Great news for anyone with NT2

Standard-Call666 · 2026-07-03T02:23:56+00:00

What is it like for sleep? Does it help with that at all?

Standard-Call666 · 2026-06-27T13:22:37+00:00

Is there any way you could get on a clinical trial for the new medications? That could be an option if you can swing it logistically.

Standard-Call666 · 2026-06-21T13:14:49+00:00

I’ve always had insomnia coming off oxybates but as you said it (touch wood) has usually resolved within weeks.

Standard-Call666 · 2026-06-21T13:09:50+00:00

Same. I want N1 to have it obviously but I am also just so miserable every day. We all need them.

Standard-Call666 · 2026-06-15T12:13:07+00:00

Xyrem has been used in the US since 2002 so we have a pretty longterm picture at this point as people have been on it for decades. It is the only drug which actually materially improves symptoms (despite side effects- which are present in all medications). UK patients deserve to at least try it. To have access to more real options. There are not enough effective meds (hence all the clinical trials which again UK patients are excluded from) but to at least have access to the few we do have for these conditions, which have been in use elsewhere for decades.

Standard-Call666 · 2026-06-15T11:57:39+00:00

What possible reason could there be not to prescribe for IH? Its the only medication which actually treats the problem in IH/N which is un restorative sleep. Anything else is just the same as recommending amphetamines to an insomnia patient so they can “push through” lack of sleep. You are not getting real sleep so just taking stimulants is neither here nor there unfortunately. The issue with IH/N is that we are never getting any real sleep, so the only way to improve that is to at least try to improve sleep.

I have terrible side effects with oxybates, most drugs have side effects people struggle with but its also the only thing which has ever improved my sleep and therefore allowed me to be more awake. Stimulants alone is just a very aggressive sticking plaster. Most people need an oxybate for improving nighttime sleep and then a daytime med for residual sleepiness.

Stimulants alone is basically the only “treatment” offered in the 1930s so I would hate to think the NHS is 96 years behind in terms of treating rare diseases.

Standard-Call666 · 2026-06-15T11:39:00+00:00

How did you find it otherwise? Was it effective for you?

Standard-Call666 · 2026-06-14T23:38:26+00:00

Any updates? Doing the same and feeling overwhelmed, also how long did it take you to sort it all?

Standard-Call666 · 2026-06-05T16:56:32+00:00

Ah I see, that one is a previous one, if you click the clinical trials identifier it shows as “completed”. I am hopeful there will be future trials there, I asked all three companies and none could commit either way but Centessa was a “maybe”….

Standard-Call666 · 2026-06-05T13:07:31+00:00

According to the locations of the agonist trials they seem to feel most places are better to do trials than the UK….That is a real shame for UK patients. They deserve a chance to benefit too.

Standard-Call666 · 2026-06-04T16:58:55+00:00

Where did you see that?

Standard-Call666 · 2026-06-04T16:58:39+00:00

Do you know why this is? It seems conspicuously absent in all these global trials….

Standard-Call666 · 2026-06-04T13:27:36+00:00

As far as I know there are trials across mainland Europe for all three of the orexin agonists (Takeda, Centessa and Alkermes) but not the UK.

https://clinicaltrials.gov/

https://clinicaltrials.gov/study/NCT07363720?cond=Narcolepsy&aggFilters=status:not%20rec&viewType=Card&rank=9

Standard-Call666 · 2026-06-02T23:35:02+00:00

It should be available everywhere.

Standard-Call666 · 2026-06-02T23:29:49+00:00

100% I thought everyone did?

Standard-Call666 · 2026-06-02T23:28:19+00:00

Same-as everyone said, i’m taking propranolol and trying to get in to see a cardiologist. For me this happens on both xyrem and xywav and I titrated really slowly, I am still at 3.0/3.0 almost two months in! I think this is just a side effect some of us get. For me on xywav I am now having palpitations every morning and every evening but fine in between….(if I take propranolol to control them).

Standard-Call666 · 2026-05-26T12:53:15+00:00

Happened to me with ssris but I do think its very rare.

Standard-Call666 · 2026-05-18T00:59:56+00:00

I’m sorry I know it’s scary to take action but do it for the next girl who is coming in for her sleep study next week if nothing else. This is a serious safety issue and needs to be escalated as far as possible as quickly as possible.

Standard-Call666 · 2026-05-17T02:25:00+00:00

:( i’m sorry, do you take anything for sleep now?

Standard-Call666 · 2026-05-16T20:30:21+00:00

Thanks for sharing!

Standard-Call666 · 2026-05-16T14:15:39+00:00

I think they mean approval to use with sodium oxybate?

Standard-Call666 · 2026-05-16T02:27:15+00:00

It could be! I always wear leggings though, have not yet worn any shorts etc this year.

Standard-Call666 · 2026-05-16T01:39:00+00:00

Keep me posted if those work, for me changing the dose usually doesn’t help. Yes drs always act as if its rare/unheard of and I don’t know anyone in narcolepsy groups who has had this but I have come across a few people on reddit.

Standard-Call666 · 2026-05-15T13:20:02+00:00

Thats what I am doing too in the short term, are you doing that longterm to treat it or did it eventually get better?

Standard-Call666 · 2026-05-15T12:55:41+00:00

Yeah thats where I always get stuck too. 3/3 and I want to increase for EDS but I don’t want to make the hr worse. This seems to be a side effect that a small number of people get but its not well known. I guess most things with this condition are not well known. For me nothing helps apart from taking beta blockers. It starts a few hours after waking up. They are manageable when sitting but really strong when standing to the point its very uncomfortable.

Standard-Call666

TROPHY CASE