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Introduce Yourself


#104

My name is Mary and I’m a sleep apneac! Probably due to the structure of my jaw and neck, so have had this most likely for my whole life. I’ve always been more fatigued than most people. Have used a CPAP for 12 years now and it has probably saved my life. Currently use an AirSense and AirFit, with some little cotton liners. Just ordered the AirTouch mask and can hardly wait. No matter how I adjust my mask, I still wake up with lines and redness on my face. The silicone seal also turns my skin yellow (the cotton liners help here). When I started using a CPAP, I had JUST learned to pack lightly for travel, and so hauling an additional item was annoying. However, the machines have gotten smaller; I’m really looking forward to getting the new travel machine.
For a while I also used a dental device. My apnea was so bad I still needed the CPAP, though. The dental device “upgrade” was uncomfortable, so I no longer use it–just the CPAP.
This group will help me keep up with the latest technology.
Sleep is lovely and essential for a good life. The only three nights in 12 years I’ve not used my CPAP were when the power was out!


#105

My name is Sharon and I am 68 years old. I was diagnosed with severe sleep apnea a few months ago having had absolutely no idea that this was a problem for me. I have been using a CPAP machine for three weeks now and have noticed a remarkable improvement in my level of fatigue during the day. I still have a great deal of difficulty falling asleep however. I use breathing and relaxation exercises; I’ve tried melatonin and herbal teas, and I’ve taken prescription medications (which have helped, but I cannot continue to depend upon them). I would like to learn what other folks have found to be helpful for insomnia and I also look forward to learning more about living with this condition. Thank you!!


#106

@shalav Welcome to the Community, Sharon! I know there are others here with this experience. Would someone share their methods with Sharon?

I am so happy to see that you have tried breathing and relaxation as tools, and especially pleased that you are feeling less fatigued during the day. People that do not have sleep apnea have no idea how excessive daytime sleepiness on a regular basis (as most people with sleep apnea will agree) plagues them.

Would love to hear some stories for Sharon!! :slight_smile:

Thanks,
MotherT


#107

Thank you for sharing your story, @mayree ! We learn so much from each other in this community!!


#108

Hi! I just got back the results of my sleep study. At first it was confusing because it really didn’t say anything other than that I should take sleeping pills (the attendant kept the TV on at first and then his cellphone kept dinging so I didn’t get to sleep until 3 am so I only got 2-3hours sleep), but then my PCP talked to the sleep study people and they said they diagnosed me with “moderate obstructive sleep apnea.” But the weird thing is that they admit that I didn’t stop breathing; there was no stoppage at all, just what they call “under-breathing.” And they want me to take sleeping pills, go for a 2nd study and be fitted with a c-pap. I’m interested if others have experienced this type of diagnosis—that even though there was no evidence for any stoppage of breathing during the study, do they automatically want to convince you that you have sleep apnea? I’m trying to keep an open mind, but it really sounds weird and biased to me. I had 1 episode during a heat wave in August where I woke up gasping as if for air, and I mentioned it to my doctor as I was concerned. So she ordered a sleep study. But I have had no episodes since, so I really thought it was just because of the extreme heat. Plus when I went to the sleep study, they were supposed to wake us up and fit us with a c-pap if we stopped breathing. The guy next to me had to be wakened, but not me, so I thought that meant that most likely I didn’t have sleep apnea. What a shock when I got this diagnosis!


#109

hi there everyone. my name is James and i’m struggling with sleeping issues for the last 3 years (i’m 36 yo) and oral steroids aren’t helping me anymore. i’m currently searching to get off them and to start dealing with insomnia problems in more natural ways


#110

Hello fellow sleep enthusiasts! I am John from Oklahoma and have had OSA since 1983. Currently on A CPAP with good result but came to this site to try and gain knowledge.


#111

Hello, up until this morning I thought I had Moderate Obstructive Sleep Apnea with AHI of 24.8. My past 2 sleep studies confirmed this. However, my latest sleep study this past Friday said I had Chronic Insomnia and only an AHI of 1.8 thus no Sleep Apnea Dx. My weight has not fluctuated 205-207 lbs. My concern is do I need another opinion? I continue to fall asleep during the day, fall asleep while driving (give wheel to my wife after 30 minutes or when she sees car veering off road), and I have difficulty falling and staying asleep which are same symptoms I had when I saw my pulmonologists in the past? Can you please help? My first Study was in 2010 and second was in 2014; both shared no REM and hardly any Deep Sleep. I’ve had difficulty wearing a full mask because I am a mouth breather. The recent results have me baffled and confused. I would appreciate any all help! Thank you.


#112

@link Do you have the latest sleep study report? If so, how long does it say you slept?


#113

Wow. Thank you for responding to me. I have not seen the sleep study report but this is what the doctor mailed me:

Total sleep time was 271 minutes. Sleep efficiency was 73 percent. Latency to stage REM was 120 minutes.
The study was performed on room air. The apnea index was 2.2. Looking at all apneas, 30 percent were central in nature. The hypopnea index was 1.8. The nadir oxyhemoglobin saturation was 80 percent, during a respiratory event.
Periodic limb movements were not observed.

INTERPRETATION:
AXIS A: Chronic insomnia disorder (F15.01)
AXIS B: Baseline Polysomnogram
AXIS C: See EMR

Interestingly, my othere 2 sleep studies showed sleep time around 399 minutes give or take a couple minutes. I don’t know if that means anything. I just thought that sleep apnea is a long term chronic problem. During this recent sleep study I got up around 4 times to use the restroom maybe five times. The technician had me taped everywhere making it very difficult to move around in bed (ie, tape on my eyelids, legs, chest, face, etc ) and really tight making it difficult to become comfortable sleeping. But if this makes sense, I would appreciate learning whatever you can share. Again, thanks so much.


#114

When you sleep at home, do you usually sleep more than 4.5 hours? Do you usually get up for the restroom that many times at home?


#115

I try to sleep as much as I can but yes more than 4.5 hours. But, I do get up and down. I still have symptoms similar to being diagnosed with BPH due to urgency so I would get up during the night. But I try to sleep as much as I can. However, when I wake up I am not refreshed and like I said, I get tired during the day whether it be driving or when I worked during meetings. Hope this helps. Thanks for the response.

Dean


#116

Hi! This is Sue again, the one who wrote about the sleep study that claimed I had moderate obstructive sleep apnea even though they admit there was no record of my having stopped breathing. Just wondering if there’s any way to get a response to what I wrote on my first time. It was just an honest question as my experience with the sleep study people really made me wonder if others had felt this push to get a cpap even though the study did not find any evidence of stopping breathing, but just wanted to push me to take sleeping pills and get titrated for a c-pap even though I am never tired except during the heat wave last summer when my bedroom got very hot. And I keep getting messages from discobot wanting me to play crazy games with it. Is my refusal to play with it the reason nobody replies or offers suggestions as to why my experience was so weird with the sleep study people? Sorry if I sounded negative; I just really am curious about this whole thing.


#117

Hello, this is Dave.

I have been a passive member since last summer. I had an ischemic stroke last spring and was subsequently diagnosed with complex, severe sleep apnea. Since July I have been using a PR Dreamstation BiPap Auto SV with a Dreamwear nasal mask.

My sleep routine is a predictable 8 hours of deep sleep…something new for me. It took a stroke to unpack all of my sleep related issues.

To me, sleep is the end all, be all for a healthy and vibrant life. Matthew Walker, PhD, just published a book called Why We Sleep. I would offer this is a must read.

I enjoy this site very much and appreciate the professionalism displayed.


#118

hi i am new. dont know how to start. but i am really glad that i found this forum. Because i feel that my surrounding dont understand what i am being through. i think i am mouth breather and this really cause me a lot of pain because right now i have chronic follicular tonsilitis which doesnt want to resolve eventhough i ve taking so many medicine. i feel that all the treatment cannt help me. because everytime i wake up from sleep my mouth get so many dry. Right now i really hate sleep because everytime i wake up from sleep i feel headache, dry mouth. i dont know how to resolve this problem. i really look forward from this group discussion. thank you.


#119

Greetings sleepers. Thanks for all your sharing and support here.


The results for my second sleep study came today, and I was pleased to learn that I have sleep apnea. Pleased? Yes, because it means there’s a chance I’ll start feeling better soon. Although I was told thyroid meds would help me feel better soon, and instead they made things slightly worse. 6 or 7 years ago I went to a sleep doc who “checked for sleep apnea” because my father has it, and I had trouble sleeping and trouble waking up. The oximetry test said I slept fine when I did, and the doc said the reason I felt awful was Delayed Sleep Phase Syndrome and the best thing I could do was change my sleep schedule. So I tried that and went from having 5 or 6 colds a year to 1, which was nice, but my brain function didn’t improve. In my early forties, I should have been fairly close to the functionality I had in my late 30’s, so my doc tested me for ADD because my mother has it. Adderall helped a lot at first, but I’ve been in a very gradual decline since then.


So I’m getting a machine on Tuesday. It feels like a long, long time from now, but it does give me some time to educate myself. Among other things, I’m hoping to learn if there are any steps I can take to sleep better before Tuesday. I’ve done a lot of sleep research when learning about Circadian disorders, but I always thought I didn’t have apnea, so never learned about it.


My sleep routine: I avoid coffee within 7 hours of bedtime, and sugar and alcohol within 2 hours. I use an app to reduce the blue light from my computer screen at night. My room is dark and cool. I like heavy blankets, so my partner made me a quilt that weighs 15 pounds. I generally have one or two cats on or next to me. I try to sleep around 2 am, usually with something to listen to, to occupy my anxious mind, something not too interesting or important, either a podcast discussing baseball or an ASMR video. On good nights it takes about 15-20 minutes to fall asleep, on bad nights the snorers in my family keep me up and I have to move to the couch till they get up at 7. Four days a week I get up for 10 minutes to see my youngest get a ride to school, one day a week I drive the 5 minutes to school, and then go back to sleep until about noon. On most weekends and summer days I sleep till 11 or 12. Only morning time has been getting later and later, my days getting shorter and shorter, making me less and less effective at work and home, which adds to my anxiety and depression, which makes my health poor, which make my sleep less restful, etc, etc.


Sleep is a flirty unicorn in a thick wood, teasing me with peripheral glimpses, what will not let me dream. Sleep is a field of resinous vines, entwined about my limbs and my mind, what will not let me fly.


#120

Hello. My husband is 48 and was just fitted for his CPAP mask yesterday. During the fitting, we spoke with the respiratory therapist about these strange episodes my husband has when he is trying to wake up but is unable to do so. He has jerking, thrashing, and uncoordinated movements with that typically start with his legs, then move to his arms and then his head/neck. One time he even mumbled “Help me” as he was trying to wake up, but it was not in his normal voice. It was eery, and he sounded scared or sick. He has these spells FREQUENTLY. (He even had been asleep for about an hour last night when he began having one while he was wearing his CPAP.) As we described this to her, I also showed her some of the videos I have of him doing this. Her demeanor quickly changed. Then she pulled up his sleep study report and read it in more detail. He only had 3 obstructive apneic spells (longest one at 27 seconds), but he had 58 central apneas and 0 mixed. However, the diagnosis is moderate supine predominant obstructive apnea with mild central sleep apnea. The RT said that it seems like the wording might have been transposed on his report with their being such a high number of central apneas. She mentioned that he likely needs to see a neurologist.

John’s PCP has also seen those videos, and he said that it was hypnagogic hallucinations. When I’ve looked at those kinds of videos on youtube, they do not at all resemble what John is doing. Because of his violent thrashing motions, he has thrown himself out of the bed, out of the recliner, off the couch, etc. His legs come up high as if he is kicking something in a dream, and his arms flail about. His head bobs up and down, side to side in an eratic manner. He says that he is fully aware of what is going on in the room. He can hear the TV or me talking, but he cannot wake up. He has kicked and hit me in his sleep.

He has also had about four episodes where he is talking and the words just become distorted mid-sentence, and then he returns to normal behavior. The first time that happened, he sounded like he was speaking Cherokee or another Native American language. He realized what had happened and had no explanation. There was no illness, no nausea, headache, tingling, etc.

I would love any comments / suggestions that you have. I would love to share the videos with anyone who could tell me if they’ve witnessed things like this. I’ve never really thought that this could be neurological, but after the RT seeming so concerned yesterday, I am quite concerned. I look forward to the replies.


#121

@cdimom - Serena, please do send the video for a better understanding of what you are seeing. You can email me at ASAA@sleepapnea.org I will get back to you.


#122

WOW!!! Thank you for the PROMPT reply. I’ve just sent a couple of the videos to you. I’m having to search through Facebook Messenger to find the one of his saying “Help me.”

Serena


#123

It might be something called Rem Behavior Disorder. Normally we ‘disengage’ from our muscles when we enter dreamland. This is so we don’t act out our dreams. In some people, this doesn’t happen. They can thrash around, swing their arms, and even jump out of bed. Verbally, they can cry, scream and laugh; among other things.

Might want to ask your Dr. about this.