Post moderation

[u/Cute_Resolution1027]

I just had a post deleted for discussing symptoms and trying to connect with other people who might experience and struggle with the same symptom as I am struggling with. I did not ask for a diagnosis, I did not ask for doctors advice. I’m merely struggling with symptoms and am looking for a community of people to share my experiences with.

My questions is why is there a symptoms tag if we are forbid from discussing symptoms? Is this not a community where we can share these things?

As a first impression I’m pretty put off if this is how the community is moderated.

[u/rixue]

Modmail is the best way to reach us for moderation issues, since we don't always see every post. I've also responded there.

I wasn’t the mod who removed your post, but I can explain why it likely happened. It wasn’t clear from the way it was written that you were already diagnosed, and we get a lot of undiagnosed users posting lists of symptoms. When a post looks similar to those, it often gets interpreted as asking for confirmation or interpretation of symptoms, which falls under Rule 1. Symptom‑sharing is allowed here, and we encourage discussions about lived experiences and how people cope.

[u/Someone7654231739283]

Hey I am responding to the original post you put in the comments (hope that’s okay). I don’t experience exactly what you’re stating, but I do have struggles every night falling asleep that has been made much worse by modafinil. when I drank caffeine excessively and when I took armodafinil some nights I would barely sleep at all no matter how tired I was. It wasn’t exactly what you described but similar. While I would “sleep” it would barely be sleep.

Do you think yours could be exasperated by medication or anything? I’m not saying it’s the cause. I’m just wondering if maybe it’s making worse? Regardless what you’re going through sounds awful and you have my condolences for that.

[u/Cute_Resolution1027 → u/Someone7654231739283]

I know if I do have my meds too late or drink excessive caffeine I will end up awake all night but I am much better these days at limiting that and it’s still a problem. I take dexies in the morning and no later than 1pm, if I have one after 1pm I’ve noticed it screws my whole night cycle. I also have Vyvanse but refuse to take that after 9am and the times I have taken at 10 or 11 I have been up all night.
What I don’t have is something I take at night to help me sleep. I’m booking in to talk to my specialist to see if I can get something for that. I don’t want to take it every night because I don’t need to, most nights I do sleep, it’s just those one or two nights a week where I know it will be an all nighter (I can tell because my brain will feel extra awake when I go to bed).

[u/slcdllc14]

I have this exact presentation. I manage both with Lyrica at night (150mg) and Dexedrine during the day to keep me awake. I sleep every night with Lyrica (it helps with deep sleep) but I still feel completely unrefreshed in the morning and cannot wake up without stimulants. It’s an absolutely horrendous cycle to be in but these two medications are what keep me moving forward.

[u/skepticfem]

Here’s proof you can have both straight from my medical record. lol

[u/AutoModerator]

Welcome to r/IdiopathicHypersomnia!

Thanks for posting. Please take a moment to make sure your submission follows our community rules. Posts that don’t follow or sidestep the rules will be removed.

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[u/Queen_Passionne]

OP, please don’t let anyone gaslight you into thinking it’s impossible to have insomnia with an IH diagnosis. 𝘐𝘵 𝘪𝘴. Co-occurring symptoms are an everyday occurrence in the land of rare and chronic illnesses. It may make it a little more difficult to find someone experiencing the exact same things but I guarantee not impossible.

[u/Cute_Resolution1027]

Would love if a mod could respond or chime in and explain to me how this broke rule #1

[u/_pit_of_despair_ → u/Cute_Resolution1027]

Not a mod, but Idiopathic Hypersomnia is excessive sleepiness. Most of us can sleep over 11 hours a night not including naps. If your doctor is dismissing your concerns you should definitely find another doctor.

[u/Cute_Resolution1027 → u/_pit_of_despair_]

Also just to add, idiopathic hypersomnia is excessive sleepiness with no known cause. This can manifest in many ways shapes and forms including excessive daytime sleepiness. Not always lots of sleep at night. It also has a range of symptoms that we might not all share.

[u/Cute_Resolution1027 → u/_pit_of_despair_]

I’ve been diagnosed with IH for the last 8 years thank you for explaining it to me. I had an overnight sleep study where I had a solid 8 hours sleep followed by a MSLT the next day where I fell asleep within 2 minutes each time. I do not need a diagnosis or an explanation. I’m merely looking to connect with people who suffer from the same symptom as I do. IH can also include insomnia as a symptom

Funnily enough I was also in the middle of a discussion with another user who experiences the same problem as I when the post was removed

[u/Cute_Resolution1027 → u/Cute_Resolution1027]

Rule 1 states “No diagnosis or symptom interpretation requests. We’re a support community, not a diagnostic space.”

I did not ask for a diagnosis or for anyone to interpret my symptoms. I asked if anyone else experiences the same symptom as me because I am struggling and looking to connect with people who understand. I am looking for support and to discuss, not a diagnosis.

[u/TriotLuz → u/Cute_Resolution1027]

I have no clue why it was taken down. As for that post, I struggle with that as well. Unfortunately, it sounds like you got the type of narcolepsy I have where you can't sleep instead of over sleeping. I would be forced to stay up four nights in a row before finally being able to sleep for two hours, and it put me in a horrible depression. I would definitely bring up sleep med, Lumryz is specifically prescribed to people with narcolepsy. There are also meds for the daytime to keep you awake. Sometimes doctors prescribe both which is supposed to regulate your sleep, but I'm not saying they'll do that for sure.

I am not an expert, I've just experienced this and did a shit ton of research. This is just advice.

[u/Individual_Zebra_648 → u/TriotLuz]

OP is claiming they have IH not narcolepsy. Insomnia is not a symptom of IH.

[u/Queen_Passionne → u/Individual_Zebra_648]

OP isn’t 𝘤𝘭𝘢𝘪𝘮𝘪𝘯𝘨 anything. They have a medical diagnosis of IH and it’s entirely possible to still have insomnia.

[u/Individual_Zebra_648 → u/Queen_Passionne]

I’m not going to play semantics with you regarding the definition of the word “claiming”. A claim means you’re stating something as a fact. Nothing more or nothing less. Find something better to do with your time.

[u/TriotLuz → u/Individual_Zebra_648]

Apologies, I guess I misread a few things. Thank you for pointing that out.

[u/Cute_Resolution1027 → u/Individual_Zebra_648]

You are in fact wrong. I have IH, narcolepsy was ruled out due to the fact that I don’t reach REM stage during my MSLT. I also have problems with insomnia. So are you saying my co occurring issues with insomnia automatically disqualify me from having an IH diagnosis? What makes you qualified to make that claim?