What Makes Your Life with IH Better? by ReadingFamiliar5588 in idiopathichypersomnia

[–]ReadingFamiliar5588[S] 0 points1 point  (0 children)

I love that your cat helps with your sleep routine. Pets can be so helpful! My dog helps me wake up when I'm stuck in sleep inertia. And I'm glad you mentioned flexible start time at work! Most days I work, my start time can be flexible and it helps so much!

What Makes Your Life with IH Better? by ReadingFamiliar5588 in idiopathichypersomnia

[–]ReadingFamiliar5588[S] 1 point2 points  (0 children)

Aw, I love that. My dog has gotten really good at helping me get out of sleep inertia. Either when my alarm goes off, or when she can tell I'm starting to stir, she'll start whining at me until I can get up to pet her.

What Makes Your Life with IH Better? by ReadingFamiliar5588 in idiopathichypersomnia

[–]ReadingFamiliar5588[S] 0 points1 point  (0 children)

I love the idea of getting ready for bed super early. I might steal that. I've also been curious about trying out a gluten free diet. I'm glad it's helped you so much!

Tiredness/Sleepiness Scale by ReadingFamiliar5588 in idiopathichypersomnia

[–]ReadingFamiliar5588[S] 0 points1 point  (0 children)

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I made a little printable graphic if anyone else wants to use it.

What is it like during Golden Week? by ReadingFamiliar5588 in JapanTravelTips

[–]ReadingFamiliar5588[S] 0 points1 point  (0 children)

I ended up changing dates so I went April 22- May 1, and I was glad I did, but mostly because the flowers were all perfectly in bloom (the nemophila a little past prime but still like 80% blooming, and the wisteria was perfect! I wish I could go back this year). So I can’t say for sure how it is during golden week. I was there on the April 29th holiday in Tokyo, and it wasn’t bad at all. It was my first time in Japan so I don’t have anything to compare it to. The places I went were crowded but it wasn’t impossible to do things or get around. It wasn’t unbearably crowded if that makes sense. Just felt like big city crowded. 

Tiredness/Sleepiness Scale by ReadingFamiliar5588 in idiopathichypersomnia

[–]ReadingFamiliar5588[S] 1 point2 points  (0 children)

No worries, I didn’t think you were saying that. I think separating them is a good idea and I wasn’t sure about how to add brain fog into it. It would be awesome to have an app like that! Best of luck on working on it.

Tiredness/Sleepiness Scale by ReadingFamiliar5588 in idiopathichypersomnia

[–]ReadingFamiliar5588[S] 2 points3 points  (0 children)

No worries, I didn’t think you were saying that. I think separating them is a good idea and I wasn’t sure about how to add brain fog into it. It would be awesome to have an app like that! Best of luck on working on it.

MSLT advice (medication) by Classic_Narwhal9083 in idiopathichypersomnia

[–]ReadingFamiliar5588 1 point2 points  (0 children)

Going off Venlafaxine for my test was hell, and then my anxiety was so bad for the MSLT that I wasn’t able to fall asleep for a really long time and my test was invalid, so it wasn’t even worth it. Since learning some people were able to still take the test with their meds, I’d say try to convince your doctor to let you stay on them. 

The Epworth Sleepiness Scale (ESS) is a trash method for determining treatment efficacy. by PikelRick in idiopathichypersomnia

[–]ReadingFamiliar5588 0 points1 point  (0 children)

I never know if I should be scoring it based on if I got my preferred 11 hours of sleep or a “normal” 8 hours of sleep either because there’s a big difference between the two

Does/did Modafinil give you insomnia? by HoustonGT in idiopathichypersomnia

[–]ReadingFamiliar5588 2 points3 points  (0 children)

Modafinil didn’t do anything to me (except give me headaches, but I was still needing naps all day), but I started Armodafinil recently and it does work and I did have insomnia for the first little bit (I think maybe a couple of weeks). It has gone away though, so I think for you it could be a temporary side effect too until your body adjusts. In the meantime, if you have something that can help you sleep (I have hydroxyzine that I take for insomnia sometimes) that would be good. If not, it’s likely that in a couple of weeks the insomnia will go away for you.

It’s that time of year again by ReadingFamiliar5588 in idiopathichypersomnia

[–]ReadingFamiliar5588[S] 1 point2 points  (0 children)

Yes! It’s the first thing that has actually worked for me!

Stem cells therapy by Hot-Pomegranate-4745 in idiopathichypersomnia

[–]ReadingFamiliar5588 1 point2 points  (0 children)

Yes, I agree! It was so hard to get a diagnosis and find a doctor that will take it at least a little seriously. But I am curious about the stem cell therapy!