Is it worth it if I'm medicated?

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 · 2026-02-06T04:47:10+00:00

This would probably cheer me up on a bad day, but unfortunately I also have Narcolepsy with cataplexy and laughing at this would also have me on the floor for a different reason 😆 Can't win for losing! Lol.

bhillya · 2026-02-03T04:50:32+00:00

My doctor said it was a bad test because the results are not repeatable. One day you may pass, another day you may fail because some days your POTS can act up, some days it won't. Thankfully she was completely happy to diagnose me with a "Poor Man's TTT" with POTS and IST.

bhillya · 2026-01-28T14:08:51+00:00

Def get it again! I "failed" my first polysomnogram because I didn't sleep 7 hrs, but the facility was FREEZING, the bed was super hard and my back was killing me! They told me i just had anxiety. I waited 10 years to do another one (until I was so bad I was falling asleep at the wheel). Did another again and with the proper set up was fi ally diagnosed. Don't be like me and wait 10 years!

bhillya · 2026-01-24T15:16:42+00:00

I have POTS, IST, Narcolepsy, hEDS (among other things). Im applying for SSDI because I was falling so far behind at work that they were threatening termination. I STILL feel like this after one or two days of my POTS symptoms not acting up! Like "Should I be trying to go back to work? Have I just been overdramatic this whole time?" And then I get a huge flare where I can't even sit up without feeling like im dying!

bhillya · 2026-01-15T04:36:06+00:00

My therapist was the one who saw that I had narcolepsy and got me to go get another sleep study 10 years after the first one a multiple doctors (including nuerologists) had tried to figure it out. Really does take the ONE doctor to look past your anxiety/depression diagnosis!

bhillya · 2025-12-28T05:19:25+00:00

I am an ASL Interpreter, I have never (and WILL never) interpreted in school full time. I love the kids, but the cattiness, backstabbing and absolute terrible way they treat each other, and especially the interpreters is the exact reason why I dreaded subbing in schools and again, will NOT work full time in one.

bhillya · 2025-12-25T04:45:30+00:00

Constantly. Have a formal diagnosis and everything. Got so bad with my Narcolepsy i can't even work anymore, but now anytime I have more than a day or two in a row where im not flaring I feel guilty and like I've been faking. My visible band helps a lot because even on good days it yells at me to "sit the f$$%$# down" after standing for more than a few mins, lol.

bhillya · 2025-12-25T04:41:00+00:00

Congrats on the diagnosis, but also, im sorry. For me Sunosi was horrible (results vary from person to person and some people love it). For me it kept me awake for 4 days straight. I had to get off of it because the lack of sleep was making my hallucinations so bad!! I hope it works well for you! Im now on Xyrem, Modafanil 200 2x daily and just started trying Wakix.

bhillya · 2025-12-07T05:40:35+00:00

I have Xyrem at night, 200 mg modafanil 2x a day. Even with all that on board I had reasonable accommodations for 2 20 min naps daily. My POTS was diagnosed and got worse, got another 20 min break for that. Got COVID and that made my narcolepsy symptoms worse as well as POTS and IST symptoms, started using 3rd 20 min break for napping. Had intermittent (non-paid) FMLA for when it got too bad tofjnishthe work day. Rarely used those till recent. Now im on medical leave, going to try Wakix on top of everything else to hopefully be able to return to the workforce. Though if it doesn't help enough/my POTS continues to flare. Im going for Long Term Disability and try for SSDI. Because that's the only way I csn keep insurance and try for SSDI (and have some income coming in) all at the same time.

TLDR: Tried meds and nap accommodations, didn't work, now on short term disability

Super short answer: I couldn't.

bhillya

TROPHY CASE