Idiopathic Hypersomnia

Allessio77 · Post by **Allessio77** » Sun May 27, 2018 4:16 pm

My 6 month APAP anniversary is tomorrow and the therapy has successfully decreased my AHI from 30 to 1.2 (ave of last 3 months). I am totally compliant and wouldn't even think of going to bed without my mask and machine.

But my daytime sleepiness and fatigue and not abated much, and I have had workups for a lot of other causes of this condition, so the sleep doc is having me try Wellbutrin XL 150 mg as a daytime stimulant. I take it first think in the AM.

Does anyone have any experience or comments on this therapy? Has it worked for you? Does it have a positive reputation?

I still use my APAP since I we know that it is treating the apneas.

Goofproof · Post by **Goofproof** » Sun May 27, 2018 5:33 pm

Allessio77 wrote: ↑
Sun May 27, 2018 4:16 pm
My 6 month APAP anniversary is tomorrow and the therapy has successfully decreased my AHI from 30 to 1.2 (ave of last 3 months). I am totally compliant and wouldn't even think of going to bed without my mask and machine.

But my daytime sleepiness and fatigue and not abated much, and I have had workups for a lot of other causes of this condition, so the sleep doc is having me try Wellbutrin XL 150 mg as a daytime stimulant. I take it first think in the AM.

Does anyone have any experience or comments on this therapy? Has it worked for you? Does it have a positive reputation?

I still use my APAP since I we know that it is treating the apneas.

How would we or you know you are being treated successfully, do you use Software to monitor your treatment... Jim

TASmart · Post by **TASmart** » Sun May 27, 2018 6:58 pm

I took Welbutrin for several years. It did nothing to treat sleepiness, getting solid treatment with a CPAP solved the sleepiness. After a couple of years. Welbutrin started making me very short tempered and crabby. It did help me get over smoking though.

D.H. · Post by **D.H.** » Sun May 27, 2018 8:02 pm

I did notice that even though I was using the machine and felt much better, I was still tired. For a while I was taking Modafinil. It didn't do very much for me, so I discontinued.

After many years, I gradually stopped feeling so tired.

StuckOnRepeat · Post by **StuckOnRepeat** » Sun May 27, 2018 11:24 pm

What other efforts have already been made to identify other possible contributors to your symptoms alongside sleep apnea? I'm thinking of deficiencies of things like Vitamin D, Iron, B12 etc. And medical conditions including thyroid dysfunction, diabetes, mood disorders etc. Also medication side effects. Is there any reason to think you could have an issue with periodic limb movements, like restless shallow sleep, frequent wakings, and lots of position changes, particularly the legs? Of course making sure your cpap therapy is optimized is is first as resolving the known factors first just makes sense. In my mind, hypersomnia is idiopathic only if or until all possibilities have been ruled out.

Allessio77 · Post by **Allessio77** » Mon May 28, 2018 1:22 pm

StuckOnRepeat wrote: ↑
Sun May 27, 2018 11:24 pm
What other efforts have already been made to identify other possible contributors to your symptoms alongside sleep apnea? I'm thinking of deficiencies of things like Vitamin D, Iron, B12 etc. And medical conditions including thyroid dysfunction, diabetes, mood disorders etc. Also medication side effects. Is there any reason to think you could have an issue with periodic limb movements, like restless shallow sleep, frequent wakings, and lots of position changes, particularly the legs? Of course making sure your cpap therapy is optimized is is first as resolving the known factors first just makes sense. In my mind, hypersomnia is idiopathic only if or until all possibilities have been ruled out.

Before I began APAP, I had suffered fatigue and daytime sleepiness for about 18 months. My doctor looked into and eliminated:

Diabetes
Thyroid
Mood disorders (although if have have one Wellbutrin shouldn't hurt)
Barr Epstein
Vitamin D
Vitamn B-12
Iron
Prostate Cancer
Heart Disease
Brain MRI showed nothing abnormal.

Periodic Leg did not show in my PSG. My sleep was highly fragmented, but doctor blamed AHI of 30.

APAP was tried after all the above were investigated.

I do take a Statin Livalo.

My APAP has been very successful with the last three months averaging AHI of 1.2. I remain on the APAP.

I think my doctor gave me this diagnosis because of everything that has been ruled out. I hate the diagnosis of 'idiopathic" anything since it seems like giving up finding what is actually going on. Any additional avenues could be helpful. I am trying the Wellbutrin out of desperation.

Allessio77 · Post by **Allessio77** » Mon May 28, 2018 1:23 pm

D.H. wrote: ↑
Sun May 27, 2018 8:02 pm
I did notice that even though I was using the machine and felt much better, I was still tired. For a while I was taking Modafinil. It didn't do very much for me, so I discontinued.

After many years, I gradually stopped feeling so tired.

Do you have any idea why you recovered after such a long time? Do you think the PAP therapy just took that long in your case?

Allessio77 · Post by **Allessio77** » Mon May 28, 2018 1:26 pm

TASmart wrote: ↑
Sun May 27, 2018 6:58 pm
I took Welbutrin for several years. It did nothing to treat sleepiness, getting solid treatment with a CPAP solved the sleepiness. After a couple of years. Welbutrin started making me very short tempered and crabby. It did help me get over smoking though.

LOL...I'm short tempered and crabby now!!

Seriously, do you remember what dose you were on, if it was the XL or the SR version?

The doctor is doing the because after 6 months of therapy, she thinks there is something going on the my successful APAP treatment isn't helping.

Allessio77 · Post by **Allessio77** » Mon May 28, 2018 1:29 pm

Goofproof wrote: ↑
Sun May 27, 2018 5:33 pm

Allessio77 wrote: ↑
Sun May 27, 2018 4:16 pm
My 6 month APAP anniversary is tomorrow and the therapy has successfully decreased my AHI from 30 to 1.2 (ave of last 3 months). I am totally compliant and wouldn't even think of going to bed without my mask and machine.

But my daytime sleepiness and fatigue and not abated much, and I have had workups for a lot of other causes of this condition, so the sleep doc is having me try Wellbutrin XL 150 mg as a daytime stimulant. I take it first think in the AM.

Does anyone have any experience or comments on this therapy? Has it worked for you? Does it have a positive reputation?

I still use my APAP since I we know that it is treating the apneas.
How would we or you know you are being treated successfully, do you use Software to monitor your treatment... Jim

I use sleephead nightly and read it every day. The data I have mentioned if from SH. My charts are really boring with last month's range of AHI being 0.19 to 1.8 with 0% leaks.

Goofproof · Post by **Goofproof** » Mon May 28, 2018 2:32 pm

Allessio77 wrote: ↑
Mon May 28, 2018 1:29 pm

Goofproof wrote: ↑
Sun May 27, 2018 5:33 pm

Allessio77 wrote: ↑
Sun May 27, 2018 4:16 pm
My 6 month APAP anniversary is tomorrow and the therapy has successfully decreased my AHI from 30 to 1.2 (ave of last 3 months). I am totally compliant and wouldn't even think of going to bed without my mask and machine.

But my daytime sleepiness and fatigue and not abated much, and I have had workups for a lot of other causes of this condition, so the sleep doc is having me try Wellbutrin XL 150 mg as a daytime stimulant. I take it first think in the AM.

Does anyone have any experience or comments on this therapy? Has it worked for you? Does it have a positive reputation?

I still use my APAP since I we know that it is treating the apneas.
How would we or you know you are being treated successfully, do you use Software to monitor your treatment... Jim
I use sleephead nightly and read it every day. The data I have mentioned if from SH. My charts are really boring with last month's range of AHI being 0.19 to 1.8 with 0% leaks.

When it relates to Sleep Apnea, Boring is Good. I strive for boring. Jim Mine stays in that boring range too.

TASmart · Post by **TASmart** » Thu May 31, 2018 1:45 pm

Allessio77 wrote: ↑
Mon May 28, 2018 1:26 pm

TASmart wrote: ↑
Sun May 27, 2018 6:58 pm
I took Welbutrin for several years. It did nothing to treat sleepiness, getting solid treatment with a CPAP solved the sleepiness. After a couple of years. Welbutrin started making me very short tempered and crabby. It did help me get over smoking though.
LOL...I'm short tempered and crabby now!!

Seriously, do you remember what dose you were on, if it was the XL or the SR version?

The doctor is doing the because after 6 months of therapy, she thinks there is something going on the my successful APAP treatment isn't helping.

I really do not recall dose, it was midrange in the therapeutic range though. It was the SR version.

jnk... · Post by **jnk...** » Thu May 31, 2018 2:17 pm

How many of hours a night do you sleep?

How would you characterize the quality of your sleep?

How do you do with following all of the principles of good "sleep hygiene"?

Have you tried raising your minimum to stabilize your airway beyond eliminating apneas and hypopneas?

Have you tried using a single pressure high enough to eliminate events, if that is comfortable for you?

Are you using medications or other medication-like substances that could be contributing to the sleep issues?

Do you have other health issues that could be contributing to your symptoms?

Are there any other questions I could ask that could be as prying and irritating as the questions I just asked?

You can consider those questions rhetorical and as mere food for thought, if you want. Just throwing them out there as ideas for areas to pursue on the way to your solving your sleepiness issues.

And none of those questions are meant to imply any intent to blame the victim, since sometimes idiopathic conditions are exactly that and may remain so.

Allessio77 · Post by **Allessio77** » Thu May 31, 2018 7:05 pm

jnk... wrote: ↑
Thu May 31, 2018 2:17 pm
How many of hours a night do you sleep?

How would you characterize the quality of your sleep?

How do you do with following all of the principles of good "sleep hygiene"?

Have you tried raising your minimum to stabilize your airway beyond eliminating apneas and hypopneas?

Have you tried using a single pressure high enough to eliminate events, if that is comfortable for you?

Are you using medications or other medication-like substances that could be contributing to the sleep issues?

Do you have other health issues that could be contributing to your symptoms?

Are there any other questions I could ask that could be as prying and irritating as the questions I just asked?

You can consider those questions rhetorical and as mere food for thought, if you want. Just throwing them out there as ideas for areas to pursue on the way to your solving your sleepiness issues.

And none of those questions are meant to imply any intent to blame the victim, since sometimes idiopathic conditions are exactly that and may remain so.

Thanks for that Litany of questions...even though they may be rhetorical I will think through them...

I sleep about 7 hours per night, I think the quality is good. I have followed all 'sleep hygeine' suggestions that I have found.

I have optimized pressures but lowering IPAP and raising EPAP and my 3 month AHI average is about 1.2...which I consider pretty good (since my PSG was at 30)
I use a FFM and a cervical collar.
Most of my events occur under the max pressure but I have raised the max from 10 to eleven because SH tells be I am bumping against my max IPAP 6 or 7 times a night.

The only meds I take are Statins and Zetia for lipid control.

I believe there is a cause...it is the docs who are giving up and calling it idiopathic...I am trying to figure out what that may be...my original post list most of the medical conditions that I have investigated.

Just a note after 5 days of the Wellbutrin...I have to admit that I am more awake in the daytime hours!

Cpapian · Post by **Cpapian** » Fri Jun 01, 2018 10:12 am

Wellbutrin is often used to help people stop smoking. It can break a habit, so to speak. So maybe, it will break your habit of still feeling sleepy. ????

After about 4 months on my own machine, I started exercising. Having spent the previous two years (at least) on the couch, my body was out of tune. It was winter so I used the treadmill and reformer (pilates). My first experiences were fraught with little problems, but over time, I have built up speed and endurance. My old ballet teacher used to say "it takes energy to make energy". And it was true. We would drag our feet into class, then leave full of energy.

Sleep ....... recently read the book "why we sleep" an easy read and informative. The author recommends 8 hours of sleep, with the last two being very important. I think he likened sleep to a sculptors work. Moving between the stages of sleep, roughing out the work, then etching the more detailed aspects. So if you sleep only 7 hours, you are an unfinished piece of art.

TASmart · Post by **TASmart** » Fri Jun 01, 2018 11:02 am

Cpapian wrote: ↑
Fri Jun 01, 2018 10:12 am
Wellbutrin is often used to help people stop smoking. It can break a habit, so to speak. So maybe, it will break your habit of still feeling sleepy. ????

After about 4 months on my own machine, I started exercising. Having spent the previous two years (at least) on the couch, my body was out of tune. It was winter so I used the treadmill and reformer (pilates). My first experiences were fraught with little problems, but over time, I have built up speed and endurance. My old ballet teacher used to say "it takes energy to make energy". And it was true. We would drag our feet into class, then leave full of energy.

Sleep ....... recently read the book "why we sleep" an easy read and informative. The author recommends 8 hours of sleep, with the last two being very important. I think he likened sleep to a sculptors work. Moving between the stages of sleep, roughing out the work, then etching the more detailed aspects. So if you sleep only 7 hours, you are an unfinished piece of art.

HAs nothing to do with "breaking the habit of feeling sleepy" SSRI and related classes of drugs which Wellbutrin falls in by inhibiting not only serotonin but also dopamine, and norepinephrine can be stimulating or sedating. Welbutrinnis stimulating for most people. Because I was complaining of depression and tiredness ( turns out it was SA causing that), I got the Wellbutrin. But it also by being stimulating, caused my anxiety levels to skyrocket, causing the crabbiness and short temper. Not habits at all. It is believed that the reason it helps with habits is that habits cause the release of dopamine and resultant pleasure. By increasing the levels of dopamine the need to repeat a habit is reduced.

Idiopathic Hypersomnia

Idiopathic Hypersomnia

Re: Idiopathic Hypersomnia

Re: Idiopathic Hypersomnia

Re: Idiopathic Hypersomnia

Re: Idiopathic Hypersomnia

Re: Idiopathic Hypersomnia

Re: Idiopathic Hypersomnia

Re: Idiopathic Hypersomnia

Re: Idiopathic Hypersomnia

Re: Idiopathic Hypersomnia

Re: Idiopathic Hypersomnia

Re: Idiopathic Hypersomnia

Re: Idiopathic Hypersomnia

Re: Idiopathic Hypersomnia

Re: Idiopathic Hypersomnia

Machine	Mask

Additional Comments: Pressure 7-11, EPR = 1, Hum = 4, Hose Temp = 67

Machine	Mask

Additional Comments: Auto PAP; 13.5 cmH2O min - 20 cmH2O max