Feeling frustration nine months into treatment.

[1koolcat]

Hello,

I have been a member of this forum since January and posted a few comments here and there. I'm struggling a bit with my treatment of my OSA and would like some advice.

After decades of low energy and long term depressive symptoms, I was diagnosed with Obstructive Sleep Apnea last summer and was provided a CPAP machine and mask (REM Star Plus with C-FLEX + heated humidifier + Respironics ComfortGel Mask) in early July. I have been faithfully using my CPAP setup on a nightly basis with only minor non-compliance when I was ill, too tired to clean the mask, or slept over at someone's house. I would say I miss using my equipment an average of 1 to 2 nights per month.

Initially, I felt a definite benefit from using the machine. Within a couple of weeks I felt significantly better and friends and acquaintances started remarking on my appearing more relaxed. All aspects of my physical being felt enhanced after 25 or 30 years of not getting a complete night's rest! I wasn't falling asleep at work anymore, or yawning in the late afternoon.

With my feeling better, I realized I would have more energy to work on other aspects of my life that were harmed by my sleep disorder. I left a dead end (on call) job after 3 miserable years and got a temp job working at an office Monday through Friday, 8am to 4:30pm. This was a first step to returning myself to a more 'normal' life. For a few months I felt I was in a honeymoon period with my new disorder and my new sleep machine.

Unfortunately, somewhere in the last few months I feel like lost my positive attitude. Feeling better in the Fall, I found myself pushing myself too hard at times - staying up late, working a second job occasionally. The end result was I found myself physically exhausted around the end of the year.

In early January I was very frustrated with my perceived health/energy level/concentration. I thought I should be feeling even better now that I've been using my CPAP for 6 months. I toyed with the idea of seeing my sleep specialist for a checkup. After long discussions with close friends, I chose to not make an appointment with the doctor, but instead I vowed to work more on my sleep hygiene. (Regular bedtime and sleeping 8 or more hours per night.) However, I have been finding this difficult - sometimes I reach my goal for a reasonable bedtime only 1 night out of 5.

My current job has easy hours for someone who has trouble getting going in the morning - 9am to 5:30pm. Yet, I am still inclined to stay up very late at night, working on this or that (shades of ADD?). I feel like if I were better rested, that other aspects of my life might fall into place easier.

I now turn to you, gentle people of the CPAPTALK Forum for advice. What steps might I take to further my physical well being? I have my best friend telling me to start exercising regularly (I don't feel energetic enough and feel I'm always short on time) and my mother asking me if I shouldn't be seeing a therapist (due to a couple of rageful outbursts based on high stress and frustration). Where does a follow up appt. with my sleep specialist come in and what do I tell her or ask of her for further help?

Peter, who has been meaning to write this post for a long time, and finally got a "round tuit".

[Titrator]

Greetings Koolcat,

It sounds like your circadian rhythms are not in sync with your sleep goals. Stress also seems to be a factor in your life. Sleep deprevation causes stress, anxiety and a host of other situations.

You can start to narrow this down in pieces. You should contact your physician and ask to do an overnight pulse oxymeter study. You can do this at home with the help of a local DME company. Usually the DME will not charge your family physician for this type of test. The overnite study will tell you if your blood oxygen levels are dropping at night, and if a pressure adjustment is warranted.

If you are experiencing a second wind late at night, you could try Meletonin. I use the GNC Sublingual Meletonin 1mg cherry flavored. You disolve up to 3mg under your tongue 1 hour before you would like to go to bed, and you are like a light.

Regards,

Ted

[SleepyGuy]

You might want to read up on Seasonal Affective Disorder. This is a condition caused by not enough sunlight at the right times. It might help explain why you felt worse starting in the fall. Before knowing I had sleep apnea, I made it a point to get light in the morning if possible and I felt better. Now that I'm using the APAP it doesnt seem to make as much difference, but it's worth a try.

If you read what a lot of people here are saying a CPAP is not as good as an APAP. It does not adjust to different conditions. Your needs may have changed. Your pressure needs can change simply depending on the position you sleep in.

Most APAPs also let you know how you are doing. You can check the readout in the morning to see how many apneas and hypopneas you had. If the number is high, it is time to visit the doctor again.

[1koolcat]

Hello - it's me again.

I've been on CPAP for three and a half years now. Over a year ago I got my sleep doc to prescribe an APAP so we could measure how well I was doing. They said my sleep looked fine and they backed my pressure off from 10 to 8 on my CPAP machine. I did not notice any difference in my sleep and waking experience.

I decided to request a follow-up sleep study in January 2008 (with the daytime napping tests). My sleep doc says I'm sleeping "perfectly" with my current CPAP but diagnosed me as having "idiopathic hypersomnolence" - also known as "EDS" (excessive daytime sleepiness). My doctor says its related to narcolepsy, but I don't have the stereotypical loss of muscle control of narcolepsy.

Since joining the ranks of CPAP wearing night rangers I've always wondered when I was going to start feeling mo' better. CPAP has improved my sleep, but I still don't feel like exercising or pursuing a romantic relationship, nor seeking out a new and better paying job. My daytime sleepiness is a real handicap.

Since early February my sleep doc and I have tried several different stimulant medications in hopes of making my life more livable. The last three didn't help much and I experienced a lot of side effects. The "idiopathic" part of my diagnosis is beginning to make more sense. (sarcasm)

Coming off the last med this week, I've been hit hard by daytime sleepiness attacks. Luckily, things at work are in a lull, so it hasn't affected my productivity.

After my body gets rid of the the last of my former meds, I get to try a new stimulant this weekend. Wish me luck!

[Goofproof]

Too bad they stuck you with two devices that cause poor treatment, a machine that doesn't collect useful data, and a nasal mask, so you can mouthbreath, with no good way to tell if you are. Add to that not warning you that if you can't seal your mouth, the treatment is poor or gone down the drain. Jim

[1koolcat]

Hello,

I don't believe I have much problem with leakage, especially through my mouth. I naturally breathe in and out through my nose.

Though I don't mean to discount your comments. It's been a frustrating time - both before I was properly diagnosed with OSA, and since.

Peter