Another breathing/sleeping question

I know I asked a similar question before, but I'm still having problems, and I'm wondering if others ever experience this.

At least two nights a week, I sleep fitfully, dreaming very actively, and waking up with a feeling that I've stopped breathing. (I have been tested for sleep apnea, and the test was negative.) I wake up with a deep breath, roll over, and fall back asleep immediately. Rinse and repeat every 20-40 minutes from about 4 or 5 am until I get up feeling exhausted between 7 and 9. Typically, the dreams I have during this time are extremely active, and sometimes I'm aware I'm dreaming. For example, one of my dreams last night involved me writing a story, and I realized while I was writing it in my dream that if I were awake and could write it all down, it would be a very good story. Of course, when I woke up, I only remembered bits and pieces and a feeling of having worked very hard mentally and physically and not breathing. And, then I breathed deeply, fell back asleep and did the same thing all over again, but instead I dreamed I was running and hiking. Rinse and repeat.

When this happens, I feel horrible all day. Any ideas? I'm taking Coumadin, and my INR was 3.6 (my target) last week.


13 Replies

  • Hi MIchelle. I go through phases of something very similar to this. I particularly notice that the multiple dreams are active, busy, brightly coloured and almost as if they are 'wide screen.' Sometimes, mine are quite scary, for example, 2 nights ago one of them was about someone trying to kick the back door down then all the racing round the house for me trying to keep them out, gather items to protect my family and all the associated shouting, breathlessness and tension. I woke up crying and that woke my husband up. He reassured me and I managed to go back off to sleep but felt tired all day yesterday.

    I don't associate these periods of restlessness and heavy dreaming with my meds, but I do believe they are simply to do with the speed and thickness of my blood at any given time. I can't compare INR with you, as I am self injecting Clexane daily, so no INR records needed, it's just another annoying part of this weird condition. Wish I could dream a lottery win then wake up and find it's true...let's work on that one together, ay?! Larraine x

  • Unfortunately what you are talking about is some of the lesser known sides of Hughes. Sleep Disturbance is part of a dis-regulated autonomic nervous system of which heightened sensitivity to light, smell, noise etc amongst other things is all part. Prof Hughes is writing a book about this.

    Disrupted sleep if not controlled will also cause increased pain, so if your sleep continues to be disrupted and you are waking up non-refreshed, please go to your Doctor and talk about medications to get this under control. Clonazepam or Lorazepam are two good medications for this.

  • Hi, it sounds the same like I have, but I do have sleepapnea. The test wasn't VERY positive but the docter let me try it with an CPAP and my problems are gone now. When was it you were tested? Maybe you can ask for a second opinion. But I am also very curious about the book Prof Hughes is writing. I didn't know these problems: APS and sleeping could be related.

    A bad sleep in this way is terrible. I wish you good luck. x

  • Hi I'm being tested for sleepapnea too at moment I have appointment next week again! I wake up thinking there's something lodged in my wind pipe & can't breathe & convinced that's it!! It is very scary & family have even found me sleep walking & crawling on the floor to get help!! :( (touch wood) I've not done it for a couple of weeks but I'm still not sleeping well.

    Hope you get some answers soon xx

  • OMG!!! I do not suffer from sleep apnea that I know of, but all my life I have often slept with my eyes open. I keep the room as dark as possible because if my eyes focus on something in the room I will wake up. In my teens and twenties I slept walked a lot and provided college dorm Mayes with numerous stories. I warned my husband of this when we marries --but then the sleep walking just stopped. My husband said, " obviously you were looking for me. And now, here I am so you have no need to get up and look for me. "

  • Aaaahhhh thats so sweet Gina : )

    You must be settled well now hun xx

  • Mates --dorm mates. Blasted ipad auto correct!

  • Mates --dorm mates. Blasted ipad auto correct!

  • Gina D that is lovely of your husband very thoughtfulx

  • I have a lot of sleep disturbance - i can be asleep but feel completely awake if that makes sense - i get up n the morning and feel like ive just stared at the walls all night yet i must have slept at some point but then other times i can just be dead to th world - tired all the time but it dosnt really matter if im having stages of good sleep or no sleep i always feel tired!

  • Well, it is very encouraging to hear that I am not alone in this! Last night was better, but still not "normal."

    I thought about buying a self-checking INR kit, but I've read that they aren't very accurate. It would be interesting to document the numbers and episodes.

    I do take Ambien before bed at night, and I don't *think* I have this problem the first half of the night. The problem with Ambien is that it makes you forget everything, so I could be having this problem and not know it, *OR* the Ambien could be ensuring a proper sleep cycle for me. I wish I knew. I only take a half pill each night. Maybe I should take the other half when I wake up at 4 am???

    WHEN IS THIS BOOK BY DR HUGHES GOING BE AVAILABLE???? That's the most important question of all!!!

  • Good grief, and I thought that my sleepless nights were just due to pain and discomfort! I was diagnosed with sleep apnea nearly fifteen years ago, and I use a Bi-Pap machine every night, and had slept really good...that is until five years ago when I started suffering from osteoarthritis, joint pains, poor circulation in my legs and then a P.E. in Sept. 2008, which led to the APS/Hughes diagnosis. Now I lay in the bed, with my mask on, toss, turn and stare at the ceiling till the wee hours of the morning.

  • I've had sleeping problems for years, and never did think it might be associated with APS, until now that I'm reading what you all have to say. I do wake up coughing and feeling like I'm having trouble breathing. I also wear a night guard in my mouth and figured that might be the reason I have trouble with breathing. The reason I wear the night guard is that if I don't, I end up cracking my teeth due to grinding/clenching. Yes, I'm a rather highs-stress person and I use relaxation techniques during the day but haven't been able to control my stress level while sleeping.

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