Sleep Issue - Whats Happening?

[tonyuk]

Hi All,

I have posted this under stress - but I don't know if this is correct

Symptoms......

I go to bed at 10:30 to get my 8 hours - and when I do ...I find that I go into a deep semi-sleep state and gently convulse - like a mini and gentle fit.....very quickly. I can sometimes feel myself shaking.

Sometimes I am semi awake and feel this happening - and can sometimes wake myself during it....and get up out of the bed. When I do this I feel like I have been asleep for hours not just 30 mins......and have no strength.

Anyone know what i am talking about ?

Its not causeing me a problem - but I do worry that if I had to get up in an emergency I would have problems

When I am alsleep I am properly out and slept through some super thunder - sometimes I am more tired in the morning than when I went to bed,

Things to know

I snore
Hold my breath in my sleep - more prevelant after beer,
Asthmatic - controlled - but wake with asthma if I have not taken my becotide
Hayfever - but the above is not seasonal.

Any light anyone can shine here would be great,

Thanks

Tony

[2sleepy2]

I used to look forward to going to bed with my cpap machine on as I would get a great nights sleep but now I don't feel like I'm getting enough fresh air. My settings are still the same and my mask is tight. Do you know what it could be?

[KatEyes]

I typed a big long comment on your post then thought better of it because I was so angry at what you're going thru just because someone wants to take the easy way out instead of finding answers. I'd just like to encourage you to find a good neurologist who will be objective, or even who doesn't know what has been said by the other doctor. And, get another sleep study at a reputable lab. Although there are standards in the industry, they are far from equal.

One sleep study that did not provide answers leaves me wondering why another one wasn't done. If something still happens when you sleep, a sleep study is still the best way to observe it. As far as how mild your apnea is, did you sleep a significant amount of time in REM and even some on your back for them to capture a probable "worst case scenario"? How low did your oxygen go? Maybe you really don't have enough apnea to treat, but maybe they just weren't able to catch it that one night. Also, for some patients limb movements can be so frequent, the apnea isn't apparent. So many unanswered questions in your case. Sorry to hear you are going thru this.

TonyUK - don't let me scare you off from getting a sleep study. A good sleep lab and sleep doctor can be a life saver, and I mean that literally. Most people with obstructive sleep apnea don't go thru what I have. They get a study, if diagnosed get equipment, find a mask that works for them, and get on with their lives.

Respro1 - Thank you for your words of encouragment. I know some must think I'm selling something in the sleep industry and are just waiting for me to post where to buy it. From your name and your comments I'm assuming you are in the industry in some capacity. If you ever see something I've said that is just plain wrong, please correct me. I don't apologize for being on my soapbox, but do realize I can get a little worked up about "the cause". Would never want to give someone inaccurate information, or lead anyone to think I'm anything more than a layman.

[leolady87]

I agree with KatEyes; have a sleep study done; make sure that it's a certified sleep laboratory.  I had one done last year because I was having nocturnal "episodes" which I thought might have been mini strokes.  I do have some apnea but not enough for the CPAP.  It turns out that my episodes are seizures which came out of nowhere about one year ago.  I'm having a heck of a time trying to get proper treatment because they have diagnosed me with conversion disorder w/psychogenic seizures.  They're becoming more intense.  Good luck to you.

[respro1]

Thanks for getting the word out there. Too many people have suffered for too long because the information was not being provided...especially to the medical staff. Thirty years ago, CPAP therapy was used in hospitals to wean adults off of ventilators and keep newborns off ventilators. Sleep disorders were not being treated with positive pressure therapy perhaps because the machinery was so large and noisy. Or maybe no one had made the connection that many medical conditions are secondary to sleep apnea. They treated the symptom not the cause.
Keep up the good work...spread the word and support.

[KatEyes]

LOL. I wondered how long it would be before someone asked me that. No, I'm just a patient who nearly died before I got diagnosed with RLS, PLMD, and OSA, and some of the damage has never fully resolved. Just about everything I've learned, it was the hard way. Over the last 10 years I've had about 5 sleep studies, as the OSA and PLMD have played cat and mouse. I lived thru 5 years of hellish side effects from the meds before anyone would listen to me and consider something had gone very wrong. I happen to have a wonderful sleep doctor the last couple years, but that was not so in the past.  I don't want to turn this into a rant. I usually just suggest one might consider a sleep study, but geesh, sometimes it's just so daggone apparent. My mission - that people become aware and want to become informed about sleep disorders, and that those who read my posts will not accept being blown off or given a diagnosis of depression without FIRST being sure there is no sleep disorder that needs treatment. That's all.

[respro1]

Just curious after reading many of your comments. Do you work for a DME or a sleep lab?

[KatEyes]

You are not surprised that sleep apnea is suggested, are you? "Snore... Hold my breath in sleep... more prevelant after beer" - classic apnea symptoms. That little fit of movement you feel is probably your body desperately struggling to move to open your airway. Again, common in sleep apnea. Next step for you is a sleep study, and it would be in your best interest to have no beer or sedatives till you get on a machine. Anything that relaxes your throat muscles will worsen your episodes. It is considered high risk behavior. Some are helped by not sleeping on their back. Do what you can to help yourself till you get some help.