RE: New to Therapy - Starting on BiLevel
Just thought I'd provide a bit of an update. I've changed the machine back to CPAP mode with a pressure of 4 and plan on keeping it that way for the time being. I noticed that even with the very mild settings I changed it to I was having an extremely rough time day-to-day on top of my pre-existing problems with no appreciable improvement shown in OSCAR. My AHI has consistently been at or around 1 on CPAP mode with a pressure of 4. I've got an appointment in a couple weeks to go over the data and hopefully discuss alternative treatments. I'm expecting an idiopathic hypersomnia diagnosis based on the MSLT I had done and my understanding of the symptoms. I plan to keep using the machine on its current settings until the appointment on the off chance that it ends up proving beneficial.
RE: New to Therapy - Starting on BiLevel
Let us know how the appointment goes, if you have a chance. Good luck with it!
RE: New to Therapy - Starting on BiLevel
I just realized I forgot to update this. For those interested, I have been diagnosed with idiopathic hypersomnia and have started treatment for that. It was deemed that PAP therapy wasn't healping and that the AHI from my sleep study back in August wouldn't explain the severity of my symptoms. If anyone has questions I will do my best to answer them.
RE: New to Therapy - Starting on BiLevel
Zeliox, it’s good to hear you’ve received a diagnosis and are being treated. In case other sufferers review this thread, would you mind describing the treatment? And is it helping yet!
RE: New to Therapy - Starting on BiLevel
Unfortunately there aren't really any cures for idiopathic hypersomnia or real treatments for the central problem since it's not well understood. The core of the problem is that these individuals tend to get enough sleep and commonly more than needed but are basically incapable of ever feeling rested. This leads to chronic symptoms of sleep deprivation both mentally and physically regardless of sleep amount or perceived sleep quality. Given this, treatment generally consists of taking stimulant or stimulant-like medications to help the individual feel more awake and alert. This is stuff like Adderall, Ritalin, Provigil, etc. There is also a line of treatment that focuses on improving sleep through oxybates. These medications would be Xyrem or Xywav currently. These induce deep sleep or short-wave sleep to be more specific. Oxybates mostly help people who experience very fragmented sleep which tends to be common for people with idiopathic hypersomnia and related conditions.
There are non-medical treatments as well. Exercise is very important although very difficult for people with idiopathic hypersomnia. Many people find that particular diet changes helps as well. Basically anything that may help an otherwise healthy person experience a boost in energy can help someone with idiopathic hypersomnia, there's just obviously a much much larger hill to climb and we're just looking at getting to a place that approaches "normal".
I'm currently still playing medication roulette to find which treatment will work for me. I've found some limited success with Ritalin, although it still doesn't seem like the right fit. I'm someone who experiences a great deal of night-time arousals and am hopeful that oxybates may help should I get the opportunity to try them.
RE: New to Therapy - Starting on BiLevel
Zeliox, it’s generous of you to share this information, and the odds are good that it will offer help an encouragement to other who suspect that have idiopathic hypersomnia. Plus, others reading this thread can direct people to it.
My very best wishes for finding a combination of treatments that will work right for you.
RE: New to Therapy - Starting on BiLevel
Zeliox, when I found the Hypersomnia Foundation description of IH/NT2 I immediately thought that my dad's picture should be there next to it. (It would be a picture of him asleep on the couch/chair/etc. at some family function.)
I've been trying to convince my parents that they should do something about this for years. They don't think that there's anything odd about it!
My brother and I, and two of my brother's kids, probably have a pretty mild form of it, too. We just call it the family sleep gene.
My dad now has Parkinson's, and I wonder if it's related, too.
I've read recently that there is some new treatment for IH, but it sounds like it's not exactly a home run...
