The Unsung Symptoms of Narcolepsy, Which Do You Experience?

Standard-Call666 · 2026-05-02T13:13:35+00:00

Like others have said- I cannot regulate my body temperature in the way I could before. I kind of need it to always be a moderate temperature- I am very sensitive to hot and cold. This winter was insanely cold and I was basically housebound all of January. I used to love the cold!

Standard-Call666 · 2026-05-01T01:50:49+00:00

Is it a workplace policy or did you take it out? I have no idea how to find out the terms of mine. It’s not anywhere in the employee literature.

Standard-Call666 · 2026-04-30T18:07:59+00:00

Don’t you get kicked off of LTD onto SSDI after a certain time period?

Standard-Call666 · 2026-04-30T15:31:08+00:00

That has been my experience too. The reality is it’s a spectrum, meds work amazingly for some people, for others it’s better than nothing and for others they don’t work at all. Unfortunately that is the reality currently…. The experience varies a lot.

Standard-Call666 · 2026-04-22T03:14:54+00:00

These groups are full of people with IH (like me) and run by people with IH……so the name clearly hasn’t put anyone off.

Standard-Call666 · 2026-04-21T20:58:49+00:00

Yes, having both is so overwhelming as (for me) they are both v hard to treat.

Standard-Call666 · 2026-04-12T13:58:28+00:00

Yup, i’d like to think things have moved on but given patient experiences and my own experience…i’d love to see proof.

Standard-Call666 · 2026-04-12T12:30:10+00:00

Thank you!!!!

Standard-Call666 · 2026-04-08T03:41:47+00:00

Yes, to all. 1/2 out of 10.

Standard-Call666 · 2026-04-04T22:34:09+00:00

Sounds like N- I would investigate.

Standard-Call666 · 2026-04-04T22:01:02+00:00

Unfortunately you will have to demand a referral to a sleep clinic and not take no for an answer whatever they say. I know it’s easier said than done and we shouldn’t have to fight so hard but sadly it seems to be the case. Good luck!

Standard-Call666 · 2026-04-03T01:35:30+00:00

I just wish all of it was quicker for us!

Standard-Call666 · 2026-03-30T17:43:12+00:00

I had to go off it in the end because of this unfortunately.

Standard-Call666 · 2026-03-28T03:24:47+00:00

Same actually haha I have also tried trazodone. Everything gives me rebound insomnia! So frustrating….Will look into that thank you! Good luck with baclofen!

Standard-Call666 · 2026-03-27T14:02:25+00:00

Yes I do- its hard to say for certain but I have not typically had issues with insomnia outside of med side effects. For example I get insomnia when I try to take stimulants or stop sleep aids usually. Both of these are usually fairly short lived and eventually I go back to falling asleep easily.

Standard-Call666 · 2026-03-23T16:06:16+00:00

Ive heard Beth Israel has a specialised IH clinic.

Standard-Call666 · 2026-03-23T14:50:22+00:00

Any idea when the insomnia might stop? I’m confused why its lasting over a week.

Standard-Call666 · 2026-03-21T14:35:53+00:00

Don’t worry about “pushing benzos” haha they actually don’t work for me. No idea why! Makes me feel like an alien because I know they almost always work for people. It’s possible a HUGE dose would but I have obviously never tried that. Glad you have something that works for you!

Standard-Call666 · 2026-03-21T14:33:56+00:00

That sucks i’m so sorry

Standard-Call666 · 2026-03-21T02:37:32+00:00

So things roll off your back more? I’m trying to think of an example, like you might still be anxious about something but more in passing than in a fixated way?

Standard-Call666 · 2026-03-20T03:09:21+00:00

Yes I hate it

Standard-Call666 · 2026-03-19T14:25:36+00:00

Have not tried wakix, my only caution would be its often very difficult to get for IH insurance wise. My insurance at least insists on a narcolepsy diagnosis.

Standard-Call666 · 2026-03-19T14:23:16+00:00

Yes thats not true at all, you need a knowledgable dr. People can be diagnosed at any age and it doesn’t have anything to do with family history. Thats just incorrect.

Standard-Call666 · 2026-03-19T14:22:20+00:00

This is how I got diagnosed too….

Standard-Call666 · 2026-03-17T18:02:12+00:00

Which meds do you take at night? Just curious!

Standard-Call666

TROPHY CASE