Conventional (and not-so-conventional) Treatments for Idiopathic Hypersomnia
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- Опубликовано: 1 авг 2019
- 2018 June - Lynn Marie Trotti, MD, MSc, HF Medical Advisory Board Chair, Associate Professor of Neurology at Emory University - “Conventional (and not-so-conventional) Treatments for Idiopathic Hypersomnia”
Dr. Trotti discusses conventional IH treatments of modafinil, armodafinil, and various stimulants as well as the not-so-conventional treatments of sodium oxybate, clarithromycin, compounded flumazenil, Levothyroxine, and transcranial direct current stimulation.
Since the recording of this presentation, a medication called solriamfetol has been approved by the FDA for the treatment of narcolepsy and sleep apnea. At this time, there does not seem to be any data testing solriamfetol use in IH, but in the future it may be used as a treatment for people with refractory IH (IH that is not helped by any of the current treatments).
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Some timestamps for those of us wanting to jump ahead to certain parts.
6:07 Modafinil
17:37 Stimulants
20:48 Sodium Oxybate (Xyrem)
25:41 Clarithromycin
31:44 Flumazenil
38:31 Levothyroxine
40:56 Trans Cranial Direct Current Stimulation
what is trans cranial direct current stimulation? I sleep all day and wake up at night, this happens every other day for the last 7 years. Extremely tired, does anyone have pressure in the back of their head from this
SUNOSI
@@mariaalvaro4630 I've been nocturnal since I was a child. Some1 labeled it Delayed Sleep Phase Syndrome. It got me out of jury duty.
@@KatrinaDancer my doctor got me out of jury duty he said I was catatonic, whatever that is, thank you so much I will look this up, bless u
are u on any meds
Love when they share the treatments, and then reflecting back on my treatment history and realizing that not only have i tried them all, none of them worked.
I fell asleep 15 times watching this video. I'm defeated
Lol 😂
you are not defeated, listen to the video on idiopathic hypersomnia
Having trouble myself. 😂
Having this problem sucks, and to make things worse doctors have no idea how to cure this problem.
I don't think they can cure it. They can only treat it. Usually by jacking you up on stims. It's great at first to be able to communicate with the rest of your head and not want to crawl into fetal every 2 hours for a nap. But over time the efficacy wanes. Life piles up around you. Yeah this problem sucks.
Edit: The only good thing about IH are the really cool lucid dreams I have. All in full color of course. Huge fish swimming in the air while tornadoes are spinning up all around me as the sky darkens. That kinda stuff. In many cases it's waayy more entertaining than real life. The absolute best ones are after I cease taking Ambien. There is no way Hollyweird could come even close to matching the special effects.
@@sempertard I too have many dreams, and they all seem so real
@@sempertard I think the dreams make it worse. My dreams are so much better than being awake. Waking up from a dream and only being 20% on makes the compulsion to want to just go back to sleep more intense. I'm fully on in my dreams, never when awake, save for the three of weeks when I first started armodafinil, now it just keeps me from falling asleep instead of waking me up.
katrina dancer just told me my problem is called Delayed Sleep Phase Syndrome, look it up
@@sempertard Look up Delayed Sleep Phase Syndrome
I have tried all of the medications in the initial list except Armodafinil and Xyrem. The only one that helped was Modafinil, but only when my symptoms were mild. Stimulants sometimes keep me awake, but I am too tired to do anything productive.
In my current episode, I am sleeping 20 hours per session and stay awake up to 12 hours between sleep. I was diagnosed with Narcolepsy after an EEG test as a teen 45 years ago. I have been and am otherwise much more healthy than my peers.
It sucks. I am thrilled to see that this is being researched, since every doctor I have seen has been baffled.
Armodafinil makes me Chatty Kathy, cannot stop yammering, on and on. Good luck if you try it
Thank you so much for posting this video! Very informative!
I accidentally self medicated my idiopathic hypersomnia with levothyroxine. I had not been diagnosed yet with IH when I went to Mayo Rochester. The doctor there said my thyroid medication was a little too high and to get a new lower prescription from my general DO when I got home. It slipped my mind and I never did. About five months later, changing nothing else, I realized I was sleeping less and had at least 50% improvement in sleep drunkenness.
About to try the same thing.
@@kristaoconnors8878 @citrineforme How has it been for y'all, is it still working?
for a long time i was using high levels of levothyroxine b/c it was the only thing that helped my excessive daytime sleepiness. i later found out that i have a norepi and dopamine deficiency so now i am on modafinil and have lowered my levo by 100mcg. it turns out the levo was triggering NE release from my adrenal glands. even cytomel would not help the sleepiness. for some reason on levo worked for that.
I have the sympthom of excessive sleepiness but I can't actually sleep , I get close to nREM sleep but I am still conscious and can't seem to get any sleep until my usual circadian rythm time about 10/11 PM . I don't hava catalepsy but the symthoms of sleepiness is acompanied with high pulse rate *(my cardiologist says I'm fine ), brain fog, though I can do IQ tests and other mental performance if I really want to , I have internal tremmors and sometimes hand muscle spams wich are involutary *( neurologist says I'm fine ) , I can exercise but I don't feel like it and I have red rashes on my neck and upper trunk that don't ich and they go away the next day or even in minutes. I tested for known alergies and I don't have any ,except NSAID's ( antiinflamatory nonsteroid drugs) wich I don't take when I am having an episode or otherwise,so I really don't get why they appear. Alergolosits say it's hives . I don't have "visions" or hallucinations but I am pretty worked up over these episodes wich can occur several days in a row and then stop for a month or more and reappear. It's a literal nightmare because I can't do anything let alone work when these happen and it's not just sleepiness, it mental fatigue like I haven't slept for days , although I slept 7 hours prior to this. It starts in the morning over 12 hours period continous until I sleep. I don't take drugs , I don't drink coffee , I don't drink ever alchohool , but I smoke cigs . Now I'm trying to quit, from 2 packs/day I managed to get to 1 pack.
Ritalin saved my life! Yes I was diagnosed with IH 15 years ago
Ritalin made me watch this whole lecture, without it I'd be asleep in 5 minutes, that's proof lmao.
What especialist can treat this?
sleep medicine? they prescribed me with Ritalin, after took for over months I had reaction went back and took it again looks like not working still sleep lots, not sure how am I going to work? I had sleep drunk ...
Anh Ngo Have they tried armodfinl?
a good neurologist is one place to start. I've been struggling with this for 45 years since I was 16. Keep at it Arthur, don't give up.
For me, I'm seeing a neurologist who is board certified in sleep medicine
@@sempertard have you found anything that helps you?
She is outta air! Breathe girl! BREATHE!!! Lol!
She sounds so out of breath
Maybe she's nervous
No big deal but it's making me anxious lol