Sunosi - New Treatment for Excessive Daytime Sleepiness due to OSA

staphkiller wrote: ↑

Mon Nov 25, 2019 8:45 pm

I've tried the diet/exercise/yoga/warm milk/alcohol... you name it. Nothing keeps me awake enough to be a productive member of society. Double espresso. That'll keep me awake long enough to drive home safely. But the doc says he would like to ween me off caffeine.

PaleRider is correct. The next step is to use OSCAR and forum members' help to make sure your CPAP therapy is optimized.

As far as good sleep hygiene, you've tried a lot. But, you might find something in this checklist that has been overlooked ---->

Good Sleep for CPAPers

- Practice good sleep hygiene (Google it and read several sources; ignore extreme advice.)
- Eat a good diet
- Have a regular, moderate exercise program
- Try to avoid daytime naps
- Practice total abstinence of caffeine including sources like chocolate (sigh)
- Review all medicines, vitamins and supplements you are taking to make sure none are interfering with sleep
- Use the bedroom for sleeping (and sex) only, and make sure the bedroom and bed are comfortable.
- Learn to appropriately handle emotional stress in your life
- Do not listen to your breathing or the sound of the machine as you are falling asleep. (Some people, including me, actually find listening to their breathing and the sound of the machine to be relaxing.)
- Distract your mind by thinking of a pleasant, relaxing activity that you enjoy.
- If you are awakening at night, do not be too concerned. It is actually a normal part of sleep. (It does become a problem though for people who, when they awaken, become frustrated and have difficulty returning to sleep.)
- Use CPAP software, such as the free OSCAR, to make sure your therapy is optimized
- If you still don't feel or sleep well, make sure you have regular medical checkups to confirm there are no other medical problems

This is a checklist. Some of the things you already do. Some are easy and can be done right away. Others you can work at over time.

CG

BTW, when you make additional posts, please stick to this thread so that people helping you can easily see your history.

Welcome and good luck!

ChicagoGranny wrote: ↑

Tue Nov 26, 2019 8:04 am

This might very well be a case of throwing things on the wall to see if anything sticks ---->

It could very well be just that. But if it were me I would tell you "it's my wall to throw things at". It's my right to do it.

My point with what I said above is that we shouldn't be just automatically be dissing what someone has decided to do.
We don't have all the facts but a lot of times without all the facts we still come out with guns ablazing about the evils of these types of medications. We have to respect other people's point of view even if it is totally opposite from our point of view.

Often the members here talk to people like they are stupid and have zero common sense (and rightly earned in a lot of cases )
and we sort of bypass the original question and go into a long sermon about doing something else.
I cringe when I see people talking down to people....no matter how much they deserve it. I realize it is just the way some people voice their thoughts and opinions and I have to let it slide but I cringe nonetheless. I know how much I hate it when someone talks down to me.

Maybe the sleep doc hasn't made sure the OSA is well treated....but maybe he has. We don't know all the facts. We do know that statistically about 20% of the people put on cpap and who do appear to be successful with it using all the known guidelines like AHI, leak, management, hours of sleep, quality of sleep, etc....still end up with EDS. It can happen.

I tend to try to answer the original question and not go into long sermons about the other stuff unless the person asks about alternatives.
Or maybe I will answer the question and then go into a sermon. I try not to degrade a person for making a choice to do something that is a choice I wouldn't personally make for whatever reason. That's not my job. This is supposed to be a support forum...not a tear down of ideas forum without knowing all the facts.

And if we must tear down an idea....do it gently without derogatory phrases or insinuations or name calling. That helps no one and potentially hurts someone. Why hurt someone when there is a softer approach available. Save the 2 X 4 for when it really is needed.

Climbing down off my soapbox...back to your regularly scheduled entertainment.

I have used Provigil in the past. I had to choose between being sleepy or having a headache as that is what the Provigil did to me. It was very helpful to let me keep functioning while we figured out what else was causing sleepiness. In that case it was an antidepressant. Switched to a different one and soon I no longer needed the Provigil.

Sometimes meds help you get to a better state.

Clearly the wall needs a new coat of glue, if nothing has stuck to it after ten years. I hope you find some strong long lasting glue, whatever brand you choose. Jim

sleepye wrote: ↑

Tue Nov 26, 2019 10:17 am

. . .
In that case it was an antidepressant. . . .

So good that your doctor had the ability to look for the root cause.
Too many doctors just throw darts,
under the assumption that the patient doesn't have a problem--but IS one.
Hopefully the OP's doc is earnestly pursuing the REAL cause of his EDS.

I'm seeing this as a type of drug that helps with the heavy hitting lethargic lack of energy going to fall asleep on my feet feeling, even when OSA was being well treated.

I've always had narcoleptic like symptoms even after treating my OSA, they got a whole lot better after treatment but they're still there. I've been doing my best to counter act the few times during the day were my energy drops, like a puppet with it's strings cut, with caffeine. I have to have my coffee or I'm doomed. I make sure to stop before early afternoon so I'm not jittery by bedtime.

If there was a med I could take to help balance out those lows with a little time released energy I'd be interested. I know that there isn't a pill known to man at the moment that's going to hold my airway open all night... unless I swallow a PVC fitting but then... that would be a really big pill and a tad uncomfortable.

As others have said I'd want to make sure my PAP machine was dialed in right so my treatment is as good as it's going to get, then look around to make sure there aren't any environmental factors, having our 4 cats sometimes use my body as part of a total house race track at 3 am might be causing some disturbed sleep now and then. LOL Mostly though they're just self sustaining heating pads that happen to purr.

I wish you the best of luck and do look forward to hearing how things go after you've had some time to experience life with the new meds.

Best of luck, and rest well.

Gryphon

So, I'm back. I've been using Sunosi for about a month. I kept meaning to come back and report, but ... December... that's a busy month and the family and I went away for a week after Christmas. Nonetheless, I've caught up with the posts and will try the OSCAR app when I get home on my personal laptop. Forthwith, ... my report.

I was extremely wary of trying this new drug. My wife was not supportive since this was very new (I am actually the first patient in the practice to use it) and there wasn't a lot of data on the drug. However, I proceeded with this therapy. I will summarize a months worth of observations. I did not experience any outward adverse events. No side effects. This was a big deal for me since I had horrible side effects with Nuvigil and Provigil. Nothing. No headaches, no intestinal discomfort, no rashes, no insomnia... none that I could discern. There were no adverse changes in glucose or insulin effectiveness. No measurable difference in blood pressure readings. I don't know about blood chemistries other than glucose. That was not checked. I asked my endocrinologist about the drug and she did not know of any contraindications for my condition (diabetes II).

I am taking the lowest dose (75 mg), daily in the morning. I have noticed a remarkable change in my excessive daytime sleepiness. I no longer have the compulsion to nap around the 11:00 AM time frame, nor do I feel sleepy at the 2:00 PM drag. I am able to focus during meetings throughout the day and do not nod off at stoplights on the way home. I do still feel tired around 5:00 PM to 8:00 PM and will take a nap, but it's only for about ten minutes rather than an hour or more. My sleep habits at night have not changed (still never enough sleep). We did change my mask to the DreamMask (or whatever it's called since mine doesn't stay in place anymore). I do not feel jittery or overly excited like I did with Nuvigil. Bottom line: I don't feel like I'm using amphetamines, yet I'm staying awake like normal people and am able to do my work more effectively and be more "there" for my family.

I went to my sleep doctor today for a follow up. Everything was good. My "sleep numbers" improved (self survey). We talked about increasing the dose, but decided to stay the course. Additionally, this is supposed to be an "as needed" med, so we agreed to not take it on the weekends. My first month on the drug is encouraging. However, due to the response I got last November, I will post my charts (hopefully tonight).

Thank you all for caring. I will try to be more proficient with my posts.

Kind regards,

JRS

Hi all,

Attaching my screen shot of yesterday's CPAP results (or rather, last nights).

Thanks,
JRS

Any particular reason you've left the min. pressure setting at 4, the machine's default low and a level most people find inadequate to breathe at? I would raise it to at least 6 or 7 and see if you feel better and if AHI improves.