POLL Adjusting to Therapy

happysleeper wrote:I'm in the never got better mode still....Any suggestions from the masters?

Happy Sleeper

Happy Sleeper,

My first impression from your comments is that your sleep doctor isn’t very effective if he is relying on using Autopap to determine your pressure needs. Did you have a polysomnogram performed in a sleep lab with a follow-up titration done to determine an optimal pressure? A polysomnogram tests many more things than just sleep breathing disorders and breathing efficiency. It doesn’t matter how efficiently you are breathing if your sleep architecture is out of whack. Are you sleeping efficiently? Are you getting enough stage 3 and REM sleep? Do your pressure needs increase during the different stages of sleep?

Autopap is an effective tool for those who need intermittent high pressures throughout the night, but for the most part are okay at a lower pressures the rest of the time and find it hard to comply with CPAP at a high pressure throughout the night. There is no substitute for a properly conducted polysomnogram and follow-up titration and it is the opinion of the sleep doctors that I have spoken to and read that CPAP is a more effective treatment than APAP.

There are the obvious questions about your condition, such as whether or not you are overweight, are a smoker or drink alcoholic beverages. Working on any of these things is probably the first place you want to start in your treatment of your sleep apnea along with effective CPAP therapy.

If these are not issues for you, then your next step may be to see a good, conservative Otolaryngologist (ENT) to have your upper airway evaluated to see if you are a candidate for Uvulopalatopharyngoplasty (UPPP). This is fairly radical surgery, so that is why I emphasized a “conservative” ENT. Remember they are surgeons and some can be biased towards a surgical approach to treatment. Also when selecting an ENT, make sure that they have an interest in or even subspecialize in Sleep Medicine.

Another option which may be suggested as an adjunct treatment is Pillar Implants. They are small inserts that the surgeon places in the soft palate in order to provide support. They firm up the soft palate so to reduce vibrations as air passes over it. This can reduce snoring and in theory can help with OSA. The procedure is relatively simple.

Also, as you are using a mouth guard for teeth grinding, you may want to talk to your dentist about being fitted with an appliance specifically designed for sleep apnea. The appliance helps with alignment and gently shifts your lower jaw forward. As a result you tongue is pulled forward and is less likely to obstruct your airway when you sleep.

Another option is to discuss using a stimulant, such as those used to treat Narcolepsy or ADD. These drugs are also indicated for treatment of residual sleepiness due to Obstructive Sleep Apnea Syndrome, however as with any drug, there are side effects and risks which need to be taken into consideration and evaluated prior to beginning use.

Best of luck in finding relief.

amrosa wrote:Best of luck in finding relief.

Says it all really, doesn't it? For some relief is immediate, for others takes some time and experimentation; for some, never really found.

For me, CPAP was a nightmare at the beginning. I was 100% compliant always, determined to make it work. But until I found this site, hell on earth nevertheless. I woke every 2 hours or so. Off to the bathroom incessantly. Tried at least a dozen masks before "settling" for the best I could make do - I've apparently a long, narrow face, which does not easily lend itself to most masks. Leak issues not resolved until I found the wonderful Polident strips.

2 1/2 years later, I'm sleeping 5-6 hours straight, and the only thing that wakes me is the bathroom calling. Old age, probably, darn it. I can often go back to sleep for another hour or two, three if I've gone to bed earlier.

But even with all the initial issues, I felt better from the start. My feeling (the next day) is that a night wide awake on CPAP is far better than any heavy sleep without.

debjax wrote:I told him the machine was fine, that the increase was probably due to the fact that I increased the pressure to 9 and then 10 when I had pneumonia so I could get enough air at night, and then dropped it back to 8 when I got over the pneumonia. He just looked at me funny for a minute, started to say something, stopped, then went on to the next subject....

I agree with Muse, Don't ya love to do that to them? Keeps them on their toes when they realise we're not all gherkins!

From the VERY FIRST TIME that I wore a mask to bed, at my sleep study, I felt 10,000 % better!

When I got my own Cpap and started using it every night, I was feeling GREAT, compared to how I felt before therapy. I would have been happy staying that way, until this Forum let me know that I could feel even BETTER! To that end, I had another sleep study done, and have now "Graduated" to a Vpap (which I am STILL waiting to get ) to get a better night's sleep.

Like most people here, I had my "highs & lows" in my therapy so far, BUT........compared to NO therapy, every night has been total BLISS. I don't miss those pre-therapy days of falling out of bed 4/5 times a night, or going the bathroom 7/8 times a night, or falling asleep standing up over the stove while cooking dinner!

First let me say that I don't give up. Not ever.

I am 100% compliant since I started this living hell almost 4 months ago. I never had any symptoms except for the stopped breathing during the night. AND I never knew it. ALWAYs got good sleep, felt refreshed and full of energy in the mornings and all day.

Then I was coerced into taking a silly sleep study.

I no longer sleep all night, I ALWAYs feel like taking a nap, feel tired, out of energy, irritable.

But hey! The doc and DME say that my detailed reports from my VPAP Auto SV are picture perfect and I'll live! Now I think I know what the rest of you felt like before you began this..

Well, since we're telling stories here, I'll toss my story out again here as well. First, if I hadn't found this forum, learned about data from my machine (I started with an S8 Elite, fully data capable, but didn't know how to retrieve it—my RT told me that ONLY DME's and clinics could purchase the software!!). After more than a year (July 2006 – October 2007), even though I'd used my machine every night, I still felt tired, still felt that I wasn't getting recuperative sleep. My doc never scheduled a follow-up appointment . . . Then, I found cpaptalk.com. First thing I did was purchase the card reader and software. The machine showed my AHI for the previous 6 months, averaging 9. My pressure was prescribed at 6, and I had no idea how to change it (RT held that information as TOP SECRET). I decided that I wanted an auto machine that would enable me self-titrate, got the M Series Auto A-FLEX in October, 2007. Well, turns out that my required pressure "sweet spot" is 12. After experimenting with masks, humidifiers, getting my leaks under control, my AHI now averages 0.4 Most importantly, I just feel GREAT!! Consistently sleeping well, 8 hours of restful sleep. I feel rejuvenated, energized. So, I humbly submit that ALL CPAP users should take control of their therapy, should change their own settings. Had I not done this, I'd be continuing the useless therapy I began with. Well, that's my story! Three cheers for cpaptalk.com and all of you wise old-timers who saved my life (or at least lengthened it!).

I have been eternally thankful that my first night on CPAP changed my life!! I went from 11-12 hours in bed each night then a 2-3 hour nap, to 8 hours SLEEP then up and going strong all day. I even started noticing where my arms and hands were when I went to sleep, as I found them there 8 hours later. It was a miracle!!! Now, 5 years later, I find that life goes on. Things change!! I've been diagnosed with depression and often confuse those symptoms with problems in CPAP therapy. It's made me get much more involved in my therapy. In the long run, it's been a good thing that I question the CPAP therapy. It's improved in new ways. It's led to an improved quality of life. The moral: Adjusting to Therapy is an ongoing concern. Stay up with it!!!!

Hi amrosa and all,

Thanks for responding to my post in such a thoughtful and detailed manner. I'll answer your questions and let you know where I am now. I'm doing somewhat better; I think that my "sleep architecture" is changing in response to sticking with the CPAP 8 hours/night since October. My hypopneas currently average around 6/minute, which I understand is approaching normal with my machine. Where I was at a 1/10 in terms of alertness and energy when I posted Feb 22, I'm now at about a 3 for energy and alertness; some improvement!

Slightly overweight, and I find it hard to loose weight when my body's cortisol is high all night due to "fight or flight" from low oxygenation. Low energy, but I've started walking, which is helping some, so I may be able to start more exercise in the near future. Don't drink, don't smoke. Have machine in CPAP mode on 9.2 since I've read also that CPAP can be more effective in controlling than APAP. I did have a sleep titration study in October, which advised that I set the machine at an air flow of 5. I've learned how to get into the "clinical" mode of my machine, and I've experimented (with my MD informed) with raising the settings to a max of 9.2. If above that I start mouth breathing. I tried a stimulant med, but found it to cause anxiety and heart pounding without raising my alertness--not worth the side effects.

When I asked my sleep doc if I could try testing my oxygen saturation for a few nights to see what it's doing (need an order to rent the oximeter from my DME) he suggested that I have another sleep study, which I had two nights ago. I'll meet with him in a couple of weeks to get the results, but the sleep technician suggested that the results indicated that I do best at a CPAP with air flow at 11. I tried 11 last night, lots of mouth breathing and the hypopneas went up to 15. Will adjust back down to 9.2 until I meet with the sleep doc.

My plans: Meet with sleep doc to discuss options. I like your idea of changing my mouth guard to one that adjusts my jaw. I want to stay away from surgeries.
Consider the chin strap/polident strips idea. Don't want a hybrid mask if I can help it.
Keep walking, start exercising.
No matter what, stay with the CPAP. I won't go to sleep without it now!

Thanks again for your encouragement; I'm going to keep on working at it until I find what works for me to be in "mental zest". So glad to have this site!

Happy Sleeper

I was one of those people who had it super easy. For some reason, the mask itself never bothered me. The machine was scary at first, just looking at it, it kind of scared me. But that was really just to look at it. Once the mask was on and I was in bed curled up, I never really had any issues sleeping.

So far my only real problem has been allergy season. I never could get the chin strap to work out for me. Why a chin strap bothers me and a mask doesn't, I will never know But I have increased my allergy meds and that has seemed to cut out the mouth breathing for now

My Dad, on the other hand, had a really hard time adjusting to his mask. He even tried a different one, but went back to the old one. For him it took a couple of months before he was really comfortable with his therapy. And he can wear his chin mask with no issues.