Hi, I am new here and seeking feedback. I am happy to find a place in which people are so supportive and helpful of each other. Thank you in advance to anyone who reads and provides feedback (to anything below)!
I am not officially diagnosed with sleep apnea but know that I have it. I’m having trouble getting treatment and am considering purchasing an auto cpap and taking care of myself, without the support of doctors or my health plan.
I am 53 years old, almost 54. I’m female, overweight, with hypothyroidism, arthritis and psoriasis (started in 2013), “degenerative disk disease,” and blood pressure has been high off and on over the past few years. (I’m not on meds for it. It goes up and down. Highs have been in the 150s/90s, but often 130s-140s/90s, and sometimes 120s/80s. It has been 120s/80s over last couple months due to changing sleep position, although that hasn’t resolved sleep problem.)
I began waking with headaches in 2011. At that time, I weighed 20 lbs less and was involved in crossfit program, so in much better shape than now. I also swam regularly in years before headaches started and haven’t been able to get back to it since having the headaches and exhaustion. My activity level has plummeted since the headaches started, and my health has declined.
When I started waking with headaches in 2011, I went to urgent care (first time in my life I had headache with vomiting and that made me cry) and was told they were likely cluster headaches. When I followed up with my PCP, he said they were migraines. I never believed they were migraines (and had never suffered from headaches in my life before then, so it didn't make sense that I'd suddenly have migraines), but they were severe and disabling. Migraine medications didn’t help them, and we never identified any triggers. I cut out a lot of things in trying to figure out what was causing the headaches. But cutting various things didn’t stop the headaches.
Since 2011, the headaches became more frequent. I have also been completely exhausted over the past few years, and increasingly less functional, more confused, scattered, feeling really horrible, poor memory, and chronically late for work. But the doctors pretty much ignored me. In addition to migraine meds, a doctor suggested that I take magnesium and riboflavin (headache prevention), and I was prescribed a tranquilizer to help me sleep in 2014. I had gone to dr appt and laid down on exam table while waiting for doctor to come in, and dozed off. He seemed surprised to find me dozing off. I told the doctor I was waking up all throughout the night, and kept waking with headaches in the mornings, and he prescribed a sedative to take at bedtime. I only took it twice because, while I didn’t wake up as much during the night, I still woke with headaches and felt very depressed the days after taking the sedative. The depression was noticeable and not good. I felt that the sedative would just add to the problem if I kept taking it, so I stopped after only a couple days.
Over the last couple years, I’ve been feeling that I was on the verge of needing to take a disability leave from work due to problems functioning (didn’t want to do this but was feeling horrible), and I couldn’t figure out what was wrong with me. I was also falling asleep at my desk at work in the afternoon, and have caught myself nodding off while stopped in traffic on the freeway. I have a long commute in mostly bumper to bumper traffic, and I have employed various things to try to stay awake when driving. I’ve told doctors that but they ignore it.
In June of this year, I was waking daily with headaches, massive, disabling headaches. I had also gotten to the point of sleeping through 3 alarm clocks so just stopped setting them. In mid June, I awoke two mornings in a row with my air passage collapsed, throat closed off, unable to take a breath in for several seconds before air passage opened back up. That is when I realized that it was sleep apnea that has been causing my headaches since 2011. I saw a doctor on the second day that happened (already had appt scheduled – new PCP since my last two PCPs left my medical network) and she said she didn’t think that sounded like sleep apnea to her. (!) She wanted to start me on an anti-seizure medication to prevent migraines. My BP was high and she wanted me to return for monitoring, saying I would likely need to start BP medication. When I said I was waking up all though the night, she thought that could be from depression. I felt like she dismissed whatever I said based on some incorrect assumptions.
I declined the anti-seizure med and insisted on a sleep study. That night (the night following the second time I woke with air passage collapsed), I started sleeping the short way on my bed, back against my headboard so I cannot roll to my back when sleeping. (I live alone.) I started that on the night of June 19, and I have not had a single headache since! I went from waking with headaches daily to no headaches at all overnight by sleeping on my side in a way I cannot roll to back. In June, my BP was high (150s/90s) and since changing my sleep position, it has been checked 3 times and has been 120/80. And, again, not a single headache since June 19.
The side-sleeping is still leaving me with fragmented sleep. I wake from joint pain (shoulders, back, hips, knees) throughout the night, and also when I try to roll to back. I used to fall asleep on my side and wake on my back. Before realizing I had sleep apnea, I’d wake up all throughout the night; I thought it was insomnia. I’d sleep a little, maybe a couple hours on side, then spend time tossing and turning, and, if I got back to sleep, would invariably wake on my back with headache, and that would happen between 3:30 am and 8 or 9 am, but I’d usually wake between 5:30 and 7:30 am. It is clear to me now that my apneas were happening on my back in second half of night (early morning hours).
I went for center based sleep study on Aug. 1. (I had started my side sleeping on 6/19. I took earliest appt available for sleep study.) In the sleep study, it took a long time for me to fall asleep. (I was there two hours before my usual bedtime, and there was red flashing light on wall at feet (and no eye masks available, ended up wrapping pillow case around my head to block light), and I could hear techs talking and laughing). I fell asleep on my side twice, and woke when I rolled to my back. The first time I woke, after a short tossing and turning, I started feeling around for my book and glasses I had left next to my pillow (and was going to reach for light switch above bed after - at home, I’d often try to read and would fall back asleep when reading) but they were not there (tech had moved). When she saw me looking for something, she asked over speaker if she could help me find something, but I responded by asking to use bathroom. She came in and said that we were about half way through night and I had slept about 1 ½ hours, and she said that I woke right after rolling to my back. She said I immediately had trouble breathing after rolling to back, and she could see that is why I woke up. I eventually went back to sleep on my side, and the next time I rolled, I awoke during the roll. The tech then came in and said she wanted me to try to sleep the rest of the night on my back. She said they needed some data of me on my back. Just laying flat on my back, I can feel my air passage closing, and I couldn’t go to sleep. I think I spent about 1 ½ hours trying to sleep and finally, around 5 am, told her I wasn’t going to get back to sleep and wanted to go home. I expressed concern that it was a wasted night, I wasn’t able to sleep much or on back so didn’t have apneas during study, and she told me not to worry. She said I had demonstrated an inability or great difficulty sleeping on my back, and restricted air passage on my back. She said she took pictures of data that showed the restricted air passage on my back.
The sleep study report basically says I had difficulty sleeping and a lot of awake time due to unfamiliar environment. I had two REM cycles of normal duration, and the report says I slept on my side and supine, and there is no sleep apnea. The report didn't mention the restricted air passage on back, that the tech told me the data showed. The doctor who wrote the report recommended a “hypnotic” to help me sleep if I had same trouble at home (which sounds dangerous to me, for a person with sleep apnea). The doctor even wrote in the report that I reported (on sleep center’s survey completed prior to study) “a feeling of not breathing” when I was sleeping. No, I reported two incidents in which I woke up and was not breathing. That was not just a feeling. That was my direct experience of not breathing, air passage closed off, when I woke up. I can also feel air passage closing when I just lie on my back when awake. I also wrote on the report that when I first started waking with headaches in 2011, I told my doctor then that I felt like I wasn’t getting circulation to my head/brain when I was sleeping. That was how I felt when I awoke, that blood flow to my head had been cut off while sleeping. (You’d think that would have tipped my doctor back then off to the possibility of sleep apnea and lack of oxygen to brain.)
After the sleep study, I have seen a neurologist (also saw him before sleep study, when having daily headaches, he ordered MRI of brain which was normal) and a pulmonary doctor, both of whom said it sounds like sleep apnea to them but I need to repeat sleep study. Pulmonary doctor recommended home study (he owns equipment but his office couldn’t tell me cost) and is supposedly checking with plan to see if they will cover it. (It has been three weeks since I’ve seen that doctor and no update from his office (and I did call once since I saw him to check status). I also inquired with plan, they said they’d look into it and get back to me, but I haven’t heard back. I inquired not because I want to do another sleep study but I’m curious to see if the plan is willing to cover another.) The doctors say they cannot do anything without diagnosis of sleep apnea made in sleep study. Also, my insurance (Blue Shield PPO) won’t cover a CPAP without diagnosis of moderate to severe sleep apnea made in sleep study. (If I have apnea in the second half of night when on my back, I’m not sure that is enough for the plan coverage. However, my headaches and exhaustion and problems functioning were severe, and I know I need treatment. And I'm willing to just pay for it. It is my health at stake.)
The center-based sleep study cost over $2300, plus additional for dr who wrote report. The plan paid more than $1800, and my 20% coinsurance (facility and professional fee) was $485. I’ve tried to communicate with the sleep center and doctor (whose office won’t communicate with me since I’m not his patient, only had sleep study that he reviewed) about discrepancies between my experience and what tech confirmed and what report says, and how info I put on sleep survey seems to have been ignored, and that I need help in moving forward, but no response.
To do home sleep study and get meaningful data, I’d have to go back to sleeping on my back, and I’m not willing to do that. And the time and money it is going to take... I think I’d probably have to do center based titration study after home sleep study. I think I’d be better off just buying an auto cpap and managing the treatment myself. I tried to talk to the doctor about a trial with auto cpap rental, to get data to substantiate diagnosis, and told him I’d pay for it, no need to go through plan, but he didn’t seem to hear what I was saying. He was insistent he can’t do anything without sleep study confirming diagnosis. He also disagreed with ordering anything online, saying if he ordered a cpap for me, I’d need to have someone come out to set it up and make adjustments to the machine. I know that is B.S. While it would be great to have local support, I have serious doubts I’d have any meaningful support, and I can figure things out on my own (with help from all the great info online and here).
I’d be happy to do a rental trial with an auto c-pap, but I don’t think I’ll be able to get a doctor to write a prescription for that. I’m considering using an alternative method to buy a Resmed Airsense 10 Auto CPAP for her. I prefer to buy new. I’ve found two websites that have a prescription service but one has bad reviews. The other one appears to require you to buy from them. I’ve read in a couple posts that there is a list of doctors who will prescribe cpap without sleep study, but I haven’t found that list. Is there one, and can someone direct me to it?
Since starting sleeping on my side only, I’m feeling a little better, despite not sleeping well. Not having headaches is a major improvement. Over the last couple weeks (more than two months since sleeping on side only), my head feels clearer, far less confusion, and I’m not feeling so out of it. I’m waking feeling tired but not exhausted and horrible. I’d like to be able to sleep well, be able to sleep on my back (my joints can’t take being on my side all night, and I don’t want to live with nightly pain), and I’d like to get my energy and life back! I see treatment as a necessity, and an auto CPAP seems to be the best option. (I tried a wedge pillow. That was a bad night, and it jacked up my lower back for a day.)
When I think back to the massive headaches, and sleeping through three alarm clocks, it is scary. I’m so glad that sleeping on my side is keeping me apnea and headache-free, but it isn’t a long-term solution. It is disturbing to be facing such difficult obstacles, and lack of support from doctors, in trying to be diagnosed and treated for a serious health condition that can result in disability and death if left untreated. (I have some questions about policies related to sleep apnea, and I'll post something on that later.)
Any thoughts, feedback, advice, suggestions, will be appreciated! Thank you!
Sunshine (I’m not really sunshiny, but the name popped into my head when registering. I thought if people call me sunshine, maybe some of it will rub off on me.