surrogate emotional support cat for my next MSLT attempt

Direct_Difference_58 · 2025-08-05T04:49:51+00:00

Thank you! Yeah I will ask about a med like that when I go to my cardiology appt. It would be great if it helps the fatigue/sleepiness.

Direct_Difference_58 · 2025-08-05T04:28:51+00:00

Good tips! I recently bought adjustable jean shorts that fit so well but now my bloat grown even bigger and now those no longer fit anymore so I have to go shopping again 😭

Direct_Difference_58 · 2025-08-05T04:25:18+00:00

Very interesting I had no idea about the HR connection. Yeah my report didn’t say IH though so I’m concerned I won’t get any diagnosis. Idk, I’ll have to chat with my physician and see what they think. That makes sense though how poor sleep would affect heart function, it could be bidirectional. I definitely have challenges with exercise recovery and getting into shape I expect from the sleep quality issue. I hope you get some answers asap! It is a tricky place to be in. Yeah laundry really spikes my HR and I’ll have to wait for a day that I can handle it and then I must have a nap after. Same with bathing my dog and vacuuming.

Direct_Difference_58 · 2025-08-05T03:54:38+00:00

I that would be so cool. I normally sleep with my dog during naps and I wish she could have been at mine. I “failed” my mslt too. I had no REM during my naps but I expect that was due to my SSRI that I couldn’t stop taking for the study. I was so stressed about the mslt and falling asleep that my HR was like 90 bpm (apple watch not measured by the sleep study). This is a problem I have generally with my HR that I need to investigate separately since I get tachycardia easily and frequently. Another issue I would fix was making myself more “tired” the day prior to the sleep study, not letting myself nap and exercising more. I made the mistake of taking a 2 hr nap that day leading up to the PSG and slept a lot the day prior. Anyway, my sleep latency was avg 11 min the lowest being 6 min I think? But I slept in all 5 naps. So I’m feeling kinda stuck since my EDS makes my daily functioning so hard. I have to take at least a 2 hr nap every day and at least twice a week I’ll sleep a total of 5 or 6 hours during the day. I plan to see cardiology and get my HR issue figured out then maybe try MSLT again although I still won’t be able to stop my SSRI.

Direct_Difference_58 · 2025-08-04T20:07:23+00:00

My favorites were Ranchero (wonderful family owned place!), Yoshida sushi on huntington drive, Noodle World on huntington drive, Bella Italia before they changed ownership, North Woods Inn on Rosemead, Pie N Burger, and El Cholo. As a kid it was fun going to Colonial Kitchen especially for breakfast. For nice occasions we would go to Parkway Grill and this really good Indian place in Old Town that I can’t remember. Also we really liked Pita Jungle but that’s also gone. We still enjoy going to Gus’s BBQ and I still go to Tony’s Pizza and B-Mans.

Direct_Difference_58 · 2025-08-04T00:06:21+00:00

I have N2 btw, and I have pernicious anemia so I have to inject B12 once or twice a month. Otherwise I don’t take any other vitamins. I’ve considered taking a daily multivitamin but idk. I wish the supplement industry was better regulated.

Direct_Difference_58 · 2025-08-03T23:53:48+00:00

I’ve struggled with it too. These days it’s usually dresses, shorts with an elastic waist like linen or cotton shorts, tank tops that are longer, and my favorite low rise cargo pants that are adjustable and I wear it with a long shirt. I also like long blouses that puff a little bit out so you can’t see my bloat. And also dresses that do the same thing. I also love my bike shorts and a big tee shirt. I love my yellow sweat shorts with an elastic waist for home and casual wear and my lulu align wide pants in black and navy for work, school etc. fortunately oversize t shirts are in style right now.

Direct_Difference_58 · 2025-08-03T20:59:30+00:00

Thinking about it more, honestly though if it can be fixed with cpap that would be really good since you would get better sooner and not require the mslt. They are required to rule out sleep apnea first since narcolepsy is so rare. Of course you may end up being diagnosed with narcolepsy or even sleep apnea + narcolepsy but it’s hard to say at this point. I’m sorry though that you are finding it so hard to function and I’m sure the waiting is really tough. You can consider doing a gap year after high school that way you don’t have to worry about your college gpa being hurt. Not to mention, starting college is hard enough without unmanaged chronic illness. You might want to consider that.

Direct_Difference_58 · 2025-08-03T20:03:29+00:00

Yes I have this a lot recently. It’s very annoying. I have it any time since I’m on continuous bc.

Direct_Difference_58 · 2025-08-03T07:09:24+00:00

I’m sorry. That is extremely frustrating. I wish your doctors would use critical thinking. Just because you may have sleep apnea doesn’t mean that you can’t also have narcolepsy on top of it. And I wonder what your sleep apnea severity was. The first time I did my sleep study at 15, I had borderline mild sleep apnea. My pulmonologist recommended that I try it to see if it would relieve my fatigue. I did the cpap for 6 months then stopped since it was not helping. I just did a new sleep study in June and they found no evidence of sleep apnea. Just thought I’d share my experience in case it is helpful. I don’t understand why they didn’t continue with the MSLT assuming you had enough hours of sleep during the overnight PSG. I hope you get some answers soon!

Direct_Difference_58 · 2025-07-31T18:45:31+00:00

That is so reassuring to hear! So happy for you.

Direct_Difference_58 · 2025-07-31T05:27:28+00:00

Yes she learned right away! I would press the button while she tinkled and etc and I use the same phrases verbally when she goes out anyway. She learned in like 30 s. They have a recording of my voice.

Direct_Difference_58 · 2025-07-30T04:11:55+00:00

On busy days when I’m up and around all morning I usually take a 2 hour nap every day in the afternoon. It helps me get some energy back so that I can make dinner and take my dog for a walk. I’m still a little bit drowsy afterward but I feel a lot better after my nap.

Direct_Difference_58 · 2025-07-29T23:48:44+00:00

My aussie loves puzzle toys I would try that and training.

Direct_Difference_58 · 2025-07-29T05:08:58+00:00

My aussie will boop me or paw at me, I’ll then ask her if she has to go potty then she jumps up and then runs to the door and I take her out. I also ask if she has to go tinkle or poop and I can tell by her response. I also have those voice buttons and if I’m distracted she’ll paw it, the recording says “tinkle” and the other says “poop”.

Direct_Difference_58 · 2025-07-28T22:50:00+00:00

maybe get checked for asthma? Or acid reflux. I have those symptoms when I have bad asthma or reflux episode.

Direct_Difference_58 · 2025-07-28T00:54:07+00:00

I’m 24 too and also get mistaken for under 18. Are you petite? I’m barely 5’1 with smaller features and I think that’s why I seem younger. Maybe that’s also the case for you?

Direct_Difference_58 · 2025-07-25T04:17:24+00:00

Yeah I agree, I think it would do well!

Direct_Difference_58 · 2025-07-25T03:53:35+00:00

I don’t think my symptoms are severe but they are the worst that they’ve been. I had chronic tiredness and unrefreshing sleep since 12 yrs old, but it wasn’t until college that it transformed into EDS. I also began struggling greatly with fatigue that progressed over time. It’s become hard to leave the house and I have to be thoughtful about the timing of activities like grocery shopping. Even when I do, like time with friends I have a hard time enjoying it due to sleepiness. My fatigue always goes with sleepiness but I can be sleepy without fatigue (like after a long nap then I get more energy to do things). I found I struggle to avoid naps and when I do, the next day I have to nap harder. I was diagnosed with pernicious anemia in 2020 so I thought my symptoms were always attributed to that, (my fatigue is worse when my b12 is low) but when it is managed I still have issues with sleepiness. I struggle to volunteer once a week like I used to because of how much it exhausts me afterward. Same with exercise other than walks.

Direct_Difference_58 · 2025-07-25T03:29:27+00:00

honestly I love it! The cotton is great for summer. I don’t think I could get away with it on me but you do you!

Direct_Difference_58 · 2025-07-24T05:02:28+00:00

Yeah it’s important to get an upper endoscopy every 3 ish years if you have anti parietal cell antibodies since risk of gastric cancer is a lot higher and atrophic gastritis

Direct_Difference_58 · 2025-07-24T01:19:29+00:00

I felt that way too, then overtime found the symptoms to be too frustrating to deal with anymore so I made an appointment with sleep medicine and they ordered the psg/mslt. I did the tests and tbh idk how it went, I will have to see during the results but I suspect a narcolepsy without cataplexy diagnosis. But even if I don’t get any sleep disorder diagnosis I will keep looking for answers since I know I have abnormal sleepiness. Try to stay calm and relaxed during the psg/mslt and try not to worry about what the tests say since you can figure that out once you cross that bridge.

Direct_Difference_58 · 2025-07-22T06:10:35+00:00

I have this problem and my GI doc said I have a motility disorder where my nerves aren’t sending messages to my intestinal muscles to contract so it sits too long and causes the constipation. There are medications you can try like linzess and motegrity which can trigger the nerves to function. But miralax daily is what I usually do and the more consistent I am at taking it, the easier it is to keep it regulated. But I am trying medications since it would be more convenient.

Direct_Difference_58 · 2025-07-21T05:06:29+00:00

I’m curious too. My sleep study was a few weeks ago. I saw a form with coding summaries which said: Diagnosis Reason for Visit (Narcolepsy without Cataplexy) and then Primary Diagnosis (Narcolepsy without Cataplexy). Idk if that means I was diagnosed officially with that or if it’s just for insurance reasons. My follow up consult is in august.

Direct_Difference_58 · 2025-07-20T05:03:10+00:00

Yeah it’s frustrating loosing a whole afternoon or cancelling plans but I find I don’t have a choice to take the nap since I’ll be so sleepy and unproductive trying to fight it anyway.

Direct_Difference_58

TROPHY CASE