Terrified !!!

Hi

I was diagnosed in 03 and did not really use the machine after the 6 month milestone as it made me bloated and my nose would close up when i tried to wear it. Anyhow fast forward to the present day, I have had 4-5 really really bad events in the last few weeks. I have woken up distressed rolling on the floor making god awful sounds waking up the household and one time we had company staying over and I scared the crap out of them. Two occasions I have been on the floor gasping as my kids 6, 3 were crying as they didnt understand what was going on.

I dont know what to do, i goto sleep wearing the maks but i rip it off in my sleep, I havent had any discussion with a medical proffesional since the sleep study, the machine showed up a few weeks later. My wife is terrified as we have known two people to pass away in the last 10 months diagnosed as apnea. I am now scared to goto sleep any find myself averaging 4 hours a night.

Any suggestions would be great
Mark

cheekybegr wrote:Hi

I was diagnosed in 03 and did not really use the machine after the 6 month milestone as it made me bloated and my nose would close up when i tried to wear it. Anyhow fast forward to the present day, I have had 4-5 really really bad events in the last few weeks. I have woken up distressed rolling on the floor making god awful sounds waking up the household and one time we had company staying over and I scared the crap out of them. Two occasions I have been on the floor gasping as my kids 6, 3 were crying as they didnt understand what was going on.

How terrible. How did you get to the floor? Did your kids wake up and come running to see what happened? Ditto the company? Did it take you so long to wake up?

Are you sure those are not epileptic fits?

I dont know what to do, i goto sleep wearing the maks but i rip it off in my sleep, I havent had any discussion with a medical proffesional since the sleep study, the machine showed up a few weeks later. My wife is terrified as we have known two people to pass away in the last 10 months diagnosed as apnea. I am now scared to goto sleep any find myself averaging 4 hours a night.

Any suggestions would be great
Mark

I'ld start by telling my pcp about those fits - consider neurological testing - and, since it seems like your sleep (?) condition has become worse, I would also want a new sleep study - your pressure needs may have change in 4 years.

What you're describing sounds very terrifying - and should be looked into by professionals.

Meanwhile, till you have things sorted out, and get used to cpap, try sleeping on a recliner - the elevated position may help in controling obstructive sleep apnea.

O.

"Sleep apnea can cause jerking, thrashing, flinging of the arms, sitting up, jumping up onto one’s feet or even falling out of bed"

I had just read the above on the net this morning. Prior to my being diagnosed with OSA, I fell alseep one night and ended up on the floor crying. I had cut my ear on the way down on the corner of the nightstand and ended up in the ER. So, it is very possible that apnea is causing the terrifying things you are experiencing.

I have been on cpap for almost two years now and still working with it. My blood pressure has come down and medication has been able to be reduced and I have lost some weight. I'm still working to get optimal treatment.

The main thing is...you can get used to sleeping with cpap. The alternative to treating apnea is disabling and often eventually fatal. I have problems with stuffy nose too. There are rinses you can use and the doctor can give you sprays or meds if necessary. I've gone through many masks trying to find comfort. Everyone is different and you have to keep at it until you find one that works for you. If all else fails, do what I did and get a full face mask. As uncomfortable as treatment can be at times, I don't want to have a heart attack, stroke or the myriad of other problems OSA can cause.

Please call your doctor and get treatment. Also, reading this board will give you the support you need when you encounter problems with treatment, whether it is leaks, mask difficulty or whatever. Just please get treatment for your apnea. The alternative is unthinkable.

I agree with LavenderMist, it really helps to read this board and soak in all of the helpful information. I have been reading here on and off since my June diagnosis. I received my nasal pillow mask and machine in July. I was not doing well with the nasal pillow and kept taking the mask off in the middle of the night. I stopped using it for about a month and just ignored the whole problem, but in the back of my mind I knew I needed to keep working on a mask solution because I would hate to know I didn't do everything I possibly could to prevent a heart attack or stroke.

Reading this board and site helped me figure out the next mask I wanted to try, and I got the return insurance so I could return the mask I ordered if it didn't work out for me so I wouldn't feel like I was wasting a lot of money. I'm adjusting much better to my new mask, but it is still a process of adjusting and working out the problems that come up.

I hope you will go back to your doctor and get the help you need to find the right mask for you, and remember that it takes time to adjust to this new way of sleeping, also make sure you take advantage of all of the information on this board, I have really appreciated all of the knowledge and encouraging words that people post here and I'm sure you will be helped by it just as I have been. Good luck.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): nasal pillow

This info here might help too:

http://www.sleepapnea.org/info/patient/george3.html

O.

cheekybegr wrote:Hi

I was diagnosed in 03 and did not really use the machine after the 6 month milestone as it made me bloated and my nose would close up when i tried to wear it. Anyhow fast forward to the present day, I have had 4-5 really really bad events in the last few weeks. I have woken up distressed rolling on the floor making god awful sounds waking up the household and one time we had company staying over and I scared the crap out of them. Two occasions I have been on the floor gasping as my kids 6, 3 were crying as they didnt understand what was going on.

I dont know what to do, i goto sleep wearing the maks but i rip it off in my sleep, I havent had any discussion with a medical proffesional since the sleep study, the machine showed up a few weeks later. My wife is terrified as we have known two people to pass away in the last 10 months diagnosed as apnea. I am now scared to goto sleep any find myself averaging 4 hours a night.

Any suggestions would be great
Mark

Please fill in your profile as to what equipment you have and your pressure.
Do you use a nasal mask?
Do you wake up with a dry mouth?
Is your mask still on when you roll out of bed?

Give us more information so the forum members can come up with some more ideas.

Den

I would be terrified too if I were you or a family member witnessing such events. You came here because you know you must do something about this. The severity of your events places you far beyond the "guess I'd better at least try again" place. You are going to need to adopt a consuming determination to do whatever it takes to make this treatment work. (I say adopt because if it isn't coming naturally, find some, make it yours and claim it as your own.) (Or fake it till you make it.)

Being here will help you with that. I did not persevere because I'm so health conscious. I've persevered partly out of fear of the consequences of not doing so, but mostly because people on here kept prodding me to keep on keeping on. At some point I realized that the will to succeed had become a part of me. You couldn't make me quit now.

Now, you could pull out that machine and mask and try again to use it while sorting thru what needs to happen next. That seems logical to me. But I do believe I would call the doctor and tell them you are having episodes that you feel are life threatening, and ask them to intervene right away. That will probably mean a current sleep study. Or it could mean the doc ordering a two week trial on an auto titrating machine that will determine the pressure you need to stop events. It will be between you and your equipment provider to work through the mask issues.

Or you can do it yourself online here with some direction from others. When you post your equipment and prescribed pressure, etc. that will help.

Till resolved, maybe elevate the head of your bed (not pillows - the whole bed), stay off your back, avoid alcohol and be aware that some meds contribute to apnea.

You are on your way toward a better life.

Kathy