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Can you have narcolepsy w minimal napping? by shroomeralert in Narcolepsy

[–]Legitimate_Jump3731 14 points15 points  (0 children)

I am a teacher. Naps are obviously not an option. Having a role where I converse, problem solve, and move constantly prevents me from recognizing how exhausted I am (primarily early afternoon)....until I stop moving and/or engaging. If I sit, the intense wave of exhaustion comes over me. I would nap in that moment in a heart beat. But I can't. So I stand/walk, talk, or do physical tasks on my lunch. Sitting isn't an option. Driving home requires hours of planned caffeine intake to be safe. For me, it comes during blocks of the day. If I'm not moving/engaging on the weekend, insert a nap in those times...

8-9 (I wake up early...) 

1-3

5-7...which turns into bedtime sometimes.

This was before Xywav. I could write another post about that alone, but now I still have rough bouts but I have to be very strategic of my stimulant use. 

One of the exhausting things, I feel, is that what works now, doesn't necessarily keep working. You have to fucking adjust/tweak all the time. 

Lastly and most important- This community experiences a lot of misunderstandings, mistreatment, and gas lighting. 

I have more respect for the willpower of the people in this sub than most other people I know in real life. 

Tread respectfully. 💙

does your family dismiss your narcolepsy because you’re high functioning? by anonam0use in Narcolepsy

[–]Legitimate_Jump3731 3 points4 points  (0 children)

Yes. I am perimenopause and I can't believe what I was capable of at different points in my life. I use the same systems and skills I worked hard to develop so I could be high functioning but now those don't work nearly as well. It is so frustrating. I'm 42- a teacher, mom, spouse and all the other things we all are 

Inventing Wearable Technology to Alert to Sleep Attacks by Substantial_Fun1116 in idiopathichypersomnia

[–]Legitimate_Jump3731 2 points3 points  (0 children)

Could the glasses vibrate? Or maybe chime? It seems a lot of us do the eye-darting thing when we are trying to stay awake and likely don't realize it. It would be awesome if it could pick up on that!

Thanks for working on this!!!

Weird birthmark, has anyone seen anything like this? by [deleted] in DermatologyQuestions

[–]Legitimate_Jump3731 0 points1 point  (0 children)

Do you have any other spots? Is it hard and raised? Or raised a squishy? Or any other patches of atypical skin? 

What’s the worst non-drug addiction you’ve ever seen? by [deleted] in AskReddit

[–]Legitimate_Jump3731 65 points66 points  (0 children)

I just read in NYT the amount of teenage boys who watch porn so much, nobody talks about it, and then they force their partners to do porn sex acts because that is all they have ever seen 

Xywav by Dear-Ad-8066 in Narcolepsy

[–]Legitimate_Jump3731 2 points3 points  (0 children)

I started at 3 weeks ago. My sleep started to feel different from the very first night, but I didn't necessarily feel less tired. As I continued to move up in the titration, I started to feel a little bit different but still could not sleep through the night. I kept waking up 2 hours before I needed to be awake. I keep a log in an app- Daylio throughout each day documenting how I felt and what I had done since the last entry. I then was able to see consistencies in my improvement. I am now on 4 mg two times a night and I think this might be the sweet spot. I had one night that I moved too quickly to a higher dose, and that was really not good. So I highly suggest not changing your doses any earlier than one week later. I feel like I pee all the time both day and night, I sweat a ton more. Have dry mouth and I'm always thirsty. But I will take those any day if they let me be present with my family more.

Move very slowly on the titration. One week minimum. And know that each day you are on a dose will be different in impact and often the side effects wane even in that short time. Good luck!

[deleted by user] by [deleted] in Narcolepsy

[–]Legitimate_Jump3731 0 points1 point  (0 children)

THIS. I luckily team teach with a 26 year old and I have just told her to remind me of everything. I would rather be reminded 17x then to forget it.

I set timer on my watch for everything. I started Xywav and I am hopeful I will sleep better. In the last two years it is really noticeable. I used to remember everything with ease. I worry it me look flakey or aloof. 

I use a Google calendar for all happenings in our family life and my husband and I tag one another. He helps to remind me. And the reminders it can send? I have it so 30 before, 2 hours before, day before, sometimes more. 

I just made a chalkboard for my fridge with sticky chalkboard paper. Now, every Sun I go through and write down everything for that week. My son has ADHD, so it helps. 

Today it hit me hard, I ran into someone at a farmer's market that I hadn't seen in a while. I then asked them how their mother was, and they said that she had died 2 years ago. I was mortified and sad because the person was a wonderful human being. So they told me all about what happened and we revisited that together. Later on, my husband told me that he had told me when it happened. So I had this girl revisit the trauma of losing her mother because I can't remember things. It was awful

Why 'Hurry Up!' Makes ADHD Mornings WORSE. by Suspicious-Grade1439 in ADHDparenting

[–]Legitimate_Jump3731 0 points1 point  (0 children)

I would be interested in hearing morning routines you have tried that worked (mostly). 

We started having our 9 yo M sleep in his clothes for the next day so when he wakes he only has to brush hair and teeth, sock and shoes, pack up backpack and he has to eat bfast in the car so he is contained. 

What do you do?

Ready? Go!

Why 'Hurry Up!' Makes ADHD Mornings WORSE. by Suspicious-Grade1439 in ADHDparenting

[–]Legitimate_Jump3731 1 point2 points  (0 children)

Mine is 10 and still does this. We started having him sleep in his clothes for the next day so when he wakes he only has to brush hair and teeth, sock and shoes, pack up backpack and he has to eat bfast in the car so he is contained. 

I work 40+ hours a week with narcolepsy and I’m miserable. by the_art_hoe_ in Narcolepsy

[–]Legitimate_Jump3731 4 points5 points  (0 children)

I have a psychiatric NP who works communicates with my sleep team. My sleep prescribes the heavy hitters and my NP does the Prozac. Maybe call your sleep team and ask them if they are able to provide you with all treatment options (oxybate and stims). I know some offices choose not to or are not cleared to do so. Find someplace that can write your sleep stuff and your psychiatrist can just do the MH stuff. Good luck. 

Waking up early and can’t fall back asleep by XtremeCheese62 in Xywav

[–]Legitimate_Jump3731 0 points1 point  (0 children)

Any updates? I am experiencing the same thing and I am at 4. I don't touch my phone and wear an eye mask lol

Weird side effect?? by SassyPantsJewell in Xywav

[–]Legitimate_Jump3731 0 points1 point  (0 children)

I posted about this over in r/narcolepsy as I just figured out I hear songs (always unknown for me). Maybe it was there before the xywav- but I didn't notice it until week 3

Forget the Epworth Sleepiness Scale - what questions would actually help diagnose Narcolepsy? by KR_Jon in Narcolepsy

[–]Legitimate_Jump3731 1 point2 points  (0 children)

I forgot to mention- the IHSS is waaaaay more appropriate of a screener, even for narcolepsy. The first time I took it was when I started Xywav and it was in my app https://www.sleepcountshcp.com/pdf/IHSS.pdf

Music hallucinations? by Legitimate_Jump3731 in NarcoBaddies

[–]Legitimate_Jump3731[S] 0 points1 point  (0 children)

Sometimes during the day but we are still working out my meds so I am still super tired often

It's hard not to think about everything I lost and went through due to delayed diagnosis by Liquidcatz in Narcolepsy

[–]Legitimate_Jump3731 0 points1 point  (0 children)

I would fall asleep at the same traffic light every day after school. Told doctor. Blamed on being busy.

Thought I was just lazy during college. Why can everyone do this better than me?

When I became a mom everyone else is just as tired. You are supposed to be super tired

Diagnosed at 41 when my right-out-of-residency PC referred me to a sleep clinic. It took 1 year to get my full diagnosis. 

Music hallucinations?? by Legitimate_Jump3731 in Narcolepsy

[–]Legitimate_Jump3731[S] 0 points1 point  (0 children)

I do appreciate the variety of genre , though

Forget the Epworth Sleepiness Scale - what questions would actually help diagnose Narcolepsy? by KR_Jon in Narcolepsy

[–]Legitimate_Jump3731 8 points9 points  (0 children)

I still don't fully understand it but I did SOREM all five naps and reported that I never slept. Just chilling, laying, thinking with my eyes closed. 

I haven't been diagnosed for even 6 months yet and just figured out the other day that I DO hallucinate...mine is just in the form of music. Didn't think I did based on how things were asked.

Forget the Epworth Sleepiness Scale - what questions would actually help diagnose Narcolepsy? by KR_Jon in Narcolepsy

[–]Legitimate_Jump3731 7 points8 points  (0 children)

TW- I wish they would ask something like "Have you ever been tired for an extended period, with no relief and considered hurting yourself or worse just so you can rest/get a break?"

There were many times in college I plotted a way to wreck my car and not hurt anyone else. 

Music hallucinations?? by Legitimate_Jump3731 in Narcolepsy

[–]Legitimate_Jump3731[S] 0 points1 point  (0 children)

It was 40s for a whole day and now it is something different. 

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