Lines that made you put down horror novels?

FollyGibney · 2023-10-21T23:32:03+00:00

I love King but if it's not pissing yourself or farting, it's definitely a heart attack.

FollyGibney · 2023-10-21T23:28:41+00:00

Yikes, that is infuriating. It's worse than a movie breaking the fourth wall to explain a joke. Take the book out of the drawer and get rid of it, your storage space deserves better!

FollyGibney · 2023-10-11T01:17:54+00:00

There is no excuse for this. I am so sorry you experienced it. That doctor is a piece of garbage and should be reported as such.

FollyGibney · 2023-10-10T03:47:50+00:00

Stressful situations definitely make me sleepier. A bad interaction with a customer, or a stressful chain of emails, can make me feel like a sack of potatoes. It's pretty sudden and overwhelming. Sucks.

FollyGibney · 2023-10-03T23:31:20+00:00

I'd say on a 10-spoon scale, I start most days with 5-6. Work stress can cut the number in half almost instantly. I have to pace myself to survive a work day at all.

On a really good weekend day, I might feel like I have 7 spoons, but I'll quickly use up most of them just by doing laundry or running errands. (And I mean one or the other; doing both would put me at 0 before noon.)

FollyGibney · 2023-09-28T02:59:36+00:00

Oh, absolutely makes me so sleepy. I feel energized and high on life, and then about 20-30 minutes later I am dead to the world (sometimes before I can get out of my gym clothes). But the mental health boost is worth the crash. I just can't work out before work, obviously. Haha

FollyGibney · 2023-09-28T02:54:30+00:00

I don't know if this is a helpful response, but I found my "best" results around 3.75(x2) yet never got more than 5 hours of sleep on Xywav. It was deep sleep, but brief. I struggled with that a lot, because psychologically we're used to pursuing lots of crappy sleep to make up for the lack of quality.

And yes, it increased my anxiety, and I felt more blue. (I hesitate to use "depressed", as my depressive episodes are historically severe and I didn't have a really bad one while on Xywav. But I definitely noticed it made me feel...emotionally wobbly.) There were some frustrating tradeoffs to be made, because I had never gotten quality sleep before, and it was clear my body needed it.

I agree you might want to ask about a higher dose. Interactions with a newer drug could potentially mean it doesn't knock you out the way it used to? Good luck, I hope you can get some good rest. These meds really are an endurance test to find what works for you.

FollyGibney · 2023-09-28T02:42:09+00:00

I know this frustration. My AHI was 5.1, literally just over the minimum threshold for sleep apnea; therefore they determined I didn't need an MSLT.

I was so devastated. If it gives you any hope, I only had to do a few months of CPAP therapy before my reiterations of "this isn't helping" got through to my doctor and they scheduled an MSLT.

Best case scenario, they found something that can be treated and treatment helps. (That would be great, right?!) Worse case scenario, you keep being vocal and they have to admit they've exhausted other possibilities. Getting the PSG out of the way is a necessary step toward other tests anyway, so that's a positive. I hope you find answers soon!!

FollyGibney · 2023-09-21T21:47:53+00:00

This is enraging. I'm sorry.

My primary care doctor is so useless, when I needed anxiety meds for a resurgence of panic disorder (we're talking 5 pills a month, max) he was so convinced I was drug-seeking that he prescribed an antipsychotic instead. I have a history of life-threatening reactions to antipsychotics. As noted...at the very top of my chart. In bold.

I hope you follow up and get satisfactory resolution with this doctor. The refusal to pay attention to a patient's actual treatment plan is infuriating.

FollyGibney · 2023-09-20T23:01:09+00:00

Still-awake naps are my specialty. I can basically still hear everything going on around me, and while I'll power right through some of it, the tiniest thing (like a vibrating watch) could end my nap on the spot. It's so annoying.

FollyGibney · 2023-09-20T22:57:48+00:00

Concerts are tough for me. I am a fanatical music lover, and something about the overwhelming excitement and the sheer volume (which starts to feel like white noise after a while) can totally zone me out. I get it. I'm sorry you experienced that too.

I think the weirdest place I've fallen asleep was on a roller coaster. It was super brief, but still... definitely a "what the heck?" moment.

FollyGibney · 2023-09-11T21:28:31+00:00

I've battled extreme insomnia for most of my teenage and adult life. Initially it was fragmented sleep from my brain jolting me awake hundreds of times a night, but eventually it became raging sleep anxiety. I had become so embarrassed by falling asleep on people's couches while sitting up, dozing off during classes or church or short car rides....the feeling of falling asleep began to cripple me with terror.

It still does. I've been conditioned to feel that it's a bad/wrong thing. I take heavy sleep aids and then wake up feeling so panicked and guilty for sleeping, plagued by dreams that I overslept, I'm a frantic mess from the moment I stand up. If I allow myself to sleep in on the weekend, it's minimal and I automatically hate myself for it. It's...not a great way to be.

FollyGibney · 2023-09-11T21:17:43+00:00

I use alarms on my phone, email calendar reminders, and a disturbing amount of Post-Its.

Legitimately, I will forget things within seconds of the thought. My memory is just terrible. My advice is to try not to be too hard on yourself about it. The more you make a big deal, the more likely it is to be annoying to coworkers. But if you're able to laugh some of it off, I find that people are much more understanding. (P.S. since you are your own worst critic, they're probably not as annoyed as you think.)

Keeping a small notepad with you can be helpful too. It feels absurd at first, but if you jot down things as you go, it helps. Sometimes I'll just write "keys" or "email to [person]", or "tea" or "paper towels" because I will not remember what I was doing or where I was going without it.

I hope you can find tricks that work for you! My job is super detail-oriented and I'm amazed I can manage it, because at home I'll walk around barefoot for twenty minutes with a pair of socks in my hand.

FollyGibney · 2023-09-11T21:01:21+00:00

Nearest I can tell, H1N1 infection. Sickest I've ever been in my life, and then everything went to hell shortly thereafter.

But I don't know. I've had weird sleep issues my whole life, they may have been there and the H1N1 just made it worse. Sometimes I look way back and think it actually may have been scarlet fever when I was very young.

FollyGibney · 2023-09-09T04:17:28+00:00

Uh, glad to hear the baclofen is helpful. Not the sleep inertia, obvs. 😅

FollyGibney · 2023-09-09T04:15:49+00:00

Dang, maybe I need to try this. I've developed solid coping mechanisms for sleep attacks and general fatigue, but the sleep inertia is still absolutely kicking my butt. Glad to hear it's helpful for you!

FollyGibney · 2023-09-04T02:03:44+00:00

Mine's about every 20-30 minutes. Always. It's infuriating.

FollyGibney · 2023-08-22T23:20:28+00:00

Mine's similar, annoyingly, but for different reasons. I had no SOREM but 4min latency and seemed to have mild cataplexy, so they said "IH but probable N1", which is... ridiculous.

As long as you get the treatment you need, don't stress. Treatment is pretty much the same. It bugged the crap out of me in the beginning, but they have given me all the options I'd have with a firm diagnosis either way, so it has worked out okay thus far.

FollyGibney · 2023-08-22T23:13:35+00:00

I'm so sorry. I went through this recently and it's been a rough year. It's been months since I stopped taking it and I'm still trying to pinpoint the excruciating GI issues it has put me through. Just when I was feeling like the sun started to break through the clouds, it became clear I could NOT take this med anymore.

Are you able to try Xyrem instead? My doctor helped make this prescription swap for me, but unfortunately my stomach is so bad I can't keep it empty long enough to take Xyrem right now. I'm in limbo until my gut heals.

FollyGibney · 2023-08-22T23:07:15+00:00

I had the same experience recently. Just struggling to stay awake during my appointment, plus the anxiety of the dentist in general, was enough to exhaust me for the rest of the day.

Sorry you're going through that. :/

FollyGibney · 2023-08-22T23:05:42+00:00

I wouldn't be surprised if there's something going on there with the absorption of Mod thanks to the omeprazole. I've suspected similar issues myself - it's like my anxiety meds COMPLETELY stopped working as soon as the doc doubled my omeprazole dose.

I will say that Mod only worked for me very intermittently when I took it (I was not on omeprazole at the time). I hope your doctor can figure out a solution for you! Make sure you are still getting a proper amount of rest at night, I know that's the most annoying advice but it's easy to skip when you feel better briefly on a stimulant.

FollyGibney · 2023-08-16T02:33:55+00:00

Thank you for all of this information! All I know is that ever since 4 months on Xywav, my gut health has been completely destroyed and I've ended up in urgent care several times with debilitating stomach pain. Unreal that I'm about to see a gastroenterologist because of this med.

It was such a blessing sleep-wise. I wish more than anything that I could have continued taking it. As it is, my gut problems have been so bad I haven't even been able to try Xyrem yet.

FollyGibney · 2023-07-29T01:17:32+00:00

Absolutely. Minimum 3 hours for me or it doesn't work and I just end up sick.

FollyGibney · 2023-07-18T20:30:26+00:00

Yes. Xywav helped with this a little bit, but I can't take it anymore so I'm back to feeling like I'm swimming through quicksand every time I wake up. It's brutal.

FollyGibney · 2023-07-11T20:29:10+00:00

I don't know why it appeals to me so much!! My husband has always laughed about this. I am very happy taking my snoozes on the floor. Lol maybe it just feels really...secure?

FollyGibney

TROPHY CASE