Sunosi - New Treatment for Excessive Daytime Sleepiness due to OSA

[staphkiller]

Hi All,
Just got back from my sleep doc and he prescribed me Sunosi. It's a new drug from Jazz Pharma that treats Excessive Daytime Sleepiness associated with OSA. I've tried Provigil, Nuvigil, and Ritalin... all with horrible side effects. I haven't taken Sunosi yet, so I'm wondering if anyone else has tried this?

Thanks,

JRS

[Miss Emerita]

No experience with this drug, but eager to hear about yours once you start.

[Goofproof]

Most of us here just use Air, (XPAP). It's clean (Usually), little side effects, once we get our sleep with xpap correct by using data and getting help from people here that know how treatment works. Jim

[chunkyfrog]

Hi All,
Just got back from my sleep doc and he prescribed me Sunosi. It's a new drug from Jazz Pharma that treats Excessive Daytime Sleepiness associated with OSA. I've tried Provigil, Nuvigil, and Ritalin... all with horrible side effects. I haven't taken Sunosi yet, so I'm wondering if anyone else has tried this?

Thanks,

JRS

Look up the side effects online.
They are usually listed by frequency.
Have you investigated behavioral modification?
Drugs can lead one down a dark, cold rabbit hole.

[Julie]

"SUNOSI does not treat the underlying cause of OSA and does not take the place of any device prescribed for OSA, such as a continuous positive airway pressure (CPAP) machine. It is important that you continue to use these treatments as prescribed by your healthcare provider."

From Googoo of course... along with lots more on it...

[Pugsy]

Never heard of it.
Maybe some of the forum members have tried it and just not mentioned it.
If not....you are the new forum guinea pig.
Please do keep us posted as to how it compares with those usual other EDS meds.

[Goofproof]

Never heard of it.
Maybe some of the forum members have tried it and just not mentioned it.
If not....you are the new forum guinea pig.
Please do keep us posted as to how it compares with those usual other EDS meds.

Lucky for Her/Him better a Guinea Pig than a Turkey this Season. Jim

Better living thru Chemistry, or not!

[Pugsy]

Never heard of it.
Maybe some of the forum members have tried it and just not mentioned it.
If not....you are the new forum guinea pig.
Please do keep us posted as to how it compares with those usual other EDS meds.

Lucky for Her/Him better a Guinea Pig than a Turkey this Season. Jim

Better living thru Chemistry, or not!

You know I am not one to diss what a patient and their doctor might decide to do in some extenuating circumstances. Not my job.
I happened to have a really horrible day yesterday due to some extenuating circumstances of my own and all I can say is if I were to feel like that every day then by damn I might try this new drug too.

We don't know the whole picture and can't know..... and if a patient and his doctor elect to make a choice of this type of medication...they are both adults and there is a time and place for just about everything out there. Maybe this is the time and the place for this particular person.

Sometimes the most perfect OSA therapy simply doesn't give us the energy we need or want and sometimes the need to sleep is overwhelming strong and sometimes that need simply has to be curbed.

OP is an adult and I am sure that he and his doctor have discussed in detail the need and potential problems with this type of medication. I assume also that all other potential causes have probably been exhausted. Probably long before the trials with the other EDS meds. An informed educated decision was made to try it.
It does come with some baggage....now will that baggage help with the baggage that comes with EDS...unknown but the nice thing about trying something.....if it doesn't work you don't have to take it anymore.

[Goofproof]

True, I may be too careful, I've been messed up by too many doctors and chemical companies over the years. Every time I get a fill from Caremark they send me two trees worth of paper with all the problems drugs can cause listing problems that seem worse than the cure, not counting the killing of two trees. You would think a big company like them could at least print on both sides of the paper.

The paper they ship me weights more than the drugs, and they ship 90 day supplies in bottles that could hold a years supply. Big Business asleep at the wheel.... Jim

[chunkyfrog]

My "favorite" side effect: anal leakage.
And I think this was on a drug for depression . . . that would depress me even worse.

[staphkiller]

the drug had to be special ordered. I'll let you all know what the outcomes are. Nuvigil was the worst. Side effects made me want to die. I've been on CPAP for ten years. I've tried them all (drugs), but getting through the day as a zombie is just not tolerable. 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. We shall see... I'm well acquainted with the all the crazy side effects out there. I work at a large pharma.

[palerider]

the drug had to be special ordered. I'll let you all know what the outcomes are. Nuvigil was the worst. Side effects made me want to die. I've been on CPAP for ten years. I've tried them all (drugs), but getting through the day as a zombie is just not tolerable. 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. We shall see... I'm well acquainted with the all the crazy side effects out there. I work at a large pharma.

Let's approach things properly...

Post some charts from your apap.
wiki/index.php/Sleepyhead:Organize
but use Oscar.

[zonker]

the drug had to be special ordered. I'll let you all know what the outcomes are. Nuvigil was the worst. Side effects made me want to die. I've been on CPAP for ten years.

i've got to agree with palerider. please post some charts so that you can get some advice from the experts here.

it sounds to me as though your cpap therapy hasn't been optimized. if you can show us some data using the oscar software, perhaps people here could give you advice to correct that. in my opinion, you shouldn't be suffering all these years of being tired.

good luck!

[kteague]

Hello and welcome. I encourage you to make the effort to check your machine data for possible clues. You'd be surprised how clueless some sleep providers are, and since anything under 5 AHI is considered "normal" one could fit that category and still have a miserable amount of wakeups each night. Maybe there is something yet to be done to make your CPAP experience better. I saw in another thread (I think) where you mentioned your wife likes when you wear it - does "when" mean you don't always wear it? And you added that you don't (like when you wear it). Is there something about your equipment that is causing you trouble? Maybe we could offer some tips. Early on in my treatment I used Provigil for a while. Sometimes you gotta do what you gotta do. Just guessing that in all these years the doctors have ruled out other contributors like medical conditions, medication side effects, nutritional deficiencies, and other sleep disorders like limb movements or narcolepsy? For me it was another sleep disorder (PLMD) causing my persistent daytime dysfunction, along with a vit D deficiency. Addressing those things made a world of difference, but if I were holding down a job or driving much, I could still use some "assistance". Best wishes in achieving some resolution for your symptoms.

[ChicagoGranny]

Let's approach things properly...

Post some charts from your apap.

+1
The sleep-doctoring industry is not known for getting their patients' CPAP therapy optimized. A patient can easily visit a doctor over and over for ten years and still have suboptimal CPAP therapy.

OP is an adult and I am sure that he and his doctor have discussed in detail the need and potential problems with this type of medication. I assume also that all other potential causes have probably been exhausted. Probably long before the trials with the other EDS meds. An informed educated decision was made to try it.

I'm more skeptical. Although it's starting to change, much of our medical culture is "Patient: Give me a pill to make me better. Doctor: OK, here's a pill to get you out of my office."

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

I've tried them all (drugs)