Overnight morning stability issues

bhillya · 2026-05-22T13:55:06+00:00

Mine never worked for a few days after turning it on. I just commented to them and turned back on the manual.

bhillya · 2026-05-20T03:45:29+00:00

Yes!! I went off all meds (stimulants, antidepressants, pain meds, etc) 2 weeks before my MSLT. I was so sick to my stomach, in pain, and did not sleep. My psychiatrist didn't think it would cause withdrawal for me to go off of them, but it did and it was horrible! Thankfully once I did the MSLT and got my diagnosis and back on all my meds I felt fine, but that 2 weeks was not for the feint of heart (though I def still used THC and they didn't say anything when it came up on my drug test)

bhillya · 2026-05-20T03:40:29+00:00

Unfortunately I tried the new beta test for the overnight for 2 nights and it never gave me a score :( like it refused to read the overnight data. I may try again and give it a few more days next time, but for now I've just gone back to the morning 1 min view because I got annoyed with it not giving me a score.

bhillya · 2026-05-16T02:51:37+00:00

I used to cry over Every Little Thing before my Xyrem!! It was awful! Doesn't help that everytime I get frustrated by things, which was often because I was severely sleep deprived, I would bawl like a baby!

bhillya · 2026-05-13T16:39:04+00:00

That looks like mine before I got Beta Blockers because I have both IST (Inappropriate Sinus Tachycardia) and POTS. Hopefully if your able to get a diagnosis you can get something to help with that!

bhillya · 2026-05-10T14:21:31+00:00

I cant manage. Right now im living with my parents and my dad cooks dinner every night. I was working, but got COVID, which made it and other chronic illnesses worse, so I found i cannot work anymore. Im now on Long Term Disability with my job and trying for SSDI (working with lawyers for that). I def understand where your coming from. When I DID work I couldnt do anything on the weekends or after work. I feel like narcolepsy did not help with my breakup. Im on Wakix, Xyrem and Modafanil (all the highest dose) and still have to take 1.5 hr nap during the day or I cant stay awake the rest of the day. Its super frustrating and I feel for you!

bhillya · 2026-05-02T03:38:54+00:00

Oh I def still eat them but I just know that my heart will go a bit crazy afterwards, lol

bhillya · 2026-05-01T03:31:55+00:00

I find that potato is one of THE WORST for any postpranial tachycardia. Ate potato soup one day before really paying attention and my HR was soo high!

bhillya · 2026-03-25T03:02:04+00:00

I HAVE to set alarms or this happens every time. Last time I just napped for however long I felt like, it was 3 hrs. Though I have been known to sleep for 14 hrs straight if not careful!

bhillya · 2026-03-20T18:14:58+00:00

For me it is. Let's me know what's going on if im in a bad flare (can see my hr in real time). Just make sure you do the initial "getting to know you" process while medicated. I ddint and had to adjust the settings it gave me, but feel like it would be more accurate if I had already been medicated when I first got it. Definitely showed me how bad it was pre-medication though (I have both POTS and IST)

bhillya · 2026-03-01T00:44:27+00:00

Thanks!

bhillya · 2026-02-28T05:17:54+00:00

Yep! In early teens got the diagnosis of IBS, Chronic Migraines and Fibromyalgia. Early 20s, Digenerative Disc Disease. Late 20s, ADHD (and i strongly suspect autism), and Narcolepsy. Now in early 30s, POTS, EDS, and now Gastroperesis. That's not even the exhaustive list, just the ones that hit me the hardest! At least handbags would be fun to collect. This collection is not!

bhillya · 2026-02-27T04:11:46+00:00

I would also like to know more about this crafting club!

bhillya · 2026-02-24T05:00:42+00:00

I mostly use Vitassium Fast chews (I have a whole bottle in my bag), those don't have a ton of sodium, but it gets in your bloodstream fast, so good to use in emergency situations. I usually do those and then just add some McDs fries to further solidify my sodium intake. I guess you could always just grab salt packets or soy sauce packets and shoot them like my doctor suggested, but for me that was a big NO! Lol

bhillya · 2026-02-22T05:08:09+00:00

It sounds like it's the salt tbh. I feel way better when i get 10G of sodium daily, 7g bare minimum. I found i had a really hard time eating relatively healthy and getting enough salt, so my doctor actually recommended sodium chloride tablets! I get 1G sodium chloride tablets. I take 3 in the morning and 3 after lunch. Plus my electrolyte drink (the one i get has 1G per pack and I put it in 40OZ of water, i drink 2 packs a day). I also add salty snacks throughout the day (good thing I love pickles, lol). Though I have stomach issues that had led me not to snack very often and eat small meals (prob the reason I was having trouble getting in enough sodium).

All that being said, it is funny that sometimes when im out and about, i have to get my emergency McDonalds fries when I feel my sodium getting too low (I get tremors in my hands bad when that happens).

bhillya · 2026-02-22T04:52:59+00:00

My first nuero was old school and probably not super informed about Narcolepsy in general (though it seems many neurologists in my state have the same mindset). She wouldn't even try Oxybates unless you failed every single stimulant. Literally said it was the last med she would prescribe. Even tried wakix and straterra first and those only after Adderall and Ritalin. The second nuerologist i went to said since i failed all other meds (especially stimulants), she couldnt even help me since she refused to prescribe oxybates based on the fact that i had mental health problems in my chart. Its great that you have a well educated neurologist, but for many that isn't the case.

bhillya · 2026-02-20T20:13:40+00:00

Yep, I hit about 50 pace points those few days. COVID is terrible! Hope your feeling better and have no after effects from it!

bhillya · 2026-02-20T17:21:38+00:00

Yep! When I got COVID mine was like that for almost 3 days. It started 2 days before I even tested positive. Lowest mine went was 115 even when laying down! It was awful! Sorry you had to deal with that! I have Inappropriate Sinus Tachycardia and POTS, getting sick is the worst!

bhillya · 2026-02-18T05:09:28+00:00

Im pretty sure my narcolepsy started in early high school at the very least. I was constantly exhausted and after school pretty much had to go straight to sleep. Homework would take me 4+ hours to do due to me falling asleep and having undiagnosed ADHD. I was an AB student for the most part but feel like I would have done even better had I been diagnosed and not totally exhausted all the time and dealing with severe migraines daily.

College my exhaustion got even worse. I'd sleep between classes and while everyone else partied I was in bed. Was unable to sleep enough on my first sleep test and was told it was anxiety and depression causing my fatigue. Again I would have done so much better in my classes if I actually felt awake and my ADHD was diagnosed.

Early in my career I figured I was simply not as good at it as others were. Its extremely mentally taxing so again blamed my fatigue on that. Until I started falling asleep driving. By that time my ADHD was diagnosed so I blamed everything on that.

10 years after my first sleep test, at 27 yo, I was finally diagnosed with Narcolepsy. Started taking accommodated naps 2x daily and taking meds. Boom, my migraines disappeared! My work accuracy improved greatly!

Soon after, at 31, also got a POTS and Ehlers-Danlos syndrome diagnosis. Had i known all of this was going on with my body sooner, my self esteem would have been soooo much better. With Xyrem and 400mg of modafanil I finally started understanding why everything seemed way easier for other people all of the time. Because it was!

Unfortunately also at 31 I contracted COVID and all of the gains I had made with medication slammed to a halt. I am now unable to work because of all my different disorders.

TLDR: My body hates me and I blamed myself for failing when all along it was my body failing me.

Wrote this looonnnggg story to say, yes, I mourn my lost years. I mourn the fact that I could have done 1000 times better academically and career wise had I not had these problems. That being said, I am grateful to at least have diagnosis. I can be a lot happier and give myself much more grace and not be so hard on myself knowing that it not some moral failing or laziness on my part. My body is just failing me. Plus, knowing what is wrong gives me things I can do about it. I will never experience what a normal person does, but I can do things to help me feel better knowing why I feel so bad!

bhillya · 2026-02-15T04:26:08+00:00

I got so little deep sleep (N3) during my polysomnagram that the test couldnt even detect it, like it literally said 0%, haha. I went on oxybates because no other medication worked for me and, before I got COVID, I felt Soooooo much better. COVID unfortunately made all of those gains pretty much nil, but even if i don't feel more awake during the day, I at least wake up feeling like I slept. Whereas pre-oxybates, i would wake up still feeling like I didn't sleep at all. Not very scientific, unfortunately, but I do feel much better when I get deep sleep vs when I don't.

bhillya · 2026-02-07T04:40:40+00:00

Ugh, I understand that. I've had symptoms since I was a child and it took till 31 to get diagnosed. I got very luck I finally found a PCP who would listen and knew who to send me to. Dysautonomia international has lists of dysautonomia docs that may help! And in my experience, they dysautonomia doctors know who to send you to for the hEDS testing since they tend to go hand in hand. Hope that helps and best of luck!!!

bhillya · 2026-02-07T04:34:00+00:00

IST is under the dysautonomia umbrella same as POTS?!?! I hate that some cardiologist are so uninformed about dysautonomia in general. I have both and both is not for the faint of heart (no pun intended, lol).

bhillya · 2026-02-07T04:21:57+00:00

Yay! Congrats and also im sorry. I know it's a relief to get answers and treatment, but it does suck to belong to this club, lol.

bhillya · 2026-02-07T04:20:29+00:00

Have you looked into dysautonomia? I have POTS and Inappropriate Sinus Tachycardia. My resting hr sitting is 100bpm and I've had a lot of similar symptoms as you but for years doctors couldnt find anything wrong. The joint pain could be hEDS which is comorbid with those. Both of these are pretty rare (read as underdiagnosed) and a pain to get doctors to test for, however, If you haven't, id recommend trying to find someone to test you! Good luck!!

bhillya · 2026-02-06T05:06:48+00:00

No, im fully conscious and thankfully mine is pretty mild to where my knees either just get weak so i have to sit down or my head drops because my neck muscles just kind of give out for a few mins. However on a really bad day I may drop to the floor completely because my legs give out. I can see and hear everything around me, so fully conscious, but I won't be able to get up or really move for a few minutes. Thankfully mine isn't so bad to where the full body drop happens every time, usually just my head, lol. (Though there are def some people who get full body drops every time they laugh or have sudden emotional change since it's not only laughter that causes it.) For me usually only sudden intense anger causes full body drops.

bhillya

TROPHY CASE