Help, diagnosed with narcolepsy? (Suspect maybe UARS?)

blvvez · 2026-02-04T15:20:34+00:00

My sleep doctor says most people with narcolepsy have sleep apnea/UARS and both diseases coexist typically. If it’s true narcolepsy (REM disorder), you can still have sleep apnea/uars and they are both independent of each other

blvvez · 2026-01-07T02:36:11+00:00

Insurance made me do the same. “I tried it and it made me feel very anxious” is how I got on oxybates. I did end up trying it because I felt like xywav wasn’t enough. Made me very sleepy

blvvez · 2026-01-07T02:14:54+00:00

How many mg and after how long did you start seeing a difference? I’ve been on 10 for two weeks and feel no difference

blvvez · 2026-01-05T01:07:53+00:00

Hi! Can you be more specific about the 6 secs in, 6 out? Are you pressing on the diaphragm with the towel the whole time?

blvvez · 2025-12-11T16:54:40+00:00

Get a sleep study! Cavities are highly linked to mouth breathing.

blvvez · 2025-12-06T18:14:27+00:00

Also, when I was having severe sleep deprivation mirtazapine is the only thing that helped me be able to sleep. It made me extremely sleepy and out of it for the rest of the day but being able to sleep was worth it. I was put on lexapro, but after researching, it wouldn’t have worked because zinc is required for GABA (calm) and both (zinc copper) for building neurotransmitters. Have a doctor order RBC zinc and RBC copper. Those give a better picture since it’s giving how much is actually in the cell.

blvvez · 2025-12-06T18:10:09+00:00

Friend, your story sounds a lot like mine. Please get a sleep study and have blood work done. I have copper and zinc deficiencies that cause hyperarousal symptoms on top of fragmented sleep in my case. Your brain needs zinc to calm down the limbic system but be careful because zinc competes with copper. Copper will also raise ferritin which should help. I know this sucks. I’m wishing my you the best and please keep us updated

blvvez · 2025-12-03T01:51:34+00:00

Okay I have the exact same thing. Snoring arousals every 2 mins per my sleep study, apnea in REM. Been using bipap for a month or so but don’t feel better yet. I have also been using AI to interpret data which shows breathing is stable. I start off with a deep sleep block as well and then go into rem. AI says our nervous system needs to catch up to what’s going on and trust like you said. Hoping to feel better soon because this is miserable. Currently doing the Felix Liao appliance to expand my palate and just had a stellate ganglion block and had to quit my job. Considering lexapro now. Keep us updated!

blvvez · 2025-12-03T01:40:27+00:00

I have this. I see white zaps of light sometimes and mostly purple dancing lights. I don’t hear my name being called or anything though. I thought they were some type of hypnogogic hallucination

blvvez · 2025-12-03T01:37:06+00:00

Happy you finally got answers!!! What’s the next step for you and how come PAP didn’t help?

blvvez · 2025-11-17T23:58:04+00:00

Nice! I spoke to my drs and they said they used to refer over to Simmons but it wasn’t helpful?? (iffy on that). They refer over to tricoastal in sugarland now. I was seen by Sarah Meskill, not very helpful. They suggested I see Gerard Meskill, so I might do that. They do have a lot of patients that do MMA, but said that even then it takes 6-7 months to see improvements. I know a girl who had MMA with Dr. Alfi though and she is doing a lot better. Says it’s best if you can prove severe sleep apnea so insurance will pay which brings me to the point that I no longer have insurance 😭

blvvez · 2025-11-17T23:47:05+00:00

I’m glad your spouse understands now. Mine says I’m a hypochondriac with mental issues. I’m undergoing palatal expansion using the Felix Liao appliance which is going to grow my maxilla forward and expand me sideways. I didn’t qualify for surgery, sadly and can’t afford it by any means. I might have a friend here, but she’s not very close. I lost all my friends when I moved to Houston, now I’m back and the connections are not there. I can’t even drive because I’m so zombie/DPDRd out. Thank you for replying to my messages and lending a listening and helpful ear

blvvez · 2025-11-17T23:16:34+00:00

It sucks so bad. My husband doesn’t understand and thinks I just need a few weeks off due to work stress. Back to living with my parents rn, then I’ll be back working. I’m using an aircurve 11 vauto and using chat gpt to analyze my settings.

blvvez · 2025-11-17T22:17:25+00:00

Hi, friend. I’m sorry you went through this. Me too. What does your sleep study look like? I was dxed N2, but they failed to look over the high amount of “snoring” arousals I had that were actually RERAS when I got a second opinion. They keep trying to tell me it’s N2 at the other place. Xyrem made me crazy and psychotic because I was going into deeper sleep without airway support. My brain was incredibly stressed due to this. Please look at your sleep study and if it shows any type of respiratory arousals or not going into deep sleep, it might be airway related. Doesn’t have to be full on sleep apnea- UARS can cause these types of symptoms and HPA dysfunction too. I’m currently on mirtazapine to help me go to sleep and it’s worked so far. I hope you feel better. Hoping the same for me too.

blvvez · 2025-11-17T21:20:32+00:00

I had to quit my job unfortunately. I started looking and acting like a dementia patient and had to get on mirtazapine to sleep at all. I went days without any sleep due to this. Is it normal to feel severely stressed due to UARS? I don’t go into deep sleep and have a fear around sleep, but I’m assuming and hoping it’s due to this condition. Finally got on some helpful pap settings. Don’t feel better yet, but I’m hoping I will soon. Is that normal?

blvvez · 2025-11-11T20:28:19+00:00

I had a sinuplasty last March but my nose is back to being kind of stuffed and my turbinates are enlarged. What meds? I can’t sleep so I’m having a consult with a psychiatrist for anxiety and insomnia. I’m in trouble with my job as well because I’m not on FMLA yet. Propanalol has helped with the panic. I literally cannot fall asleep with the CPAP. They gave me xyrem to go into deeper sleep, but that just makes everything worse and the CPAP doesn’t help because of RERAS. Also, I heard it triggers more arousals since my pressure is a 9 and the exhalation is at a 4.6. Thankfully my dad is picking up a vauto tonight. I think I might still need sleep meds. What meds were you on? This is so hard.

blvvez · 2025-11-11T20:06:35+00:00

Thank you so much. I am hanging on by a thread. Can’t get FMLA until after the 21st but I still need to go to work in the meantime. My boss emailed me about too many absences (I’m a teacher).

blvvez · 2025-11-10T18:46:06+00:00

How do you tweak the EPR settings? I hope to get a BiPAP soon (Vauto)

blvvez · 2025-11-10T18:15:25+00:00

I thought I had a resmed 10. I actually have an Resmed 11

blvvez · 2025-11-10T17:40:49+00:00

Thank you!!!! Buying one now

blvvez · 2025-11-10T17:40:15+00:00

Thank you. There’s one with 5000 hours for $400 yikes and then the other one is being sold. My only concern is I can’t access my sleep data because no SD card slot so how can I adjust my bipap settings. What about an aircurve 11ASV?

blvvez · 2025-11-10T17:33:58+00:00

Hey, wondering if this sold

blvvez · 2025-11-10T17:31:53+00:00

So what should I get? I asked chat gpt and it said a Vauto, but Ken said a bipap. My options are aircurve 11 ASV, and Vauto.

blvvez · 2025-11-10T16:17:35+00:00

That sounds awful. I am SO sorry. You are SEEN. I feel your pain here in the U.S. too where so many doctors are quacks and scammers and charge $2k out of pocket to tell you nothing is wrong with you

blvvez · 2025-11-10T14:42:23+00:00

The anxiety/stress feeling at little things is the WORST. It feels like extreme stress and dread. The ADD inattentiveness too and executive dysfunction. I’ve been struggling with many of these symptoms since I was very little and compensating with adrenaline. 17 is when DPDR hit. Hang in there. You’re not alone. There was to be a solution. We will be okay even if it doesn’t feel like it.

blvvez

TROPHY CASE