going to do a little research on what you posted to see if it is part of any myleoproliferative disorders.

Happy Holidays to you too!

Bob

Beauty is in the eye of the beholder. Behold the beauty of Orca Art