Comment by exhypothesi

Comment by exhypothesi 8 days ago

* Modafinil (400mg, 1x daily) - Started with 100mg and tried several variations of timing/dosage. Currently, 400mg upon waking in the morning has worked the best.

* Duloxetine (30mg, 2x daily)

My PCP prescribed the Duloxetine early in the process when they suspected I had ME/CFS. It did not seem to do much other than make me feel calm in situations that would normally cause anxiety, but later I got the IH diagnosis and was also prescribed Modafinil. My PCP offered to help me stop the Duloxetine, but I decided to stay on it because: 1) I was so grateful for the relative energy I had after starting the Modafinil that I didn't want to do anything to compromise that, and 2) I was enjoying the anxiety-reducing effect.

The Modafinil has not completely relieved symptoms; I still have fairly bad sleep inertia and will crash with a "sleep attack" about once a week, but that is far better than before, when I was sleeping 11-18 hours _every day_.

Sorry--I'm sure that's not too helpful to you, as it seems Modafinil is doctors' standard starting point for IH "treatment" (at least in the US).

Edit: Oh, and despite the "warnings" in the Modafinil instructions, I also drink about 3 cups of coffee a day (stopping at noon), and I feel that has been a vital supplement.

What has your experience been?

nosefurhairdo 8 days ago

Not the person you responded to, but thought y'all may be interested: there is a promising new class of drugs for narcolepsy type 1, orexin agonists, that are yielding great results in clinical trials. TAK-861 is in stage 3 trials now I believe.

As I understand it, the best theory of NT1 is that an autoimmune response kills the orexin-producing neurons. Orexin is a neurotransmitter that plays a role in healthy sleep architecture as well as wakefulness. In theory, orexin agonists are a much more direct treatment of the underlying issue than current treatments.

So hopefully there will be some better treatments available for y'all in the next few years. May even be worth trying to find a trial for one in your area.

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RevEng 8 days ago

I was prescribed Modafinil, and while it did keep me from falling asleep, it didn't help with my wakefulness otherwise. When I had a serious crash, instead of sleeping through most of it, I would be awake through it all, with all the discomfort of the extreme fatigue and mental fog, but with no ability to fast forward time by sleeping through it. After a few months I decided it wasn't worth it.

I'm on methylphenidate right now, and while reports are that it makes CFS worse, I find it helps me to remain more aware and capable when I start getting quite sleepy, to the point where I can often wait it out rather than having to actually fall asleep. It doesn't seem to have changed the frequency of attacks nor did it prevent the really big ones, but I was able to at least work most days whereas before I was regularly too foggy to do much of anything.

The other medication my doctor suggested was Xyrem. While the research is promising for treating IH specifically, the effects and risks are worrying enough that I don't think it's worth it. It's also very expensive and it seems unlikely that my insurance would cover it, since it's off-label usage.

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Kathula 8 days ago

I'm not a regular poster here, so sorry if I don't follow the rules or etiquette correctly, but I gotta go to bat for Xyrem. I have Narcolepsy, so our situations aren't exactly identical, but it seems to me IH and Narcolepsy have a big overlap.
First of all, the benefit of taking Xyrem is so, so big. It doesn't compare to any other medication or stimulant. You can get quality sleep at night. No more insomnia, lying awake, or constant night terrors and waking up 30 times a night. You feel refreshed when you wake up, like a weight has been lifted from your shoulders. Like a veil has been revealed.
The risks aren't that great, if you take it as prescribed it shouldn't cause you any trouble, at least not anything major. Nausea usually only happens when you titrate up the doses too quickly. It happened to me, maybe 5 nights, or 10 at the most. Hasnt happened now in 10 years I've been on it.
You should look it up more. You can check in the narcolepsy reddit, there's always questions and discussions around Xyrem/sodium oxybate every day.
I do sympathize with the high cost and insurance problem. It certainly isn't a medication most people can afford on their own.

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- nick__m 7 days ago
  
  There are no reason, except greed, that explains why Xyrem is so expensive! It cost almost nothing to produce. It's an old simple molecule, GHB was know for it's restful sleep since at least the 90's and so was it's safety profile.
  In a fair world the patent would be voided and it would not cost more than 20 dollars a month.
  
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