Hi Everyone,

My wife and I are curious to know if anyone who has AS on this forum also has any blood disorders or sleep apnea. I have both and have recently found two others who do too. Seeing as AS is fairly rare and have come across a few others I am curious as to whether any others out there have these problems too. Please let me know. Thanks,


Bob

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

I have sleep apnea. In fact it has beenone of my post surgical complications. It is at its worst if I sleep on my back and for some odd structural reason dissipate if I sleep on my right side which I cnnot do because of the surgery.

The bending of my spine due to AS plus an elongated uvula seem to bee the cause also I broke my nose as a teen in feeble efforts at football playing leaving me with a deviated septum. The trio seems to give me horrid snoring that stops my breathing and if I'm sleeping mandatorily on my back I awake after a couple of hours with a headache that is in all liklihood oxygen deprivation.

The joys of AS. Oh how I need to rollover ont my side and get a good ight's sleep of a solid 4-5 hours.

 
stevec-they also serve who stand and wait

Hi Steve, Have you had a sleep study done? I just had one the night before last and my oxygen levels were down to 87%. They placed me on a CPAP machine which blows room air into my nose while sleeping and I got THE BEST 4 hours sleep in years from using the machine. I will getting one for home in the next week or so and I can not wait!!!!!! If you havent had a study done, it is well worth it!!!!!!

Thanks for your reply!

Bob

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

Strange, a great deal of what Steve listed also applies to me. I also broke my nose as a kid and I have the same sleep problems. Every once in a while, Dorrit has to wake me up because my breathing gets pretty irregular and makes her think I have an obstruction in my air passages. And I snore whenever I lie on my back so Dorrit pounds me in the side to roll over which stops the snoring.

On the blood side, I have chronic anemia. I have had to take iron supplements ever since I was about 3 years old. I can't absorb iron unless I also have B-12 shots on a monthly basis. The shots are because I don't absorb B-12 naturally but I need it to absorb the iron. (hope that makes sense).

I don't think that the above would come under blood diseases but it is still a problem. If I don't take the iron and the B-12, I would get pretty run-down in a few short weeks.

George

Breb Assyl

Thanks George! I have what is called Polycythemia which is a form of myleoproliferative disease where I make too many red blood cells. My body tells me I am not getting enough oxygen so the marrow jumps in high gear making more blood cells to carry more oxygen. Primary polycythemia turns to leukemia in a short time frame and this is why I am wondering if other AS'ers have any type of blood related diseases too. Trying to find a common denominator if there is one.
Hopefully the CPAP machine will bring the O2 levels up enough at night that the blood will level off and marrow will not have to make so many cells. If not, its back to the drawing board and more tests.

Thanks again,
Bob

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

hey george, now I am curious about this anemia you got, does it act like one minute you are full of energy and the next you almost go to sleep standing up and feel exhausted most of the time. my latest blood test showed some form of anemia but doc didn't get into all that much....could you tell me more about these symptoms.....oak

I am older then I look and I feel older than I am

if apnea is like snoring than I aint got it...what I got is my breathing is so shallow that my wife or my in-laws during hunting season wake me up every few hours just to make sure I am still alive.....but since my whole family can sleep during an earthquake I aint to sure about the snoring thing.......oak

I am older then I look and I feel older than I am

Hey Oak,

You can have apnea without snoring. It is an obstruction of the airway or the body stops breathing, for some people over 60 times an hour!

Obstructive sleep apnea
Obstructive sleep apnea is characterized by repetitive pauses in breathing during sleep due to the obstruction and/or collapse of the upper airway (throat), usually accompanied by a reduction in blood oxygen saturation, and followed by an awakening to breathe. This is called an apnea event. Respiratory effort continues during the episodes of apnoea. An analogy might be helpful: OSA is like putting your hand over your vacuum cleaner intake nozzle. Your hand blocks all air from getting through (upper airway collapse) even though the vacuum cleaner is still applying suction (respiratory effort continues). The vacuum cleaner is usually straining somewhat at this time, and so does the human body.


Central Sleep Apnea
Central Sleep Apnea is defined as a neurological condition causing cessation of all respiratory effort during sleep, usually with decreases in blood oxygen saturation. To return to the vacuum cleaner analogy: central sleep apnoea would be like pulling the plug on the vacuum cleaner. No power, no suction: if the brainstem center controlling breathing shuts down there's no respiratory effort and no breathing. The person is aroused from sleep by an automatic breathing reflex, so may end up getting very little sleep at all.

Note that CSA, which is a neurogical disorder, is very different in cause than OSA, which is a physical blockage - though the effects are highly similar


Hope it helps!

Bob

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

Hi Oak,

No, my anemia cycle doesn't change as quickly as you posed in your question. Mine is more like a 6 week cycle and follows the same time interval as when I get my B-12 shots.

A couple of days after the B-12 shot (Dorrit refers to them as my superman shot), I start to feel like I have more energy again and this lasts for 3 to 4 weeks. Then I start to notice a slow decline in energy and general well-being over the next 2 weeks and so, back to the Doctor. I really should arrange with the Doc to get the shots every 4 weeks now but originally, every 6 weeks was just right.

I should have been clearer about what kind of anemai I have. It is called pernicious anemia. Some Doctors refer to it as Addisons's anemia. It is a specific type of anemia associated with the lack of acid in the stomach, inflammation of the tip of the tongue and nervous disorders, but not necessarily all three problems. My anemia has worsened since I had a series of stomach surgeries from 1964 to 1973. During the last stomach surgery, they did a vagotomy which is severing the vagus nerve to the stomach. That shut down the ability of my stomach to secrete acid as the start of the digestion process. Poor digestion, less assimilation and down goes the body weight.

Pernicious anemia responds well to treatment with liver and stomach extracts, Folic acid and B-12. I only take to Folic acid and the B-12. It may be worth a try if you can get the Doctor to test your blood, then get a B-12 shot and then another blood test several days later after the B-12 has had a chance to work. In the meantime, start taking folic acid and iron once a day. One tablet of each a day is fine, too much is no good.

Hope your Doctor is more help when you see him/her next.

George



Breb Assyl

Hi Bob,
It seems that AS and hereditary spherocytosis (HS) run in my family - and it seems that the same people get both the lovely diseases .
HS causes spherical shaped red blood cells which are then destroyed by the spleen. If there happens to be a time (usually stress induced) when lots of the funny shaped red blood cells are produced, it can lead to anemia. However, taking iron supplements doesn't really help too much, as there are not enough red blood cells to carry the iron. My Dr had always prescribed daily folic acid just to aid with the new production of cells, which of course, messes up my whole MTX routine.

Happy Holidays!
Megan

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

Hi Daniel,

Haemochromatosis can be detected by blood tests, specifically Transferrin Saturation (TS) (not just Serum Ferritin, which can be misleading , or misinterpreted)

In addition to this, there is a specific gene test (via blood testing) (90% of people with Haeomochromatosis are +ve for the gene)

As this condition can affect many organs, it would seem wise to be tested for it now, especially as you mention genetics. The may help to prevent or at least minimise some of the later potential effects, which include diabetes mellitus. You should check this out with your doc, she seems to be a proactive type, so would be interested in looking into this further.

Hope this helps,

Take care,

Jan

Thanks for the info Jan!
Bob

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

hey Bob, I think that next time I see my doc I will mention about my sleeping habits he is a good doc so he might have an idea....thanx for the info.....oak

I am older then I look and I feel older than I am

heya George, I have tried the iron pills already no noticable change but maybe a B-12 vitamin just might help. I will ask my doc next time I see him...thanx....oak

I am older then I look and I feel older than I am

Don't forget, you may not be able to absorb B-12 from a pill as is my problem. I need to have it injected monthly.

George

Breb Assyl

Hi Bob,

I was sent on a sleep study too, and they determined I have mild to moderate apnea,... but not enough to warrant any corrective measures. My SO has really bad (obstructive) apnea (no arthritis) and initially had an operation which was unhelpful. He started using a CPAP about 2 years ago, but doesn't feel the dramatic benefits you describe. It took about 6 months before he noticed an improvement in his overall fatigue level. He use to be so chronically sleep deprived that he'd nod off to sleep constantly in evenings but never into a nice deep sleep. Now if he skips a night with the machine he'll be noticeably more tired the next day.

Take care,

mig

Bob:

I snored loudly and ended up having a sleep study done just over three years ago. It demonstrated I definitely had sleep apnea, which because I'm relatively thin, my doctor recommended surgery. He corrected a deviated septum and at the same time removed my uvula and excess tissue at the back of my throat. I was in the hospital for one day and then spent a very uncomfortable week at home recovering. Bottom line: my wife sleeps much better now.

It cured the apnea and I now have a tendency to sleep through the night which I never did before. The best outcome of the surgery is that I've been a non-smoker for over three years now. My throat was so sore after the surgery and at the same time my nose was completely packed. The thought of smoking a cigarette under those circumstances was the farthest thing on my mind. Therefore, the morning of my surgery was the last time I smoked a cigarette and I was smoking over a pack a day.

PS - My older brother also suffered from sleep apnea and rather than the surgery, he went with a CPAP machine and has been using it for years now.

Also, I always test slightly anemic and have been taking an iron supplement which has helped keep me closer to "normal" readings.

Tom

Hi Mig,

Thaks for your response Mig! The four hours I was on the CPAP was incredible as I mentioned in my post above. I could not believe the difference it made in the quality of sleep. What I am hoping will happen is the amount of oxygen I am deprived during the night will be regained, and my bone marrow will stop producing extra blood cells that its doing now to carry more oxygen to the body.
I too take those evening naps probably 4-5 times a week for an hour or two. I hope your SO continues to get positive results with the machine. I have heard it takes people different time tables to get the full benefit from the CPAP and hopefully he get into a good pattern with excellent results.

Thanks again!

BOb

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

Hi Bob!

What sort of tests (presumably blood work?) or symptoms, enabled you to recognise that your bone marrow was producing extra blood cells for oxygen? I'm wondering if this is something that could happen under the radar to my bf ? And if so, how serious can this become?

Thanks for your post Bob,... it's always nice to hear and chat with others in similiar situations.

mig

Hi Mig,

I had a CBC blood test done as part of a regular checkup. It came back as my hemoglobin and hematocrit levels were high. This lead to a diagnosis of Polycythemia Vera. If it is true of primary polycythemia it usually turn into leukemia within 10-15 years and has a high mortality rate.
If it is secondary polycythemia, which means it is caused by something that can be fixed such as sleep apnea, where the body is not getting enough oxygen in the first place then, by changing lifestyles the marrow will slow down the process of making too much blood. People who live in high elevations have a higher hemoglobin and hematocrit level due to the air at that elevation does not contain as my oxygen as here towards ground level.
Currently in my case, they have NOT (just edited this post) done a bone marrow biopsy or a red cell mass test, but instead elected to try the sleep apnea fix first. If this does not solve the problem, then we are looking at the possibility of Primary Polycythemia.

As far as how i feel with this...I am dead tire all the time. My face feels flushed, I can see my pulse in my eyes (strange as that sounds), My heart rate is funky with missed beats and lapses in beats. It is difficult to breath, my blood pressure is sky high without meds, and when i bleed I bleed what looks like the thickness of motor oil instead of a thinner liquid. Risks of having untreated polycythemia is heart attacks, stroke from too thick of blood and others.
Quick fix to polycythemia is to have a pint or so of blood taken off every week or so until the hemo/hematocrit comes down to a normal level. The doctor I have now refuses to take off blood until we see what the CPAP machine will do for me. Meanwhile I have a river of motoroil going through me and it is pretty uncomfortable.
When I do have blood taken off, i feel so much better. I have a ton more energy, my heart mellows out, and I even think clearer.

I think I answered everything!! hahaha

Bob


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

Edited by Gimpy_As on 12/24/02 09:23 PM (server time).

LOL Tom, I am glad to hear your wife is sleeping better!! Gotta keep em happy ya know?? LOL.

We both wish we could quit smoking, but is sooooooo difficult to do. As far as surgery is concerned, this lad doesnt go under the knife unless it is a life or death situation. Having gone through ARDS, a kidney removal, 2 umbilical hernia fixes (one contracting MRSA, the antibiotic resistant infection) and being on a ventilator for a few months, the less contact I have with anesthesia the better off I am.

Thanks for your reply to this post!!

Bob

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

Blood stuff,
I get iron injections once a week. large shapeless red blood cells. My iron levels are all very low, they want to do a transfusion. I'm very week and have muscle spasams 24 hrs a day. they keep guessing this has been going on for 10 years. Remicade and Enbrel are next. I just wish they could get the iron up! no colon part of the problem! UC they cut it out. Well... peace Art

Hi Art,
My red blood cells are like that too - due to spherocytosis. Just curious, is that what you have, or do you have a different condition that causes that (I know you stated your lack of colon is PART of the problem)?
Another question - did your dr think it was safe being on MTX with this condition?
Thanks,
Megan

Hi Art,
Sorry, I didn't check - my mom had signed in and I didn't change the user! Posted as megansmom by accident.

Hi Megan or Mom? Mtx is ok with Doc. Please tell me what spherocytosis is. I need help in the blood biochem areas, not sure what they are. Thank you for leaving a note. Arthur

Hi Arthur,
Think I mentioned this in a previous post in this thread. And I have no idea if what I have is even remotely similar to what you have - you'll have to explain it to me!
As for the biochem, oh dear, you're asking the wrong girl, I didn't get such hot grades in biochem. Perhaps Strutsy (Jeanna) can help out there?

Spherocytosis is a genetic disorder in my family that causes exactly what you described - large, shapeless red blood cells, which in turn, can cause anemia. Because blood is filtered by the spleen, it recognizes these cells as "bad" and takes them all out along with the iron they carry (hence the iron injections). Some drs I've spoken to said that iron injections don't really help because there aren't enough red blood cells to carry it anyways, what I needed was more red blood cells, not iron. Unless I was seriously anemic, they said wouldn't start with iron injections. When the body produces too many of these round red blood cells, usually in times of stress or illness, sometimes a transfusion is warranted, otherwise we'd get pretty sick, pretty fast. Some doctors recommend spleenectomy in severe cases.
In my case, I've been lucky - my doctor had prescribed folic acid at a very early age to aide red blood cell production, and I'm supposed to be monitored carefully now that I'm on MTX. I'm also on prednisone, which seems to be prolonging the life of my red blood cells. I've never had any major problems, although many of my family members have (knock wood!)
I hope you're doing well, and that your health improves.
Happy Holidays,
Megan

Hi Bob - and thanks for the thorough answer! It definitely sounds like a condition that is best to avoid! I bet the CPAP will provide you with a measured improvement, and hopefully all that you will need,... crossing my fingers for you! It may take a bit of getting used to, and a few adjustments in pressure before you feel the full benefit. My friend doesn't suffer from these symptoms you describe, other than having high blood pressure on and off. I will tell him to mention the CBC blood test to his new doc just to be safe. Thanks again for all the info.

Wishing you the best and deepest of sleeps Bob!!

mig

Hi folks,

For those who are interested, I got some of my results from the sleep study today. They told me that I incurred breathing stopages 84.2 times per hour!! My oxygen level dropped to 84% at its lowest.

After the CPAP machine was hooked up I incurred ZERO breathing problems.

It is no wonder I dont get any rest having to wake myself that many times an hour to breath. This also causes me to never slip into the deep REM sleep where you get your quality sleep.
I get my home machine on Monday, and I CANT WAIT!!!!!!

Bob

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

84%? That's ridiculously low! And you stop beathing more than once a minute! Wow! Well, can't wait to hear about the machine when you get it -- this could be life changing! Post Tuesday morning and let us know?

PattY




Sunset, Dec 27th, 5:00, and 5:10 p.m.

Gorgeous sunset!

Cheryl

Sugar Magnolia wishes everyone a Happy New Year!