By Sue C. on Monday, June 05, 2000 - 04:57 pm:

Has anyone tried:
CPAP
oral devices
special pillows
dental work
surgery
other methods?

By Judy on Monday, June 05, 2000 - 04:58 pm:

A very small item in an EDNF newsletter posed the question of sleep apnea in EDSers. This doctor had found subtle evidence of sleep apnea in patients. She
evidenly runs a sleep study clinic. My mother who has sleep apnea developed congestive heart failure from it, so I think it would be wise to check into the sleep
problem. There are many kinds of sleep apnea and central sleep apnea that causes CHF is only one of them. Also, I believe the sleep apnea can cause the
fibromyalgia. I hope this helps. Judy

By Pat on Monday, June 05, 2000 - 04:58 pm:

Have you been told your snoring is due to
hm or related? I'd like to know. Also are
you thin, normal weight or heavy? i was told
severe snoring and apnea is caused by excessive
weight. Thanks

By Gwen on Monday, June 05, 2000 - 04:58 pm:

I read somewhere that if you tape a small ball against your back it will stop you sleeping on your back which is when most people usually smore as their epiglottis
drops and blocks the air passage. Sometimes people who suffer from sleep apnoea snore. What is your quality of sleep like? Do you wake with a headache, feeling
dozy etc? If so you may not be getting enough oxygen at night. If you have always snored it may pay to get your doctor to check out your throat. If that's not a
problem there are also little devices you can get that you put on the outside of your nose and they hold open your nostrils.

By Dawn S. on Monday, February 25, 2002 - 02:39 pm:

Is sleep apnea the only sleep disturbance experienced by people w/ HMS/EDS Hypermobile type? I was just recently diagnosed at age 40 with "severe sleep apnea". I snored loudly from the time I was a baby and snore much louder now. I had my tonsils and adnoids (sp?) removed when I was 4 yrs old for chronic tonsillitis, but still have an elongated soft palate, a deviated septum, excessive tissue at the base of my tongue that my ear,nose, and throat doctor says fills half of the normal airway area and I'm overweight-a quadruple whammy for causing sleep apnea. I had a sleep study done about 10 yrs ago and the determination was that although I "snore very, very loudly", I only had 5 apnic events over the course of the test, so a little sleep apnea, but nothing so bad that the insurance company would be obligated to treat me. The doctor said I had very unusual sleep patterns though. I technically was waking up almost all night long although I had no memory of that. I never went into deep sleep at all and had both the common brain wave patterns for asleep and awake at the same times I was supposedly waking up. Fast forward 10 years- I am tired all the time. My snoring has gotten much worse in the last 6-8 months according to my husband and I found out when my husband filled out the sleep study questionaire that I have periods during sleep where i am not breathing, have been gasping for air, yelling out at night, etc. Three weeks ago I had a 2nd sleep study where they found I had 55 "apnic events" an hour and they would last for 20-30 seconds each and my blood oxygen level got down to 76%. I had the same unusual awake/asleep brain wave patterns at the same time I was supposedly waking up. I went in for a 3rd sleep study 2 weeks after the 2nd one and slept with and was fitted for a CPAP machine. I felt pretty rested for the 1st time in years the morning after that sleep study with the CPAP. I am going to be picking one up in a couple days and will have surgery for the deviated septum on March 1st. Even after getting the CPAP cranked up to the proper pressure to prevent the apnea, I still was waking up every couple minutes according to the test results with the same awake/asleep brain wave patterns at the same time. My mom, sister, niece and daughter all have EDS/hypermobile type and although my mom and sister do not snore or have apnea, my niece (age 6) and daughter (age 4 and skinny as a rail) both snore periodically... If I can do something about my daughter's sleep disturbances now, before she ends up needing a machine to sleep for the rest of her life, like I will, I'd like to do that... Does anyone know what kinds of sleep disturbances are common in people with HMS/EDS hypermobile type? I read where sleep disturbances are common, but don't recall seeing what kind of disturbances they were...Please help if you know where I can find any information on that...Thanks. Dawn

By bree on Monday, February 25, 2002 - 04:06 pm:

Hi Dawn,
I've got huge troubles with sleep as well. I have a lot of trouble getting to sleep, and staying asleep. As far as I know I don't have sleep apnea per se, but I stop breathing / wake up from asthma. I also wake to go to the bathroom a lot. The more major problem I have, though, is that I apparently never get into deep/dreaming sleep. [I thought I just didn't remember my dreams, but it seem I don't have any.] Apparently this is why I'm always feeling so tired and unrested and ill. My doctors mostly say that this is not part of my HMS, but part of my fibromyalgia, but who knows? They haven't sent me for any 'sleep test', and if I ask about sleep they just say 'yes, well, we'd expect you to have poor sleep'. It's really annoying, because the tiredness drives me absolutely crazy. I've literally lost my mind because of it - can't think, can't remember, can't function, etc. I'd love to hear any advice anyone else on the list has about these sleep disorders.

By Dawn S. on Tuesday, February 26, 2002 - 02:00 pm:

Oh, and the apnea can also cause heart failure if it goes on for longer than a year without treatment and headaches-especially in the morning. I take naproxen sodium (Anaprox)for pain every day, so I didn't notice the headaches til I started having to use Tylenol for pain instead in preparation for my surgery on March 1st. Tylenol just doesn't cut it as well and I have had constant headaches since 2/22 when I had to start using the Tylenol. Dawn

By bree on Thursday, February 28, 2002 - 02:48 am:

I never knew this could cause headaches! I'm so glad you've mentioned it, Dawn. I've always suffered from headaches (a couple of different sorts, from the basic ache to the full-fledge migrane with auras etc.) and have been going through a really bad patch lately. Nobody else seems to understand how horrid it is to literally have headaches every day, do they. The only thing that makes a dint in mine now is codeine tablets [panadiene forte], but I can't really afford to take them every day. And the painkillers I take for my joints (tramadol hydrochloride [tramal/ultram]) only helps if I double my usual dose, which again gets expensive. Now that I know that my sleep/stopping breathing may be behind the headaches, I think I'll start looking for some solutions for that. What is this CPAP machine you mention? I'd love to hear if it keeps working for you.

By Dawn S. on Wednesday, March 13, 2002 - 02:34 pm:

The CPAP machine is a "continuous positive air pressure" machine. It's basically a motor in a box that is attached to a hose like the old fashioned bonnet hair dryers that attaches to a nose attachment. There are 2 different kinds of nose attachments - the one I have that is by far, the most commmon,is a nose mask that covers your nose, straps to your head and seals onto your face. The other one actually has nostril connectors that fit tight against your nostrils (yuck!!) Both force air (regular room air, not oxygen)through your nose and down your airway, which prevents your airway from collapsing. The CPAP machine may or may not have a cold water or heated water humidifier (recommended-especially the heated one). A sleep study is performed with you hooked up to probably a dozen monitors and a CPAP machine. You go to sleep and they start you at the lowest setting and see if it makes the apnea go away. If it doesn't go away, they increase the pressure til they get to the lowest pressure that prevents the apnea and then write you a prescripion for that setting on the CPAP. You then get a CPAP maching from a medical supplier. Mine is covered 90% by my insurance, but it varies. The whole cost of the CPAP machine, hose, and nose mask was around $350.00 US. The machine I got is very quiet and I feel so much more rested when I use it all night. (I'm still recovering from surgery from March 1st to fix a deviated septum in my nose, so I still have swelling in my sinuses that impairs the effectiveness of the CPAP.) My husband gets much better sleep now too...I may look like an alien when I'm sleeping, but that's better than FEELING like an alien all day long, risking falling asleep while driving, doing really dumb things (although I am a very intelligent person), being on edge emotionally, short of breath and patience, tired all the time, headaches, etc. If you think you may have apnea the best thing to do is to record yourself sleeping and then check it out later. There is an "allowed" number of apnic events that sleep specialists say is "normal" to have w/o calling it apnea, but more than 5 events in an evening and longer than 10 seconds are what I remembered...I was tested in the early 90's and told I only had 5 apnic events all night then and they lasted around 5 seconds each. They told me that was not considered apnea. However, this last time, they said I had an average of 55 apnic events AN HOUR and they lasted for between 20 and 30 seconds... They considered that severe apnea... If you do the math, it means almost half the night I am not breathing... I'm back to using the Anaprox and the headaches are much better although the CPAP is not totally effective yet and won't be until I get all the swelling down in my nose... I got the latest and greatest nose mask and CPAP machine on the market. I tried the other masks and they were not great...I finally feel like I'm on my way to better health... If you have any other questions, you can email me at kdmigloo@aol.com. Good luck to you. Dawn

By Dawn S. on Monday, March 18, 2002 - 02:08 pm:

I found something interesting when researching sleep apnea... It is supposedly common in people who have TMJ or in people where their jaw is hypermobile so when they fall asleep on their backs, their jaw can slide back towards their throat and allows the tongue and other mouth tissues to block the airway. One of the sources I found recommended a sleep specialist test this by laying the patient on his back and manually trying to move the jaw down toward the throat. It should not normally move. If it does, that is a likely source of the airway blockage...Interesting tidbit of information...

By Dawn S. on Wednesday, June 05, 2002 - 07:32 pm:

Just an update on my CPAP machine for my sleep apnea...I have been using it for about 3 months now and all the swelling is gone in my sinuses, so I no longer have any problems with that. I am actually rested when I get up in the morning, I can concentrate better, my memory is better, and am not at risk of falling asleep all day long now. It's wonderful, quiet, and my husband actually gets some sleep now also... I think I still have problems with not going into deep sleep, but at least I am asleep all night and keeping my blood oxygen levels up all night.