[Pacifica]

I just got back from seeing my ENT to go over sleep study results. I had the study done a couple of weeks ago. I did not want to have the sleep study because I didn't think I was snoring or having apnea. I went to see him for popping and hearing loss in the left ear.

He diagnosed the ear problem as TMJ and then insisted that I needed a sleep study. The study shows that I stop breathing an average of 26 times an hour with drops in my oxygen levels. The longest apnea was for 43 seconds! Yikes, that is a long time.

I woke up 95 times during the night related to the apnea. No wonder I am so tired in the morning. I knew I wasn't sleeping well but I didn't know it was that bad. I am really shocked.

Anyone else here have to use CPAP and how has it worked for you? He gave me the option of surgery but I wasn't too thrilled with having my tonsils, adenoids and uvula taken out. He told that the surgery doesn't even work 30% of the time. Not the best odds. I will try the CPAP first. Thanks for listening. I am a little upset about the whole issue.

[starfish]

Getting your tonsils out as an adult can be very risky.

My brother has that study done. uses the device, and sleeps much better. He does not snore as much per his wife.

Good luck!

[Snoopy]

I use a CPAP, Pacifica.

It's a love/hate relationship - I love the positive affects but hate using it

By the time I decided to bring up my fatigue to my PCP my quality of life was nil, I was no longer functioning, all I did was hold the couch or chair down and slept. I had also quit dreaming - it's such a weird feeling, as if there is nothing but darkness and emptyness (hard to explain).

I rarely take naps and if I do they are much shorter. I thought my MS was progressing - after taking a shower I would not be able to blow dry my hair, I was lucky to just get dressed before I needed to go sit down. As I said, I became non-functioning.

You might have an adjustment period but keep trying. If your consistant you will see the benefits. Depending on how long you have had sleep apnea it could be several months before you see that diffrence.

Good luck!

[Pacifica]

Thanks so much for responding. I am feeling so low about this whole CPAP thing. It is good to know that I am not alone.

My ENT told me that I would be taking a machine home for a couple of days that is capable of figuring out how much CPAP I need. I am not sure how the machine does this but I guess I will find out.

He then told me to expect a fight with my insurance company over the equipment. He said that they don't usually care about patient comfort or compliance and they will give the cheapest equipment that they can.

I don't feel like I have the energy to fight with anyone over anything. I told him that he will have to deal with my insurance company so that I end up with what I need. He seemed okay with this but I will have to see what he is willing to do when push comes to shove.

He told me that if I leave this untreated, it would reduce my lifespan by 5-10 years. That scared the wits out of me.

Snoopy, what kind of mask did you end up with and how did you choose that particular mask?

Thanks ever so much, Pacifica

[Snoopy]

I use a gel mask, it covers the nose only. It's what I used the night of the sleep study. Mine is a small but I would like to see if a petite would have a better fit. Here is what it looks like:
http://www.cpap-supply.com/ComfortGe...-p/1009040.htm

My sleep study was different than yours. Once the lady who did the sleep study saw enough evidence of sleep apnea she woke me and put me on a CPAP. I went back to sleep and she was able to adjust the machine (from her office) to the correct setting.

I'm sorry you may have trouble with your insurance company. Mine (United Healthcare) approved what was needed.

[weegot5kiz]

i too have been wondering about my sleep issues, i have to ask, how do you sleep with that on snoopy? isnt it annoying, what doc helped neuro or pcp?

[Jan4you]

Yes I do,but its with a nose "pillow' instead of a mask. Works fairly well until I want to turn onto my stomach. I cannot yet keep it on all night long.

I went to a neurologist in the MS neuro's office because I was having tremors or shaking inside my head. He ruled out seizures. and is sure these "episodes" i get is narcolepsy. But I also stop breathing during the day too !!! Go figure.

But for now, I am to use the cpap and then get re-evaluated for narcolepsy.

My MS doc and this neuro have ruled out MS .. for now. But now I dont know. I am changing jobs and insurances too. So.. will get a new set of docs in the Fall.

Hang in there. Its nice to be able to breathe...

Jan

[Pacifica]

Snoopy: Thanks for the link to the mask that you use. It looks like it would be fairly comfortable. I read some reviews for it online and most people seemed to like it.

I do not know why they didn't come into the room to place CPAP on me during the night. The sleep techs told me, when I was going to sleep, that they would do this if I was having apnea. When they didn't start the CPAP in the night, I figured I wasn't having any apnea.

They did come in to check my oxygen saturation probe because my oxygen levels were falling and they did come in to check the little device under the nose that checks for air flow. At least I don't have to go back for a repeat study. It was not easy to sleep in the lab with all that paraphernalia attached to my body.

Hi Jan, Thanks for your encouragement. I am quite interested in the nasal pillows. I saw then on the same website that I saw Snoopy's mask on. I am not a tummy sleeper so this may work for me. I usually sleep on my sides with a small amount of time on my back. I would like a mask that doesn't leave too many marks on my face. And yes, it will be nice to breathe and not be so fatigued.

[Snoopy]

Originally Posted by weegot5kiz

i too have been wondering about my sleep issues, i have to ask, how do you sleep with that on snoopy? isnt it annoying, what doc helped neuro or pcp?

How do I sleep on it? I sleep great, Frank and my DH does too. DH told me I used to be very restless in the night and now I am a very calm sleeper which has also helped his sleep. Best of all. . . I have dreams again

I was told not to worry if I had trouble keeping the mask on all night, most people could not for a week or two. It became my goal to prove that statement wrong and I did, I was keeping it on all night my second night - seriously, don't tell me most people can't (whatever it might be) because I'm not most people and I'll prove it

My CPAP machine also allows the air flow to increase slowing so you don't have the full amount coming at you all at once. However, I now just turn it on so I get the full amount at once - it doesn't bother me.

Frank, my PCP ordered the sleep study.

[Snoopy]

In case your not aware - NeuroTalk has a sleep apnea/sleep disorder forum. You can find alot of information on the topic as well as useful websites.
http://neurotalk.psychcentral.com/forum45.html