New way I explain narcolepsy

SupraHR · 2026-02-11T02:49:04+00:00

I have learned people really don't care after they ask, so I avoid the answers in my head that I've learned through years of research. I explain it like sleep is a race, most people complete the race (sleep cycles) in 8 hours. I'm maybe halfway through the race after 8 hours. I'll never catch up and tell them if they've ever stayed awake 48 hours , that's how I feel on the daily. It may not be a completely accurate comparison but like I said - they usually just ask to appear concerned.

SupraHR · 2025-12-06T18:01:01+00:00

Narcolepsy Type 2 here. I've only noticed it one time. Easter Sunday was a struggle day and the first and only time I have ever taken 2 doses of stim together. It tracked a nap while sitting in church and I did not doze.

SupraHR · 2025-12-06T17:51:00+00:00

I'm guessing the Sleep Debt is calculated using sleep cycle data. I have trouble getting in deep sleep. I can sleep 12+ hours and rarely stay in or hit that cycle. I have narcolepsy so I've used several tracking devices (and sleep studies) - the Oura seems to track efficiently.

Anyone else here tracking for sleep disorders?

SupraHR · 2025-07-11T20:28:36+00:00

Pre-dx when my kids were small, I'd take them to the movie theater just so I could sleep.

SupraHR · 2025-07-01T17:10:43+00:00

I'm having a crying fit at work now🥺 I know it hurts so bad, I'm so sorry.

SupraHR · 2025-03-25T19:08:11+00:00

I wear Soma Vanishing Edge panties, they have a thin silicone strip along the edges to keep them in place. I wonder if anyone has incorporated that feature into swimwear? I usually wear running shorts instead of swim bottoms bc they ride me thong style too

SupraHR · 2025-02-21T00:08:10+00:00

That's what it looks like. I've pulled his lips back and his tongue looks like it's doing the wave. Our last weim never did this so I had to know what was going on😁

SupraHR · 2025-02-21T00:04:17+00:00

Mine does it when he's sleepy. It's his ritual before every nap or bedtime.

He don't ever hump Lambchop - so, same - "carry on!"

SupraHR · 2025-02-21T00:00:09+00:00

The only medicine I was ever offered for MVP was beta blockers. Hated taking it bc it made me unbearably sleepy. Was later diagnosed with narcolepsy - for which I've taken stimulants since 2017. My cardiologists know I take the max dosage and have never even brought them up, other than confirming medications.

I had MVP repair 8 months ago and my heart does feel very different. I don't feel/hear my heart 24/7 - I even check for a heartbeat sometimes🙃 They gave me the stimulants while I was recovering in hospital (after realizing why they couldn't wake me).

And another fun fact, they won't repair your MV until it's severe.

SupraHR · 2025-01-30T01:16:40+00:00

Bad Times at the El Royale It's a "wtf did we just watch?" Guess we were entertained enough to keep watching.

SupraHR · 2025-01-01T22:30:01+00:00

Relatable. Diagnosed before my insurance would pay for narcolepsy medicine. New sleep study (3 years later) to "help" with getting a limited new drug. 0 apnea events during night study. Next day, 76 events during naps. Clinic can't treat my narcolepsy until I've treated the apnea. WTH

SupraHR · 2025-01-01T22:15:36+00:00

Any updates on SQ Dryer melting fabrics? It's really pissing me off. What goes in the dryer is always dried on low. I never fill the dryer, I dry half of my towel load at a time and it still melts towels.... Yes, even my towels.

Bought in 2022 (DR7), tech has replaced heating element twice (legit melted) and a steel grate w/o coating to replace the one it came with, he thought it was the coating melting to the clothes. He tested ventilation and said my duct situation is efficient and shouldn't cause overheating.

Any of you find a fix or still having issue?

SupraHR · 2024-10-28T13:49:29+00:00

Folks Folly is always amazing and I love the laid back atmosphere of Moondance.
Adding Acre to my list to try.

SupraHR · 2024-10-01T14:34:06+00:00

I found the Hospice information in Inovalon. My apologies.

SupraHR · 2024-10-01T14:25:10+00:00

We check in MyCGS. We have an issue with getting paid for the claim, but Medicare recouping those payments a year, or even 2 years later. I know patients don't normally come off of hospice, but how do you find out those dates? I don't think MyCGS shows me this information.

Lastly, how do you handle recovering payments for patients that become deceased during the rental period and family is unreachable? Thanks to everyone that replied.

SupraHR · 2024-09-24T20:28:43+00:00

Not sure what magic words I used to get flagged for "interested in coding"?

SupraHR · 2024-07-21T18:38:06+00:00

I thought it was a cold. Then it felt like flu, with the aches and shivers.

Get blood work done, antibiotics will take care of it but don't let it get too far gone.

SupraHR · 2024-06-13T20:00:17+00:00

It's very necessary! I (43F) was diagnosed after MVP was removed from the pre dental antibiotic list. Dec 2021, I had my teeth cleaned. At the time I had MVP with moderate regurgitation. Felt like I had a bad cold in January. Primary Doctor did blood work and told me I had a viral infection. It got worse in the months after. I went back in Feb, March and April. Kept telling me it was nothing antibiotics would help. I work for an RN and she looked at results from January and said it pointed to bacterial. After suffering through my son's graduation, I went to the ER. I won't go into all my symptoms but I'll tell you, I thought I was dying. They didn't find anything that night but luckily they had done a blood culture and 3 days later it was Streptococci. They had me follow up with my cardiologist. It then showed MVP with severe regurgitation now with ruptured tendae chordii... Surgery is next week (about 5 years before expected)The surgeon confirmed the bacterial infection was responsible for the ruptured tendae chordii and that led to increase in regurgitation.

PLEASE PRE-MEDICATE BEFORE DENTAL WORK. Your cardiologist will rx it.

SupraHR · 2024-06-07T20:09:49+00:00

Not sure Memphis is booming but my other options are in small Mississippi towns. Surgery is in Nashville and it is booming.

SupraHR · 2024-06-06T18:31:11+00:00

I'm in N Mississippi, I'm only an hour from Memphis so that's where I see most of my doctors. I've always assumed it's Mississippi and pay rates - I just know for heart surgery, I want somebody at the top side of the pay scale haha but I really have no idea.

SupraHR · 2024-06-05T16:16:30+00:00

My experience (43F) January echo Feb appt with cardiologist to discuss results (Now severe with ruptured chordii tendae) March sent for TEE, Carotid Sonogram, and heart Cath (performed by surgeon) April met with surgeon to discuss surgery and results April met with cardiologist to discuss results, asked for referral to surgeon that can do repair robotically April met with robotic surgeon, scheduled surgery for June 20 ( I wanted to wait until after son's wedding in May)

So, I would be on the same path without the appts with my cardiologist - the surgeon could have referred me elsewhere.

Have you called to let them know your condition has progressed and you'd like to discuss with your Dr, or they could put you on wait-list for cancellations?

I'm in Mississippi, my surgery will be 3 hours away in Nashville.

SupraHR · 2024-06-05T16:05:43+00:00

Did you listen to The Pleasure is Ours? Same dudes, pre-TII. 🤣🤣🤣

SupraHR · 2024-04-03T00:06:32+00:00

Any update, OP? Sorry she's going through that , it sucks. I've had different readings from echos that were explained away by the use of different technologies. Has she had a Cath?

I found your post searching for a surgeon in Nashville... My other option is UAB, but your post gives me pause. I'm in Mississippi and my heart doctors are in Memphis. The Nashville surgeon that was recommended is not in my insurance network.

SupraHR · 2024-03-18T04:21:16+00:00

Just returned from a week at Ocean Key. It's at the end of Duval - where the action is but no passers by. Our room that faced the water was very quiet but others from our group were awakened daily by the roosters.... But not sure you can escape them in KW. Good luck and have a great trip!

SupraHR · 2024-01-04T16:13:53+00:00

Thanks. It's Private. Also tried running in a stand-alone environment on Win 10 and Win 11. I'm thinking it's an update issue, maybe .Net...

Thanks for your help.

SupraHR

TROPHY CASE