Idiopathic Hypersomnia Diagnosis

[Danlo67]

Hi all.

I had my appointment with my sleep specialist today. I had an overnight sleep study done with an MSLT test on December 3 last year.

Got the results today. Not good. I have been diagnosed with Idiopathic Hyersomnia along with my sleep apnea.

There are several drugs available apparently to help with daytime drowsiness and sleepiness. But to get the one the specialist gave me a sample of today it's $150 a script that lasts a month. Way out of my price range.

The study I did I slept 342 minutes and I was supposed to sleep 360 minutes. So I fell short of the Criteria for getting the drug on PBS which means instead of getting a month script for $5.50 I have to pay the $150 a script till I have another study where I sleep the full 6 hours (360 minutes).

I don't want to try the drug and find it works then I can't get it because I can't afford it. I've also read up a little on Hypersomnia and it basically says that drugs are mostly not effective long term.

Has anyone had any experience with this condition and what the best approach is to tackling it? I know it's not curable but I have 15-20 working years ahead of me and I am having a hard time trying to stay awake for the 8 hours a day and be effective. No matter how much sleep I get at night or how many naps a day I have.

Any thoughts? Anyone? Please?

Regards

Anthony

Sent from my Kogan Agora 8 using Tapatalk
Dreamstation Auto Nasal Mask
Pressure Setting at 9-20 cm H20. currently. Still working on getting AHI below 5

[zonker]

bump

[jnk...]

I am of the school of thought that "hypersomnia" (which basically means, 'often very sleepy' or, 'needing to sleep many hours') can't be called "idiopathic" (which basically means, 'without a known cause') until it is established that AHI is fully under control for anyone who has ever been diagnosed OSA, since OSA is a known cause for a need for optimizing treatment of sleep-breathing.

Did you ever find a minimum pressure that got your AHI consistently below 5, as reported in machine data? If not, that would likely be the most productive direction for further exploration, in my opinion as a fellow layman. Once AHI is as low as possible, then exploration and strict application of the principles of sleep hygiene (habits involving preparation for sleep), optimizing sleep environment, investigating drug types and dosage amounts for comorbidities, etc. would come into play.

Drugs for fighting sleepiness can obviously become necessary for some at times. But it is rarely a useful long-term approach. And it is vitally important not to give up on finding actual causes and actual treatments of actual sleep issues before it is unilaterally declared by anyone, patient or doc, that the point of no further investigation has been reached, in my opinion.

Sometimes treating, or otherwise lessening, a symptom (such as sleepiness or many hours of sleep) is all that there is left to do. But that is not true medicine in the strictest sense, unless it is for pain that absolutely can't be stopped at the source.

Hopefully the above gives you some ideas for further conversations with your medical people. I often hesitate to comment on posts such as yours because docs may consider "idiopathic hypersomnia" to be an actual diagnosis in the sense of getting some drugs paid for or giving a patient something to report to employers for getting a patient some compensation; however, in my personal view, in another sense, "idiopathic hypersomnia" is often just a way for a doc to say that no actual diagnosis for treatment has been made, so 'we'll just call it this.' It can be a touchy situation with many repercussions. So tread lightly with eyes as wide open as possible in your condition. But make sure AHI is under control, and use this forum to the extent you can to accomplish that.

You may want to post some more SleepyHead charts for comments here.

And may things go well at the Maroochydore camp.

[Danlo67]

Thanks jnk.

Don't think there's any point putting up data. I've been on cpap for 13 months now and pressure is 13 and that has consistently kept me under 5 ahi. My ahi was 46 originally at diagnosis.

I also have a routine of 10.30 - 11 pm to bed and 6.15 am rise and that changes very little.

The last overnight study lights out at 10 pm and they woke me at 7 am but I still only officially slept 342 minutes.

The mslt showed sleep latency falling in Hypersomnia range for all 4 naps and I felt like I didn't actually sleep in any of the naps.

Specialist is pretty certain it's Hypersomnia whether idiopathic or not he and me don't know I guess.

My concern is that I have good sleep hygiene. Ahi is under control and I'm still almost falling off my chair at work from sleepiness and I get the uncontrollable yawns between 3-5 pm virtually every day. Not a good look at work. I also still get headaches and occasionally morning headaches and I've still got years ahead of work.

I need to find some way of getting on top of this, hopefully without drugs, as I can't go on like this forever more.

Thanks again for the input

Anthony

Sent from my Kogan Agora 8 using Tapatalk
Dreamstation Auto Nasal Mask
Pressure Setting at 9-20 cm H20. currently. Still working on getting AHI below 5

[jnk...]

Don't think there's any point putting up data.

You won't know until you do.

consistently kept me under 5 ahi.

Let's see how low you can go, then, in case that helps. Maybe some exploration of higher pressure, which may require bilevel or autobilevel modality, is in order, if CPAP isn't cutting it for you, for example.

mslt showed

You already knew you were sleepy.

Is the sleep environment quiet and the right temperature?

Any drug issues or drugs for comorbidities?

Health problems?

Chronic pain?

Grief, or relationship stuff?

A particular stress that is overwhelming?

Other?

The answer to "why is my sleep bad" should never be "because my sleep is bad." At least, not until that is the only possible answer left.

Unfortunately, there often is no simple pill to take that will fix sleep. It sometimes takes putting in sustained work to troubleshoot. You've stuck with CPAP with 13 months, so you've definitely got what it takes to keep going on this fix-sleep journey. Keep trying things one by one in a logical fashion. This board will keep throwing suggestions at you for as long as you can tolerate us.

[kteague]

First let me say jnk's post well expresses my thoughts on difficult to diagnose situations.

Some questions for you - Was your MSLT performed while using your CPAP? Do your studies make any mention of limb movements?

[jnk...]

Excellent questions from kteague.

And my understanding is that the answers should be in the report from the PSG that should have preceded the MSLT, if things are done there anything like here.

The MSLT must be performed immediately following polysomnography -- Point 2 of Box 1, Recommendations for the MSLT Protocol, Practice Parameters for Clinical Use of the Multiple Sleep Latency Test and the Maintenance of Wakefulness Test -- https://aasm.org/resources/practicepara ... sltmwt.pdf

[Gryphon]

Keep in mind as well that "Under 5" may be the quirky gold standard for Medicare or insurance to say your treated, or if it's over 5 your condition officially qualifies as needing treatment.

However... if your keeping it say... just under 5... or 3 etc... That's still like having some one poke you with a stick 3 or 4 times per hour all night as you sleep.

You could also have other issues that didn't present during the night of the sleep study you had. Sleep studies are not the end all and be all - they're a look at one night, usually in a odd place that your not used to. As an example I've had two sleep studies with drastically different results..

I had my first sleep study done 10 years prior to the study that diagnosed me officially. That sleep study was what I call a dumpster fire as it was a complete failure. I had one of my weird nights were I close my eyes and open then and it's morning... That only happens to me maybe once a year. The people who looked over my study said it was inconclusive... I may have never gotten any REM sleep, I'll never know as I was like 17 or 18 years old and no where near as knowledgeable and willing to go to bat for my self at the time. I've not been able to get my records from the first study so I'm tossing it up to just dumb bad luck and moving on.

When I had my second sleep study done... I was a mess... I'd fall asleep standing on my feet and almost fall to the floor. I was completely exhausted all the time no mater how much sleep I got. If I was working on something at the computer and had a sleep attack I would experience forced micro naps and hallucinations. I was well aware they were dream states occurring at the same time as I was awake so I wasn't concerned I was crazy, but when your dreaming while your awake, or at least when it feels that way it's time for a change.

I joined this forum and started soaking up everything I could learn about CPAP and Apnea... Went in for my second sleep test and bingo. Had a normal night for me. They came in and woke me up and put the mask on me and we continued till morning. They woke me up at 6 am and when I put my feet on the floor and looked around the room... I had never been that clear headed and aware of what was around me after waking up in my whole life. I still had to wait 3 weeks for my first machine after that.

For me personally if My numbers arn't almost perfect I'll still have problems with sleepiness during the day though nothing like before treatment. That's why I fought to get a Bi-Level machine after doing more research about my situation. (This was a good change for me personally, but may not be for everyone) My numbers were good with normal APAP - but they were still in the mid 3's to 4's and on bad nights in the 7 and 8 range. With my Bi-Level I'm averaging an AHI of under under 1 with fewer bad nights that are in the 3's.

My health It's a million times better then it was before XPAP treatment. I've never nodded off while driving since. Even on long distance trips in excess of 16 hours. Driving like that before my Apnea was treated would have been insane if not suicidal. You need to get your numbers really low and look at the detailed data to see if you see any indications of sleep disturbances that may not show up on your machine. You could still be sleeping a lot but for one reason or another not be getting restorative sleep.

I would want to look at your data with a program like sleepy head to see if there is anything else you can understand from the details. Just because your machine says your AHI as a whole is lower then 4 or 5 doesn't mean there isn't room for improvement or information that the machine is holding onto that could let you know there is an issue you can help fix. Just seeing your AHI as a number, doesn't tell you a whole lot as well.

Still I'd also share with the doctor your experiences and see if there could be any other issues causing your excessive daytime sleepiness. Though I would try and rule out as much as possible any sleep related issues before going down any rabbit holes.

I wish you the best of luck.

Rest well,

Gryphon

[jnk...]

Some further food for thought on IH and MSLT.

Here are the conditions in the spectrum of "central disorders of hypersomnolence," as of 2015:

Narcolepsy type 1
Narcolepsy type 2
Idiopathic hypersomnia
Kleine-Levin syndrome
Hypersomnia due to a medical disorder *
Hypersomnia due to a medication or substance *
Hypersomnia associated with a psychiatric disorder *
Insufficient sleep syndrome *

-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4694150/

Red asterisks added by me.

* Would everyone in this room who (1) has no medical disorders; (2) uses no medically active substances, including coffee or beer; (3) has perfect psychological health, whatever that would look like; and (4) always gets enough sleep please stand up??!! I didn't think so. Thank you.

That same discussion also states the following:

"A polysomnogram immediately precedes the MSLT to ensure a sufficient amount of sleep (≥ 6 h) and to rule out other sleep disorders, and sleep logs and/or actigraphy are recommended the week before to document habitual sleep times and rule out insufficient sleep. All stimulants and REM-suppressing medications should be discontinued 2 weeks before the test, . . . The MSLT . . . is not without flaws. . . . While MSLT test-retest reliability is high in patients with narcolepsy with cataplexy restudied within 3 weeks, in clinical practice, test-retest reliability of the MSLT in narcolepsy without cataplexy and IH is poor. More than one-half of subjects with these disorders are given a changed diagnosis on repeat testing." -- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4694150/

Color added by me.

That is MORE THAN one half get the diagnosis changed on repeat testing! Stated in English, that means a single test is more likely to be inaccurate than to be accurate, in practice. Even, apparently, when done "correctly." So, yeah, maybe that's a test that is great for screening for one form of narcolepsy. Otherwise, not so useful, in my uneducated opinion from where I sit. (That's right. I didn't stand up either. )

Bottom line, then?

"There is currently no broad approach to treating residual EDS [excessive daytime sleepiness] in patients with OSA. Individual assessment must be made of comorbid conditions and medications, and of lifestyle factors that may be contributing to the sleepiness." -- https://www.sleep.theclinics.com/articl ... 6/fulltext

Or for another summary:

"If residual sleepiness remains, despite CPAP, further diagnostic investigation must be carried out. Firstly, it must be assessed whether the treatment is fully effective . . . by examining flow limitations under treatment (polysomnography) and whether it is sufficiently used (>6h/night). If this is the case, the possibility of other situations responsible for excessive daytime sleepiness must be reviewed and eliminated, whether they are depression, sleep insufficiency, use of intoxicants, obesity, restless legs syndrome, or circadian sleep-wake cycle disorder." -- https://www.ncbi.nlm.nih.gov/pubmed/29454715

For a well-written article on IH, though, this does nicely, IMO:

https://www.alaskasleep.com/blog/what-i ... ing-sleepy