Just to vent

I think this's only the third time I've posted anything in this forum although I look through it everyday. Sometimes it's kind of humorous, sometimes kind of sad but almost always informative.

I've been diagnosed with "severe" sleep apnea (probably anyone with it considers it severe) and been on CPAP for 15 months. I use a Remstar Pro with Cflex and humidifier. When I started my setting was 12 which I was told was high but needed. It went to 14, 16 and now is set at 18 and the ramp setting is 10. In those 15 months I've logged 1882.3 hours of usage.
I know for a fact that the longest run of consecutive hours actually spent sleeping is less than two hours and 10 minutes. I've had two additional tests done and they say the same thing; I wake up an average of 61 times in 6 hours, I stop breathing about 70 times (once for 90 seconds and they were on the way into my room to either wake me or bury me when I woke up on my own), my legs move over 300 times and my favorite, my heart beats faster when I'm asleep than when I'm awake. I've been given different medications and nothing seems to work. Needless to say, I'm frustrated.

Here's where the informative part comes into play. When reading through everyone's experiences something suddenly occured (it probably would have come to me sooner but I CAN'T SLEEP). I've never spoken to a doctor.
It's always been a nurse or technician (I mean no offense to either). I've been going to a well known sleep "institute" associated with the largest hospital in Seattle so it's not like I've been going to Sam"s sleep and bait shop.

I have an appointment tomorrow morning at a new clinic where they tell me I will actually speak to a doctor. I just finished filling out the 23 page questionaire they sent me, gathered up the results of my three sleep tests, copies of my prescriptions and blew the dust off my machine's carrying case and tomorrow it starts all over again.

This is truly miserable, and to those that experience problems working their way through apnea you have my heartfelt sympathy. To those that experience relief from this problem, you have my congatulations (and envy).

Thanks for listening.

Oh man, I can see the reply coming - so I'll give it.

You've got a [url=https://www.cpap.com/cpap-compare-chart/CPAP]CPAP[/url], not an auto. No matter what the sign says on the door - sams bait and cpaps or mayo sleep clinic - your titration could be off.

Hi Will,

Good luck. Hope you are armed with lots of questions for the doctor. It's good you are seeing a doctor. We complain here about bad doctors, and there's no guarantee how yours will be. But a good doctor is great, and necessary. Hope yours is good. But ask your questions. And if you forget, keep asking, even if it means calling with your questions. If you're concerned about what the doctor says, let us know. Perhaps someone with similar experiences can help.

Good luck. And if you like, keep us posted on how things go.

Linda

Hello Will,

I have some similiar problems. For the restless legs (58 x a hour), I take Neurontin, which seems to help (I guess, since I have no way of telling other than my legs used to hurt all time when sitting still and now they don't). I also have episodes of fast heartbeat at night, usually wakes me from a deep sleep . Actually had one last night, lasted from 4 a.m until 11:30 today. Is a very uncomfortable and frightening feeling. I have been to a heart specialist and he says that the upper part of my heart goes into a "quiver" instead of beating (forgot the techincal term). Anyway, according to the ekg's and other tests he sees no problem with my heart. No clogged arteries, etc. He seems to think the episodes are caused by my oxygen level dropping dangerously low at night due to apnea. I tend to agree with him since it only happens when I am asleep. Sometimes lasts for 12 or more hours, then just goes back into a normal beat. He said it was not dangerous unless the episode lasted for 48 hrs since by that time blood would be clotting aroung the heart and poised a very real danger of a blood clot breaking off. At this time he has not prescribed any medications, waiting to see if the cpap works. I am hoping but it has happened twice in the last 3 weeks. Apparently there are apnea episodes that my bipap set at 18 is not preventing. Going to sleep doctor next week and going to ask for an autopap w/cflex. Hoping it will be better.

I'll let you know if it works and please let me know what you find out at the doctor tomorrow. Yours is the 1st post I have seen that has similiar problems.

Good Luck,
Gilda

Ohmigosh! Have you got problems. Can't believe they havent rectified this in 15 months of therapy! What were your oxygen desaturation levels during your 3 sleep studies. I'm wondering if perhaps you might need some supplemental oxygen along with the CPAP. I know Wader, etc. I'm probably jumping the gun, but it does make you wonder, when such high pressure and meds aren't helping after all this time.

Could it possibly be that you have some other medical problems associated with the Sleep Apnea, or are you on any medications which have insomnia, etc. as side effects?

Hopefully, they will figure all this out at your next appointment and get you on the way to recovery.

There are new medications coming out all the time for various problems, so maybe one of these will work for you too.