Underlying sleep condition

[Davidacarrick]

So I hope everyone is well and surviving the pandemic. Thoughts with you all and I hope your all taking care.

I haven’t posted for a while. 

I was in hospital again at the start of March for an overnight sleep study as my apnea is well under control 0.1-0.7 AHI a night! However....the consultant thinks I have an underlying sleep condition due to a number of issues I’m still having. I was prescribed melatonin at night meantime but should be getting my results back this week.

The nurse came in in the morning after my overnight sleep study and said “yes your right you really do have a broken sleep”. I apparently didn’t lay still all night, woke up looking round the room at one point, oh and the sleep study machine I’d dragged onto the floor!!!

There’s worries I could have REM sleep behaviour disorder or some other parasomnia. I don’t lay still during the night especially when in REM your body should be paralysed whereas I’m very active....like a dog when he’s dreaming is the best way of describing it. 

My biggest worry is REM sleep behaviour disorder and it’s links to Parkinson’s as it is in my family.  I’m 100% sure I have restless legs that’s for sure but worried what else will come back.

Many nights I have the CPAP tube wrapped round my neck...multiple time’s a night. CPAP machine on floor. It’s crazy.

I wake up wanting to go back to bed for 8 hours and regularly nap in day still.

[SarcasticDave94]

Hi David, glad you posted to update us, and glad you're well, more or less. I do wish you the best in going through the still undiscovered sleep ailment. I sincerely hope the medical team finds a cause and solution.

Stay safe and sane.

[kwhenrykerr]

Hang in David and may the docs figure it out. We all wish you better sleep. Keep us informed.

[Dormeo]

Do you think they can schedule a consultation via phone or something like zoom so you can learn more during the CV sequestration? It must be really rough waiting.

[Sleeprider]

One solution to keep your machine off the floor is to use a bedside stand with a drawer or two and to suspend the tube from your headboard or wall. I have some pictures if you need the ideas, but I have kept my machine in a drawer next to the bed for years, running the tube and power out of a 2-inch hole in the back. I use a simple lanyard to suspend the tube from my headboard so it moves with me at night. I certainly don't have the scope of problems you have with movement, but this would at least keep you from damaging an expensive machine. There are a number of therapies for parasomnia, but I empathize with the difficulty it presents.

[Dormeo]

Another possibility for keeping the machine in place: put a hose cover on the hose, then safety-pin it to your bottom sheet, maybe using several pins. -- I don't know whether your movement at night would be enough to result in a ripped sheet, but this might be worth a try.

[Davidacarrick]

So the consultants secretary spoke to me briefly over the phone and said there’s some restless legs there but my full diagnosis (whatever else has been found) she couldn’t discuss over the phone and I have to go into clinic to see the consultant which isn’t going to be anytime soon due to the fact there’s no clinics running at present with th coronavirus outbreak! Deep joys

Hopefully going to speak to my psych about changing me off my antidepressants and antipsych drugs onto something that combines both (lamotrigine) which has shown to be effective in helping with bipolar as well as restless leg in the meantime

[SarcasticDave94]

Hope they do that if that's best David. best to ya, and again stay safe

[Ockrocket]

Here in Australia we have gone "seeing our doctor" by Skype or other video link options they have for us to use as patients. 

I found a large rectangular plastic food container at the supermarket to sit my Dreamstation in on the floor next to my bed ( I leave the lid off ).. and it also doubles for the same purpose when away in my HiAce camper-van as the only spot for the machine is in a storage area under the seat/bed in the van, and from there I can run the hose out and up in the back corner of vehicle to where my head is when the bed is set up at night.

Given such a low AHI do you really need to be using a CPAP/APAP at all? 
I doubt if mine had been that low I'd have been given one by my specialist.

Hopefully you get to the root cause of what is causing your sleeplessness and tossing and turning.

[Davidacarrick]

AHI was was/is through the roof without it. Sorry I should have been clearer it’s my CPAP that is controlling my apnea rally well down to 0.1-0.7