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Everything posted by DeathRabbit

  1. We're currently discussing options here
  2. I used simple machines to run my old forum and it was super easy to install. I'll shoot you a pm later
  3. That's how I feel about Twitter. I'm ok with FB tho. But a lot of ppl won't join a narcolepsy group on fb tho, cuz they don't want to risk outing themselves to co-workers et al. I created a secret group one time that was invite only with a hidden roster and still very few takers. I wish I had more spare time. I'd buy some webhosting and build a new forum and backup some of the NN forums greatest hits on there. But I know I don't have time to manage it by myself, so it'd end up withering like this forum. I miss the free time I had a student for stuff like that.
  4. Shall we all move to reddit then?
  5. Lol first I heard of it. Whelp, RIP in peace forums. In all honesty, I'm not shocked if true. Web hosting is expensive and they've showed zero-interest in this forum for over half a decade now. There's some good stuff archived on here, but yeah from a business perspective, I really don't know why they've kept it up as long as they have.
  6. Xyrem is mainly to treat cataplexy. Some people report it helps their EDS, but not everyone. I think it's quite likely you are still going to need something to get you through the day. As far as the waking up thing, yeah when I tried it, I had that issue too. It seems it wearing off would almost always cause a wake up for me. There's a longer acting Xyrem in the works. Here's hoping it is what they think it is.
  7. Good treatment was elusive for me. I've found some meds that help some, but I mainly think my my body is adjusting to having N after all these years, so I've gotten a bit better. I believe my exercise regimen has helped as well. Others have had more luck in finding successful Rx treatments than I; I'm type 2 N which the general consensus seems to be it's harder to treat successfully. One thing you will have to realize if it is N, is that you will never be like other people. Nothing exists that can fix the orexin system deficiency in any meaningful way. All treatments are geared towards symptom management. I'm not saying that to try to discourage you. It's just that expectations need to be managed going forward, or you'll set yourself up for a major depression later down the line. I just focus on trying to make each week a little better than the last one.
  8. You can even take the nicotine liquid for vaping and use it sublingually, though you need to be careful with dosage measuring, because the rapid absorption of nicotine makes it easy to OD. I've read about having medical emergencies from just spilling a nicotine concentrate on their hands not having the foresight to wash them immediately.
  9. There have been a lot of people that have gotten an N diagnosis and suddenly, a lot of their past life experiences/medical history just clicked and made sense. It's most likely underdiagnosed, especially in youth/children that can't really be their own advocate and have no baseline for how they should be feeling. Ppl like me who acquire N in adulthood and can at least see the state change, but someone who has been that way for as long as they can remember really has no way to know what they are feeling is different than normal.
  10. I slept with a light on until midway thru college when my cheapo roommates wanted the light off to save money.
  11. Dunno about the legalese but sorry to hear
  12. My friend takes it. I think he takes like a 25mg dose tho. He hates it because he is completely dependent upon it now and can only sleep about 4 hrs without it
  13. The zyrtec I think can decrease REM, being a histamine antagonist, but a cursory look doesn't seem to show it to be as big a deal as it is with the the SSRIs, benzos, and the like.
  14. Kinda weird you have no SOREMs, but if you have cataplexy, unless you have a TBI in your past, the chance the you don't have narcolepsy is statistically insignificant. Probability of something being fudged in the MSLT is much higher. N w/o C is relatively common, accounting for as much as a third of N cases. C w/o N is pretty much fake news tho
  15. Well generics are only required to be within 15% of what they say they are. And you can guess which direction they tend to error in, so your 200 mg modafinil is prolly 170mg and 30 mg of sawdust
  16. Urm...that sounds like a pretty inadvisable combo to me. Quite frankly, I'm surprised that a physician would even Rx oxycontin and fentanyl at the same time. Not to mention the klonopin. I take xanax, and my pshrink about had a cow when they gave me norco for back pain. But yeah, those two and opiods the xyrem are pretty strong respiratory depressants. What do they have you on the opioids for, if you don't mind my asking?
  17. That thing with your lips sounds like Stevens Johnson Syndrome which can be fatal. I would tell your doctor about that ASAP and I cannot stress that enough.
  18. Well regardless of whether it is N precipitated by Lyme, it's probably still worth following up with the sleep doctor as well. If lyme damaged your orexin system in the hypothalamus, that damage is done and clearing the bacteria if they are still present will not undo that unfortunately.
  19. What's their reasoning behind making the test so stringent? I assume there had to be line of thought here and the CDC weren't just trying to be obstructionist.
  21. It's a sign of nerve damage to the PNS. Was first observed in diabetics when their optic neuritis would worsen on hot days. Something about the heat reduces the conductivity of the neurons, and for ppl with a damaged myelin sheath, this means their neurological symptoms will worsen.
  22. I've known some ppl IRL that took Lunesta and said it was terribad, even caused adult bed wetting and other embarrassing stuff.
  23. I feel like the main benefit is relaxation. It has actual GABA in it as well, but I feel like that's most likely useless, as most of it is probably destroyed in the gut. It also helps with anxiety too. I've been able to back off my Xanax with this stuff.
  24. I know someone who has chronic complications from Lyme that was diagnosed very late. Lots of neuropathy and some memory issues that never cleared up, even though they cleared bacteria from her system.Maybe not the same thing as chronic lyme per se, but definitely proves that it can cause you issues down the road. Out of curiosity, do you have trouble with heat?
  25. There's phenibut, but supposedly it builds tolerance and dependence like crazy. I've seen some insomnia sufferers saying it was not even close to worth it to use phenibut. Hank really swears by trazodone for improving his night time sleep. I've been using a supplement with ashwagandha and l-theanine in it to promote GABA synthesis, and it seems to help me sleep well, tho there is some initial inertia when I wake up in the morning.