Fellow Chiari family. I have a CPAP machine for sleep apnea. I just found out I have central sleep apnea as well. This is common in people who take pain meds and people who have neurological disorders involving the brain. Your brain doesn’t tell your body to breathe. Any one with sleep apnea might want to get checked for this. It is treated differently. Sick andtired of being sick and tired.
Yup. I have it too-my problem isn't just limited to sleeping-I have a hard time breathing even when I'm at the dentist and esp at night here
at home. I'll sit on the couch sometimes gasping for air.......struggling to breathe. Been to the ER for it-they just give me a breathing treatment. I did grow up with asthma and take a pill and inhaler every night.
My 13 yr old Chiarian son had surgery three weeks ago to remove his tonsils and adenoids in hope that will help his sleep apnea.
Sorry to hear. Why does this hsppen?
In chiarians, it is because of additional pressure on the lower brainstem. Treatment can be as simple as changing ones pillow or sleeping on ones side. A too soft too thick pillow puts pressure on the back of the neck and can result in more headaches as well. Newer CPAP machines also have BIPAP capability which is the preferred therapy although a its very critical how its set up.
suri said:
Sorry to hear. Why does this hsppen?
I can't sleep on my side-I can only sleep flat on my back. I use a soft pillow that I mold to the back of my head for comfort. I do use a bipap actually too...........
Thank you everyone for the advice.
Paul Anderson
Darla, how is your son doing post-surgery?
Darla Boo Thomas said:
My 13 yr old Chiarian son had surgery three weeks ago to remove his tonsils and adenoids in hope that will help his sleep apnea.
After years of heavy snoring I finally had a sleep study done, I was diagnosed with severe apnea, I tried the machine but it didn’t work for me at home, but the mouth piece sure did, I dream frequently now. I was diagnosed with apnea then a year later with Chiara 1.
He has stopped snoring, when he actually sleeps. Insomnia has been visiting him a lot lately. The sleep center won’t do another sleep study til he is completely healed. Thanks for asking and thanks to this group for giving my son and I some place to come and be with people who can relate. He just got diagnosed in January and we still trying to grasp it all.
Auburnm said:
Darla, how is your son doing post-surgery?
Darla Boo Thomas said:My 13 yr old Chiarian son had surgery three weeks ago to remove his tonsils and adenoids in hope that will help his sleep apnea.
oh yikes, now i am a little worried. I have had really bad allergies since i was little, got diagnosed with asthma the year or 2 before being diagnosed with my Chiari (which was in 2012, 2 months before my wedding). I have had sleep problems for over 6 years though. ever since i worked an overnight shift at one of my jobs. I have always been a light sleeper but the inconsistent shifts (i only worked overnight 2 nights of the week) really threw off my sleeping. When my husband and i got our house i still had problems sleeping. He thinks i may have sleep apnea but we aren't sure if it is that or just my allergies since they have been really bad here the past couple years. I have never heard of central sleep apnea though. Will have to look it up. Not even the pain meds my neurologist has me on have helped, even though she prescribed them specifically because their main side effect was drowsiness. LOL
If you are even the slightest bit concerned, and have the means to do so please see your doc about a sleep study referral. Most of the people that I've met who have been worried about sleep apnea and go for the study end up having on type or the other. It's worth checking out, and once you get used to the breathing apparatus at night most people find they are much better rested during the day. Good luck!
Furie18 said:
oh yikes, now i am a little worried. I have had really bad allergies since i was little, got diagnosed with asthma the year or 2 before being diagnosed with my Chiari (which was in 2012, 2 months before my wedding). I have had sleep problems for over 6 years though. ever since i worked an overnight shift at one of my jobs. I have always been a light sleeper but the inconsistent shifts (i only worked overnight 2 nights of the week) really threw off my sleeping. When my husband and i got our house i still had problems sleeping. He thinks i may have sleep apnea but we aren't sure if it is that or just my allergies since they have been really bad here the past couple years. I have never heard of central sleep apnea though. Will have to look it up. Not even the pain meds my neurologist has me on have helped, even though she prescribed them specifically because their main side effect was drowsiness. LOL
Yeah-call a pulminologist and ask for a sleep study.........
I have talked to my regular doc about one, she wanted to do a blood test first since its been a while. I go in next week for another one, as well as a blood pressure check. If my blood comes back with high white blood cells again (it did last month) then we will be doing more testing. then if everything is clear, we will see about a sleep test. So many different health problems run through my family, we want to make sure there is nothing else going on first. As for my blood cells, she thinks it is from a virus, which i haven't had any symptoms of anythign other than my regular allergy problems. I have been taking echinacea every day since then so hopefully it helped a little. If its not a virus then i will be VERY concerned. But, my appt is on Tuesday so hopefully everything goes ok and i can get started on having a sleep test done. keeping my fingers crossed!
Yup. After my decompression I had many sleepless nights because I just couldn't breathe. Anytime I lay flat I struggle. Even at the dentist. I use a bipap now and am getting some sleep. I also have restless legs and take a med for that.
wow, i haven't had the surgery but i find it hard to breathe when i am on my side... especially when my husband is behind me with his arm around me. i sometimes feel like my lungs are being crushed even though he isn't even holding me, just laying his arm there. I found a product called restful legs that i sometimes take when i feel restless. It is supposed to help with restless legs, the feeling of ants under your skin, and just make your body feel calmer. Sometimes it doesn't seem to wok as well but i definitely feel a difference. and its over the counter.