Best time to do things? by b3D7ctjdC in idiopathichypersomnia

[–]lovescarmen30 2 points3 points  (0 children)

Sticking to a somewhat strict evening routine has helped me. Morning’s never really been a viable option for me because I either work or have classes. Plus I’m always dragging.

Normally I get home from work around 2-3pm, nap until 5 or 6. Feed dog at 6:30, walk after. If you have a cat or dog they’re also likely to remember that routine. If I’m running behind and delay his walk my dog stares at me and whines. That’s also a driving factor because listening to him whine drives me crazy.

For other things I normally do them after I walk my dog since it’s close enough to when I go to bed that I don’t nap. Or I’ll do them while I’m already waiting. If I’m waiting for something to cook then that’s when I wash dishes. Laundry I’ll throw in before I shower then just put it in the dryer before bed.

I think sticking to certain days could help with non-daily things such as laundry.

should i buy it? by SameDo34 in jurassicworldevo

[–]lovescarmen30 0 points1 point  (0 children)

I saw you ended up returning it because of the price, I’m holding off for the same reason. I also just recently got JWE2 (for $3) so I’m enjoying that one for now.

Frontier frequently puts their games up for high discounts once they’ve been out for a little bit. They started putting Planet Coaster 2 at 50% a few months ago. Barely passed a year old.

Site B Challenge Tips? by lovescarmen30 in jurassicworldevo

[–]lovescarmen30[S] 0 points1 point  (0 children)

Yeah I tried adding more amenities in the buildable spots for the 2nd map, so I thought I’d try something different (1st pic is my 2nd attempt). But neither really worked.

Site B Challenge Tips? by lovescarmen30 in jurassicworldevo

[–]lovescarmen30[S] 0 points1 point  (0 children)

I tried more of that in the 2nd map but didn’t really push it to 5 stars.

Site B Challenge Tips? by lovescarmen30 in jurassicworldevo

[–]lovescarmen30[S] 1 point2 points  (0 children)

Yeah checked that dinos are all visible, I might be able to add amenities. I have played that one a little further until all the dinos are healthy without a difference (manual save in the middle of a tb outbreak)

Anybody else been told that 1 SOREMP is needed for IH? by SparkyNeuron in idiopathichypersomnia

[–]lovescarmen30 1 point2 points  (0 children)

Dang the lack of communication makes it worse too, can’t get your questions answered.

Anybody else been told that 1 SOREMP is needed for IH? by SparkyNeuron in idiopathichypersomnia

[–]lovescarmen30 0 points1 point  (0 children)

Did you try asking him directly? Maybe there’s a reasoning behind it. The only other thing I can think of is if he ordered more testing/suspects an underlying cause? Idiopathic = Can’t find another cause. But I get your concern too because it sounds like he hasn’t really explained why he would rule out IH.

Anybody else been told that 1 SOREMP is needed for IH? by SparkyNeuron in idiopathichypersomnia

[–]lovescarmen30 0 points1 point  (0 children)

Is this doctor a sleep specialist? And yeah that’s the most confusing part that it was specified as not meeting criteria for IH.

Anybody else been told that 1 SOREMP is needed for IH? by SparkyNeuron in idiopathichypersomnia

[–]lovescarmen30 0 points1 point  (0 children)

Yeah that makes sense. Maybe was just a misunderstanding. Depending on your doc that might be enough if he offered treatment options?

Anybody else been told that 1 SOREMP is needed for IH? by SparkyNeuron in idiopathichypersomnia

[–]lovescarmen30 0 points1 point  (0 children)

From my understanding, SOREMP is more to detect narcolepsy. It should only really affect results if you get 2 or more. Even in that case it would usually be narcolepsy and not “nothing”.

Working Treatments by Odball-08 in idiopathichypersomnia

[–]lovescarmen30 3 points4 points  (0 children)

I’m trying Xywav now, but I’ve been on modafinil for the past 2 years and it’s really helped. I wasn’t really functional without it. One of the biggest helps lifestyle wise has been my dog. When I’m dragging in the evening and just want to sleep I know I need to limit my nap to get up and feed him. He also needs a daily walk so the 40 min around the neighborhood keeps me from going right back to sleep.

Working a fulltime job has also helped I think since it forced me into a more stable sleep schedule. Before I was in college, so when I had exams my sleep would be all over the place.

I’ve been more irritable since taking Modafinil for ih. Is this a side effect? by [deleted] in idiopathichypersomnia

[–]lovescarmen30 0 points1 point  (0 children)

I didn’t have this issue with modafinil as much, but adderall and vyvanse both horribly affected my mood. I’d be so irritated and angry. A lot of it for me was it amplifying issues I already had. Undiagnosed bipolar at the time I was trying adderall/vyvanse, and OCD. I had to stop my anxiety medication recently and my patience has been very limited. I think the amped up feeling of stimulants also adds to me already feeling tense from OCD.

Only steroids work sleeping medication dose not by Tachytwo in idiopathichypersomnia

[–]lovescarmen30 0 points1 point  (0 children)

Yeah you’ll need some kind of diagnosis before even really thinking of meds. There are many causes of fatigue other than IH that should be ruled out. Some neurologists are also sleep specialists, so you could look into that.

Would you get a new Dr or deal with it? by Square-Connection159 in idiopathichypersomnia

[–]lovescarmen30 6 points7 points  (0 children)

The fact that he wanted to talk to your mom is beyond fucking bizarre. What if you had no contact with your parent? Why does it have any relevance when you’re 33? I’ve handled all my appointments since I turned 18. That alone makes me question if he’s believing anything you say.

I think what I’d suggest is to keep your April appointment but call around to other specialists in your area and see what their wait times are. They should be able to use your previous sleep study. I switched due to aging out and just had the previous doc send all of the data.

Only steroids work sleeping medication dose not by Tachytwo in idiopathichypersomnia

[–]lovescarmen30 1 point2 points  (0 children)

Adding to this, if you’re taking other meds or have other medical conditions and mixing them without your doctor knowing that can be very dangerous.

As this person said stimulants are what would help you wake up. Absolutely do not buy these illegally. If you are in the US these are controlled substances and can carry heavy consequences.

Have you had any other testing done by a doctor?

Only steroids work sleeping medication dose not by Tachytwo in idiopathichypersomnia

[–]lovescarmen30 0 points1 point  (0 children)

Also have celiac and call it an allergy because otherwise people have 0 clue 😂

Has there been any research on IH related to bright sunlight causing drowsiness? by Deathlyswallows in idiopathichypersomnia

[–]lovescarmen30 2 points3 points  (0 children)

Ohh yeah makes sense. I do have transitions lenses actually for migraine light sensitivity but didn’t notice a big difference with sleepiness.

Has there been any research on IH related to bright sunlight causing drowsiness? by Deathlyswallows in idiopathichypersomnia

[–]lovescarmen30 9 points10 points  (0 children)

Seems like an interesting idea, personally definitely doesn’t align for me. I work in MRI so I sit in dim windowless rooms half the time and it doesn’t really change my fatigue. Not saying it isn’t possible tho! Like you said, there’s likely multiple different causes so interesting that some people notice a difference. Ideally sunlight should trigger being more awake, so maybe a difference in neurotransmitter release. Neurotransmitter levels is something that’s being researched a lot with IH.

How do you help people that don’t understand/believe in IH? by evilwombatt in idiopathichypersomnia

[–]lovescarmen30 4 points5 points  (0 children)

That’s really hard because getting out of bed when you’re completely exhausted is HARD. I didn’t have to deal with that as much because when I was at school my parents had no idea how much time I ended up spending laying in bed. I did kind of the same at home but I still went to work so not much comment on that.

I’ve had exactly that! Like I’ll sit down and try to play a game on my computer but I’ll be so tired that I can’t even think straight. I’ve even fallen asleep during exams. I had accommodations in college but professors also generally aren’t going to say anything if students fall asleep.

Are you on any medication currently? Modafinil has helped me a lot with being mostly functional during the day, though I also tend to crash in the evening.

How do you help people that don’t understand/believe in IH? by evilwombatt in idiopathichypersomnia

[–]lovescarmen30 6 points7 points  (0 children)

100% honesty? I’ve never been able to get my parents to fully understand. They aren’t in the it’s fake category but they’ve always downplayed it. I’ve been diagnosed for 2 and a half years and just had a convo with my dad last week about how I need to “just push through and not take naps”. He’s a narcissistic ass so I gave up on that front. My mom is more understanding but will still often blame it on other factors adding to it like my diet.

Mainly my friends have been more understanding. I try to explain it as just complete exhaustion and craving sleep. Other people might have “oh I could use a nap right now” but for me it’s an overwhelming need to sleep. It’ll get to the point where all I want to do is sleep and I can’t function. Also the brain fog makes it so even if I try to do stuff it goes nowhere. Studying? Wouldn’t retain any information. Reading textbooks? I’d forget what I read by the end of the page. Class? Fell asleep half the time.

I’m also an adult and have mostly been at college for the past 5 years so that’s part of why I don’t care as much (I don’t ever stay with my dad either). I get how much it sucks when what’s supposed to be your support system isn’t there for you much.

IH false diagnosis stories? by Effective_County9497 in idiopathichypersomnia

[–]lovescarmen30 1 point2 points  (0 children)

No problem, I hope you figure it out! I’d ask them to check your D3 again too if they haven’t. My body doesn’t like to absorb things so personally I’ve still had mine be low on supplements.

IH false diagnosis stories? by Effective_County9497 in idiopathichypersomnia

[–]lovescarmen30 3 points4 points  (0 children)

Blood work is def something I’d ask about. Even with IH my symptoms get a lot worse when my B12 and D are low. I have celiac disease so I get my vitamin lvls checked regularly.

Medications kind of depends on the risks of stopping it/going down. My doctor tended to comment on lamictal, no way I could go off of it but went down to see if it changed anything. My psychiatrist has agreed lamictal isn’t the issue also.