have both GERD and OSA

[Charlotte1]

Ever since I became ill with dysautonomia (ME/CFS?) in 2012, I cannot sleep lying flat or I'll awaken panicked at sometime during the night feeling a great need to sit up and breath deep for a large intake of air. I feel my heart is racing although I don't know if it really is. A sleep study showed I have only mild OSA (AHI 11) and the percent time below 90% SpO2 is  .2% . Minimum SpO2 : 87.3%.  I've researched and found that OSA can make a person need to sleep upright but I think that's to avoid the heartburn pain, not so much b/c of lack of Oxygen (but maybe I'm mistaken) Regardless, my numbers aren't that bad so I don't understand why I can't lay flat to sleep. I feel like I'm hypoxic but the sleep study shows I'm not.
I now wear a custom made OSA dental appliance which may have helped my OSA somewhat but has made no difference to the lying supine issue (  I've tried MANY masks and Cpap machines  thinking maybe I've got worse apnea than the study showed but all of them cause air to go into my stomach (likely due to weak lower esophageal sphincter (GERD) ) so am now thinking maybe I should try O2 machine but again, do my numbers warrant it?
I now have an adjustable bed which is a God send but unfortunately, my husband and I must now sleep separately b/c he's not interested in the bed going up and down like a yo-yo throughout the night.(if its up too long, my low back hurts).
My night symptoms are similar to Congestive Heart Failure but when I'm not in a flare up (POTS/ PEM), I'm quite active so I don't have CHF.

Does anyone else have trouble lying flat and if so, what do you about it? And how is it related to the dysautonomia?

[Pistol]

@Charlotte1 - I am not familiar with OSA but I am wondering what your BP is like when you wake up at night with the above mentioned symptoms. In the past I suffered from supine hypertension and had similar episodes during the night. 

[Random-Symptom Man]

@Charlotte1 - I have very minor sleep apnea. My AHI is 5-7. central sleep apnea is what gets me. The obstructive sleep apnea isn’t bad. But sometimes, my system just say we’re going to stop breathing for a bit. My heart actually slows down to bradycardia. I wake up with my chest pounding, but not fast. It’s freaky. 

GERD is also a problem for me, but Mine is mostly controlled by Zantac, which was pulled from the stores on the USA. I mainly sleep on my sides though.

my GERD and POTS get worse together many times. It’s all part of the nervous system malfunctioning. 

I also have narcolepsy and REM sleep movement disorder. So I can always fall asleep. I just don’t stay asleep. 

[Charlotte1]

@Pistol, Thanks for responding. I don't know what my bp is at night but when I have flare ups during the day,  it will be very low . Also I've never had high blood pressure, but often do have bradycardia.
During flare ups I often have POTS (neurologist diagnosed) and my pulse increases more than 30 bpm but even then, its rarely gets into the 90s because it starts so low. I'm especially bradycardic an night so it doesn't seem we have the same thing going on.

[Charlotte1]

@Random-Symptom Man  , interesting that you get the feeling that your chest is pounding when you experience bradycardia. Maybe that's what's going on with me and not so much a racing heart. All I know is there is a very uncomfortable (not pain) heart sensation when this happens and I must sit up... no laying around if I have any hope of the feeling dissipating!  I've been monitored several times in the hospital for my ME/CFS symptoms and I always show bradycardia at night (as low as 32 once...usually in 40s- 50s') . Unfortunately, since I wasn't being monitored for sleep apnea at the time, there was no way of knowing if the slow heart recordings related to any non-visible sleep arousals. 

Since reading your response, I looked at the details of my sleep study and see that particular night my lowest heart rate was 43 and maximum was 58. In the NREM  Respiratory Analysis column it states Central Apneas 20 and an index of 18.6. And also says Obstructive Apneas is 1 in the NREM column and a 9 index. I've no idea if that's concerning or not but Central Apnea was not even mentioned at the follow-up., only the mild apnea. There is so much more info given, but not sure what's relavent or not. Too bad the doctor who reviewed everything with me was so dismissive and difficult to discuss anything with....

Do you know much about sleep study analysis? I would love to know why I can't lie down to sleep without needing to catch some air but maybe its nothing to do with apnea .  ...although in some ways it does sound like central sleep apnea episodes. Or it can be due to intracranial hypertention giving headaches that only find relief if I sit up (unless it's too late to make the difference...then its time for migraine medication)

Do you wear a CPAP for your central apnea? I've wanted to experiment with a CPAP to see if it would allow me to lay down to sleep but regardless of which model CPAP or mask I use, I always swallow air into my belly before even nodding off.   I think its likely due to my esophagus remaining open due to loose lower esophageal sphincter.

[Charlotte1]

@Random-Symptom Man - also wondering, if we got pacemakers for our bradycardia, could that help us feel better since I think you're saying that your breathing cessation episodes relate to the slow heart . (is it only at night?)
I'm wondering if its possible that with a healthier heart rate, the central apnea wouldn't kick in??
btw, My overall AHI is 11 and overall RDI is 11.

 

[Random-Symptom Man]

@Charlotte1 - I don’t know much about sleep. I’m still learning this stuff myself. I tried a CPAP, but it made my central sleep apnea worse. One of the common symptoms of CPAP is central sleep apnea. I got such bad episodes that my chest felt bruised for days. A friend suggested a bipap, but I haven’t gotten around to it.

I know from my sleep doctor at Johns Hopkins that “In-home sleep studies aren’t appropriate for people like [me].” He was convinced he wouldn’t see what he needed to see without brain waves, leg monitors and all the rest. It turns out he was right because my local sleep doctor couldn’t make heads or tails of my full results. Several of the “sleep doctors” I’ve seen were basically glorified CPAP salesmen. 

I‘m now on a tricyclic, nortriptyline, which is a nerve pain medication and antidepressant. One of its many side effects is high heart rate. So I’m not having as many bradycardia episodes now. After months of titration go, I’m finally at a clinical dose.

I do get worse central apnea events at high altitude, which suggests there is a low oxygen component to my episodes.

to answer your other question, I’ve had the bradycardia/central events during daytime naps, and similar events when awake. This could be due to my narcolepsy, which I don’t understand yet. Dysautonomia isn’t just POTS. As many people have noted in this forum, we get many weird symptoms. 

If your doctor isn’t willing to work with you as a collaborator, I’d recommend looking for help elsewhere. I hope that is an option for you. I go to my local doctors for measurement because I live a mile above sea level (less oxygen makes a difference). But I take the data to doctors who understand more than Just obstructive sleep apnea.

I hope you get some great results And great help.