Now this!!!

[kenneltech]

Hi everyone.  Have posted on here about my sleep apnea and other sleep problems.  They are severe and I've had them my entire life, since childhood.

Have gone to a good sleep disorders doctor, but after a while it just was too far to drive.  Got another doctor by where I live, but can't see him for another month.

I'm using a CPAP and I do take sleep meds, but they are much milder than the heavy duty ones I used to take. The last doctor said that my apnea is severe and taking strong drugs can retard my breathing.

ANYWAY, now something else is going on, it just started and (to me) it is weird.  I have been nodding off during the day, which is something that I have NEVER done before, no matter how tired I was.  I ran off the highway once, and almost killed myself.  

The doc did an all day sleep study and I do not have narcolepsy, but he was trying to see what was going on.

So, now all of a sudden, I nod out while sitting in a chair or somewhere, and my body stiffens up like a board and I fall over!  I've fallen off of a chair and a couch on more than one occassion.  I just freeze up and fall over.  I've hit the floor numerous times, and just lay there because sometimes it hurts when I hit the floor.

Let me say that I don't take naps, nor do I actually SLEEP during the day, I just keep nodding and nodding and nodding.  But I've never had a problem to where I just fall over!

Anyone ever experienced anything like this?  And what did you do?  Please help, as this is become a very large laundry list of sleep problems and I just don't know what to do about them.

[Dr Rajput]

Hi, welcome to the forum, it is difficult at this point to come to a specific diagnosis. Your symptoms can be suggestive of Nonepileptic paroxysmal disorders or atypical epilepsy. It constitutes of cluster of 2 or more symptoms like Syncope (dizziness), Psychological disorders (Psychogenic nonepileptic seizures, Panic attacks, Episodic dyscontrol, Sleep disorders and Miscellaneous neurologic events.

Investigations like creatinine kinase levels, interictal EEG, ECG and Tilt table testing will help to differentiate from other epilepsy, heart problems and also supports diagnosis.

It is important to rule out the cause triggering this event like stress, organic lesion in brain,  heart problems, neurological disorders and psychological assessment, which will help to device mode of treatment.

I suggest you to consult physician or sleep specialist for further evaluation. Take care and regards.

[kenneltech]

Thanks!  Any help I can get, I'll take.  I don't exactly know what all to ask, so this helps me a lot.

[KatEyes]

When you see the sleep doc, also ask them about limb movements.

[kenneltech]

Ok, I am getting what you are saying.  I have an appointment with a sleep specialist on the 9th, I will bring in my machine then. I do know that when they did that 72 hours sleep test (NEVER AGAIN!), they found that my total REM sleep was 97 minutes.  That's it.  Deep sleep was never achieved.

[KatEyes]

It's not that the machine would cause you to have daytime symptoms, but if the treatment you get is not fully meeting your needs in regards to treating your sleep apnea, you'll accumulate a sleep deficit, and that can cause daytime symptoms. All I'm saying is I think your first effort should be to confirm your OSA is therapeutically treated, then see if your symptoms resolve. At that point you'll know if you need to take it any further.

[kenneltech]

Yes, my machine does report what is going on.  My question is, how does the machine have anything to do with what is happening when I'm not on the machine?  When I'm sitting in a chair or somewhere else and this happens, I don't have the machine on me.  So, what you are telling me is that I'm not getting enough oxygen at night when I'm using the machine and it's affecting me like this at other times?

I know lack of sleep can definately affect a person, being tired, nodding off, retaining water, etc., but I didn't know that it could cause falling over and becoming stiff as a board.  When I told the doctor about nodding off (this was before this falling over stuff), he did a 72 hour sleep study, and he determined that I do not have narcolepsy (sp?).  He said he would prescribe medicine that they give to shift workers, but I can't take anything that will make my heart race, I have PTSD, and it will throw me into a severe panic attack.

Anyway, thanks for the tip and I will definately try this, as I don't know much about all of this other than the fact that I can't sleep, never could sleep, and now I'm nodding off and falling over.  It's a little unnerving, ya know!

[KatEyes]

Check the machine you have. Some record and report treatment data, such as if you are having apneas and hypopneas or if you have a leak somewhere. If yours does that, your doctor should be able to read the data card for you. (I happen to have software and read my own when I sense things aren't right.) And there's always a possibility your machine is malfunctioning and not putting out the pressure you need. It can be checked for that. And it may be that you need a higher pressure than you used to. If your machine does not report treatment data, ask your doc to order a two week home trial on an auto titrating machine. That would determine your current pressure needs. When sleep is not right, strange things can happen. Falling asleep at inappropriate times and falling are not symptoms you can safely continue with. Problem is, one needs to first make sure their sleep apnea treatment is effective, then see what residual symptoms need addressed. It could be that a tweak of your therapy will suffice.