struggling to find the answer...

Hi all,

I have read so many stories on this community site that at least I know I am not alone or a freak.

I have been on CPAP on and off for about 7 years prior to September 2011. I lost a bit of weight after I was first diagnosed and went through a period where my snoring disappeared, so I stopped for a while.

Prior to September I had been to my PCP a number of times because I was waking up around 2 am each night and had real trouble falling asleep.

He then had me go for another sleep study, and yes I had qualified real quick that night for titration. It started at 12:15 am.

I was put on a few days later a Res Med S9 set on Auto set for 6-15. Which after my first visit was changed to 6-13.

My awakening since then has been without missing a night and worse than before the new machine. I got so wiped out and exhausted I dropped to the floor slow motion style. Just rubber legs and wobbles I never was out. That put me in the hospital, and I have had so many tests in the hospital, and my PCP has really tried to find the answer. My sleep doc that is tied to the APRN is so well ...... I can't speak it, but let's just say my PCP has arranged me to see a new guy who is the head of Neurology and Sleep at the Hospital.


I now know more med names than I care to! Ambien, Ambien CR, Trazedone, Alazapram, Adivan, Ropinerole,Nortriptyline, and I am probably forgetting some trials!

The latest test was 2 nights ago with 1 10 mg Ambien, 1 .25 Alazapram, and 1 10 mg Nortriptyline. Same sleep pattern wake at 2 to 3 am and do not fall back asleep and just toss every hour or so with my mask on and try.......


Last night was test per dx instructions add another 1 10 mg Nortrirtyline. Same results, but add now a sick stomach, and sweating, and shaky nervousness.

So no Nortriptyline tonight for me. 2 nights was no change in sleep and the side effects are not good.

I was to call PCP Monday if no change in sleep. Now I can add in the side effects of this new drug.

I have been down so many roads....... No answers. Nothing on EKG, Echo cardio gram, ultrasound on my neck arteries, CAT scans, more blood work than I care to think about etc etc. When I had an awaking in the hospital they checked sugar as well.

I pray for an answer. I am not living, just barely existing.

Exhausted in New England

I am in no way qaulified to answer with any authority, so usual disclaimers. I feel for your situation, as I am trying to track down my "problem" - which doesnt seem as serious, but you never know, there are some signs to be cautious (checking out a possible hernia(s) tomorrow, which would explain a lot in hindsight if proven).

have you used an oximeter?
how's the AHI before and after treatment?

MRI of brain perhaps?

careful with them drugs even if they are legal.

and I might add concern with an "off and on CPAP" approach. Im on mine for life, with only moderate apnea. until such time as I can prove I can do without it and remain under AHI 5.0, the standard (actually I would want 2.0 or less). does your sleep pattern vary either way?

Hey Peter,

Thanks for the comments. Regarding the meds, those listed were different times and attempts my Doc had me try. It's been over a period of 6-8 months.

I do have a couple of bulged discs so it could be something in that area. My awakenings are like a clock. If I go to bed at 10:30 , I usually conk out by 11 ish or 11:30. Then I pop up at between 3 and 3:30. It only moves if I move my bed time. That they had me try as well. All that did was change clock time. The awakening stays timed pretty much the same.

It's a long story with a lot of different attempts of finding the answer. All the meds and attempts at change are with the doc or APRN or that lovely sleep doctor I have that only tells me that sleep is like eating or going to the bathroom. And that's about all he has said in my first appointment with him. I was like ..." really you don't say.......


G

Pharmaceutical companies and their products--some amazing stuff; but sometimes the magician loses track of the genie.

Your body likes habits. If it's used waking up 4 hours after you fall asleep, it's going to take ALOT of work to change it.

Just realized I did not answer a few questions on your post Peter, sorry about that. Kind of foggy here on the ol iPad.

I do not have an oximetry, and I just recently downloaded the sleepyhead software on my Mac and have been looking at my data.

My AHI for when I am sleeping is below 1. It actually each morning I look on my machine it's .1 or .2


My leaks are for the most part not too bad most nights. What is strange or maybe not...... Is the "event" that i do have is also around the same time each night. And it's just about within 1/2 hour of the awakening.

G

FarmGirl wrote:Your body likes habits. If it's used waking up 4 hours after you fall asleep, it's going to take ALOT of work to change it.

Any ideas Farmgirl, I will try just about anything at this point. I even have given up my beloved 1 cup of coffee per morning.

Trying all the sleep habit stuff I have read as well.

The best thing I can suggest is to get into a de-stressing routine as early as possible when you get home from work ... Lavender bath, camimele(sp) tea, warm milk, etc.

Um, just curios if you've ever tried a fixed pressure for your CPAP??? The APAP is doing a good job preventing apneas but perhaps the increasing pressure to prevent apneas In what is likely your REM period is what's waking you??? It would be very helpful to look at your flow rate data for a few nights to see if there are some clues.

Sometimes doctors miss the obvious. It's easier to throw an RX at you than to carefully looke for data.

Janknitz's advice sounds wise. You might talk to your doctor and try using fixed pressure CPAP at various pressures and see what happens.

Be careful of tunnel vision. Just because you have apnea, don't miss the possibility that your problems are an unrelated medical problem.

Do you have copies of your sleep studies? Do they say anything about limb movements?

kteague wrote:Do you have copies of your sleep studies? Do they say anything about limb movements?

The report shows movement for about an hour and a half and then goes away for the night, they started when the CPAP was placed on, lasted for an hour, then gone, Sleep study showed in September Sleep efficiency was 73.5%, Total Sleep time was 353 minutes, stage 1 sleep was 9.5% stage 2 45.6%stage 3 and 4 combined 15.7 % and REM was 29.2

Sleep latency was 86 minutes and latency to REM was 67.5 minutes.

Not sure if that above is good or bad

Thanks for the question.....

Janknitz wrote:Um, just curios if you've ever tried a fixed pressure for your CPAP??? The APAP is doing a good job preventing apneas but perhaps the increasing pressure to prevent apneas In what is likely your REM period is what's waking you??? It would be very helpful to look at your flow rate data for a few nights to see if there are some clues.

Sometimes doctors miss the obvious. It's easier to throw an RX at you than to carefully looke for data.

I have not tried that yet, Its a very good suggestion and I have been thinking about trying that. I did already shrink my band to 6-10 and my 95% pressure for the last month is 9.4.

I was on a fixed pressure on my old machine prior to September's sleep study and new Res Med S9 Auto at 6 for a pressure.

Thanks for the comment!

Are you using EPR? If so at what setting? If you do happen to be sensitive to pressure changes and are using EPR that is a pressure change also..

Pugsy wrote:Are you using EPR? If so at what setting? If you do happen to be sensitive to pressure changes and are using EPR that is a pressure change also..

They have my EPR set at EPR1