Idiopathic CNS Hypersomnia

[temporal1]

Hypersomnia Foundation / IH or ADHD? .. or .. ?
https://www.hypersomniafoundation.org/a ... h-or-adhd/

Life rolls along.
My adult daughter has complained about “not sleeping” since she was a teen.
In her teen years, i chuckled about it, ‘cause, i checked on the children once or twice every night, she was consistently sound asleep! i admit, i was puzzled. teens need lots of sleep, i shrugged it off.

She was told they believe symptoms often begin in teen years, but, as we did, symptoms are overlooked. This is not something that is well researched.

Time has passed.
She’s lived with lots of symptoms of “something,” but, nothing ever seemed to add up to anything that could be identified. Sleep complaints continued. Even tho she sleeps!

At last, she went for a 24 hour sleep study a few weeks ago.
Not to belabor, they came up with “Idiopathic CNS Hypersomnia.”

So, she begins this path.
It seems, some “mysteries” in her life may have a chance to be understood+resolved as not before!

It’s proven, inadequate sleep can mimic symptoms of lots of other problems/disorders.
i was glad she decided to begin with the sleep study. Why go through all sorts of tests/treatment, possibly including drugs, only to learn inadequate sleep is the culprit?!

If this is the case, i expect it will take months, or maybe a year, to work through it.
After all, at this point, some of this, going on for 20+ years, would be her “normal,” there may be some awkward adjustments to truly get to a new place.

It’s worth a try.
This could be a great improvement in her quality of life.
She has struggled with headaches, exhaustion, inability to focus, chronic “pushing herself,” beyond what seemed necessary, etc. All while appearing to be the picture of health.

i’ve known just a few people who have had sleep studies.
they ended up with C-PAP machines, and say they feel much better. we anticipated this.
this is not that.

Wondering if anyone here knows anything about it?

[MaxPC]

It's an uncommon diagnosis but then there wasn't enough known about it for years in order to get a proper diagnosis which would explain the low diagnosed numbers.

Only in the past 25 years or so has more research been available. It does require a differential diagnosis (in which other causes are ruled out) and that becomes easier as the patient gets older. Teens with IH have so many other factors going on physically it makes diagnosis difficult. Sometimes drugs for narcolepsy have been prescribed as a help but hopefully they can do better than that with your daughter.

[temporal1]

It's an uncommon diagnosis but then there wasn't enough known about it for years in order to get a proper diagnosis which would explain the low diagnosed numbers.

Only in the past 25 years or so has more research been available. It does require a differential diagnosis (in which other causes are ruled out) and that becomes easier as the patient gets older.

Teens with IH have so many other factors going on physically it makes diagnosis difficult.

Sometimes drugs for narcolepsy have been prescribed as a help but hopefully they can do better than that with your daughter.

i did not anticipate 1 response to this.
evidently, there are lots of drugs used for narcolepsy.
her doctor said there might be 3-4. (maybe that he would consider?)
https://www.drugs.com/condition/narcolepsy.html

he told her she is “missing a transmitter” that would tell her she’s had adequate sleep.

so, if true, no matter how much sleep she gets, she does not feel she slept.
this pretty much describes her since her teen years.

i have no idea what may come of this. i don’t even know what to expect.
neither does she, neither does he.

doctors have answers for some things, but not all things.

[MaxPC]

I'm always cautious about pharmaceuticals that mess with the neurotransmitters. Your library will have an up to date PDR (Physicians Desk Reference) where you and your daughter can look up the different drugs by name and learn of their mechanisms of action as well as possible side effects. Always research each new prescription thoroughly is my mantra.

[temporal1]

2018

I'm always cautious about pharmaceuticals that mess with the neurotransmitters.

Your library will have an up to date PDR (Physicians Desk Reference) where you and your daughter can look up the different drugs by name and learn of their mechanisms of action as well as possible side effects. Always research each new prescription thoroughly is my mantra.

2022
just to update on this.
in my layperson’s view, after trying a couple of drugs to help with sleep, the one they settled on for a couple of years, i believe put our family on a nightmarish path that continues. i won’t bore with details.

i will say i regret ever encouraging the sleep analysis, at the time it seemed to make sense. everyone needs good sleep.
i couldn’t imagine what unfolded. (many are greatly helped, i believe that.) i believe this was an exception.

my personal takeaway:
doctors prescribing (psych) meds, controlled substances, in this case, for experimental purposes, should include family members in consultations! to have any hope of understanding the impact of those drugs. the entire family is impacted.

i’m pretty sure i got this view as a result of caring for my husband in his terminal illness for years.
i was with him at every doctor appointment, doctors listened to both of us. it seemed normal. it was vital.

in our case, i believe the doctor should have had input from her husband, young daughter, and, me, too, a frequent part of their home, and, i was the big encourager for her to get the sleep analysis! so innocent. so ignorant.

i believe the doctor was prescribing blindly without family input.
even occasional input, or ANY input, might have helped.
some drugs are addictive with scary side effects. the identified patient isn’t the only one affected.