Pre CPAP Symptoms

Hi I am new to the group. I have never been a great sleeper but the last couple of years I’ve been having several awakening after midnight. About a year ago I started to wake up really groggy and lightheaded on most days. On days I didn’t wake up groggy I usually would get a lightheaded /super fatigue that would hit me from 11am-2pm. Worst feeling ever, just feel lifeless and near passing out. It will usually pass by 4pm to some degree. Some days I just pass out around 3 for 20 minute nap. Oh and alcohol the night before makes for a brutal next day.

General symptoms seem to be dry eyes, eyes take longer to focus when I wake up. I’ve have pretty bad floater the past year. Sore throat was lingering and did an endoscopy to determine I have gerd. I saw and ENT who said my septal deviation is pretty bad as well. Will go back and get a CT next month. I have had random palpitations for the past 8 years. All testing here is pretty normal however. Also wore a CGM to rule out hypoglycemia. My annual blood labs are normal.

Had some sleep studies and have a milder apnea. Hoping the CPAP resolves these issues. If not I assume I need to probe more cardiology or neurologist.

I’ll update when I get my CPAP this month.

Joe

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Hi Joe - Welcome to the community… you sound like you are having a really hard time. I’m so sorry for that. Your symptoms are truly mixed, so yes, more doctor visits :wink: I would think that even with mild SA, a CPAP might be helpful… I wonder if they have looked at Sjogren’s Syndrome too? I have that as well, and what is called Sicca Syndrome (mainly dry eyes and mouth), can cause a lot of things too. Please keep us up to date on what you find out, and especially the things that you end up doing that help or don’t help. Best of luck

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Thank you for taking the time to read and reply. I did have an eye doctor do a thorough medical review of the eyes. Said eyes are somewhat dry but noted no other medical issues. So maybe it’s best describes are fatigue in and around the eyes. I’ll for sure ask my PCP per your advise and will keep all updated

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Let me put my 10 cents in that isn’t worth a dime but here goes. I had no symptoms of sleep apnea at all. One night I got up to go to bed and I had a brain aneurysm rupture and a subarachnoid hemorrhage stroke. While I was in ICU the doctors decided I had sleep apnea and put me on a BiPap machine with oxygen supplement. They would never had caught me if I hadn’t wound up in the hospital. I used to stay up until 5 in the morning and slept about 6 hours a day. Now I am lucky to still be up at 10, sleep 11 hours a day. I always have to have a 1-1/2 to 2 hour nap a day. I am totally exhausted every minute of every day. I have been on my machine for about 18 months now. I just got an appointment with a pulmonologist last week. I had a sleep lab and the doctor was sleep doctor by night and pediatrician by day. He was clueless. In fact, he asked me what I thought we should do. I have no idea, I didn’t go to school to learn about this. I also have had breathing problems since the aneuysm and they diagnosed me with emphysema. When the new pulmonologist looked at my X-ray, he said my lungs look good and he thinks my breathing problems are neurological. Read and learn as much as you can. I honestly think if you sit still for 3 minutes a doctor will diagnose sleep apnea. It’s a money maker for them. I may have sleep apnea and I might not but if I do, I think it would have been good if they had known almost 2 years ago it is central apnea. The doctors and the DMEs don’t seem to know much more than how much your bill is and how to take your payment.

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I can so identify with you Joe. I am experiencing the same as you almost to the letter. Dan

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Thank you Joe for starting the conversation! Please keep us posted on your progress!

Joe, thank you for starting this thread. As you can tell from the variety of responses, this topic is not easy to wrap ones arms around. I, too, spent a few days in the ICU on the back end of an ischemic stroke. In my case it took a neurologist to take the lead in sorting out what happened. While there is no “proof positive”, my opinion, regarding the cause and effect with sleep apnea, there were many smoking guns…most of which I put on ignore. I am a high energy person and used that to justify laying down with a book and immediately falling asleep. Or, in a similar vain, prided myself in answering the phone at midnight on the first ring and being lucid on the phone! In all candor, I was not receiving the proper type of sleep. Quality counts as much as quantity.

The neurologist had a monitor implanted in my chest to eliminate AFIB. After 21/2 years with negative results, they took it out. That is important information. I also took two sleep studies. The first one uncovered I was having severe, complex (brain and obstructive) sleep apnea with a sleeping pulse pushing 200, if memory serves me right. It took a second study to match the equipment with my needs. Patience was the operative word, this stuff is not easy to sort out. The brain demands 10x more oxygen based on its weight than any other organ in the body. In my case it wasn’t getting near what it required.

I am a BIG FAN of team sport as pertains to sleep apnea. I have had nothing but positive experience beginning with a neurologist who knew what levers to pull, the sleep clinic who took the time to sort this out and my DME who works the equipment issues with me. I am now on my second machine and third mask system…a journey that took both time and intentionality to get the best answer.

Please hang in there, use all your resources and be your own biggest advocate. Also, after you start using your CPAP, take advantage of the ASAA Peer Mentor Program. It is comprised of folks just like you and me who are in this to insure we enjoy every moment of life to the fullest extend…and, in some cases…with our new best buddy, the CPAP!

Good luck, Dave