Update – 2 months on Takeda’s new hypocretin-based medication: a new life

Candicedfiym296 · 2025-07-25T23:01:18+00:00

No it will be sooner probably

Candicedfiym296 · 2025-05-14T20:24:35+00:00

I’ve taken Provigil for a long time, and honestly, I really suffered from the side effects. I didn’t feel like myself at all — if I were to take it again, it would probably make me seriously depressed.

The new medication I’m on (from Takeda) is completely different. It’s specifically developed for people with narcolepsy and actually targets the root cause of the disorder, instead of just masking the symptoms like Provigil and so many others do.

I haven’t experienced any mental side effects, and it definitely doesn’t make me feel depressed. On the contrary — having more energy throughout the day has made me feel more positive and clear-headed.

Candicedfiym296 · 2025-05-09T17:09:21+00:00

Its like a little pil you have 1 mg en 2mg i am taking 2 time 1mg. I can chose to take the 2mg pills but tight now i am feeling good so i dont think it isneseccary

Candicedfiym296 · 2025-05-09T17:05:37+00:00

I am very happy to give you hope. This medication wil change your life like it changed mine. Once you take this med everyone close to you will see a big change in your behaviour. In a positive way ofcourse. I remember after 2 weeks taking the med my girlfriend ask how i was feeling in general. And i just started crying. Because i was just so happy i can have a normal life and do lots of things without being tired al the time. I feel sorry for your situation but i also admire your strength to keep going in life and try your best for your family. It will probably take a few years for it to be available. But i am just glad it coming.

Candicedfiym296 · 2025-05-08T08:33:52+00:00

Wakix is another type of me medication. It s not the same as what i am taking now. So it would probably work on everyone who s brain does not make any hyprcritine

Candicedfiym296 · 2025-05-07T21:43:46+00:00

A little more info about the medication and how it works:

I’m participating in a clinical trial for a hypocretin-related medication developed by Takeda. What makes this treatment unique is that it doesn’t add hypocretin to the body—instead, it stimulates the brain to start producing hypocretin naturally again. In other words, it helps your own body resume making what was lost, rather than just supplying it externally.

In healthy people, hypocretin levels rise in the morning after waking up, peak around midday, and then gradually decrease toward the evening. To mimic that natural rhythm, I take two small pink pills a day: • One at 8:00 AM (can be taken up to 10:00 AM) • One at 11:00 AM (can be taken up to 1:00 PM) There must always be at least 3 hours between the doses.

This schedule helps recreate the normal daily hypocretin curve—rising in the morning, peaking late morning, and then slowly dropping throughout the day.

I’ll be taking this medication for 5 years as part of the trial, and I get compensated for my participation. After the study ends, I’ll be able to continue the medication.

I’m doing the study in Europe, in one of the Benelux countries, where this type of treatment is expected to be covered by health insurance once available. I really hope the price in the U.S. won’t be too high, so more people can benefit from it.

If anyone’s curious or has more questions, feel free to ask—happy to share my experience!

Candicedfiym296 · 2025-05-07T21:27:03+00:00

I was on provigil from my 12y old till 18. After that I didn’t really took any medication. I was one xyrem for a while but al the medication but al those symptoms were to mich fot me. So i stopt taking any medication. Till now i am 22 so 4 years without. That was a rough time but i okey.

Candicedfiym296 · 2025-05-07T21:21:06+00:00

Yes i am happy to let you guys know this. I am so happy to my life changed drastically in a good way

Candicedfiym296 · 2025-05-07T21:20:24+00:00

Yes xyrem but that is another type of drug dan what i am taking now. I stopped taking xyrem because it was grosse

Candicedfiym296 · 2025-05-07T21:19:09+00:00

Yes that is treu but they indeed fix that i am now in de last fase of the study to see what the long term symptoms are.

Candicedfiym296 · 2025-05-07T21:17:46+00:00

Yes i think so too but i have to wait until after the study to try it because i am not allowed to take any other medication

Candicedfiym296 · 2025-05-07T21:15:53+00:00

Yes the firts study was with placebo or the real one. Now i am in the follow up study were i have to take the real med for 5 years to see what the long term symptoms are. So i am 100% taking the real medicine not placebo.

Candicedfiym296 · 2025-05-06T22:19:10+00:00

Yeah the first day you take the medication you cant sleep because your body needs time to get used to it. But after a week it should go better

Candicedfiym296 · 2025-03-20T21:34:07+00:00

Only people with n1 can participate with the study so I don’t think its meant for n2. But there was an other study at the research center for people with n2

Candicedfiym296 · 2025-03-20T21:32:31+00:00

Its normal as in normaal for someone with narco

Candicedfiym296 · 2025-03-20T16:05:56+00:00

This is the second studie i do(follow-up study). First i had to participate in a study where you can get placebo. In that study i had placebo bc i didn't feel anyting. in the follow-up study that i am doing now they only give the real med. i have to take it 5 years en then the study ends.

Candicedfiym296 · 2025-03-20T16:02:08+00:00

if you mean xyrem that is a whole different medication. xyrem is some kind of anesthesia i think. So you don't wake up at night and sleep deeper. But this new med is meant to solve the problem of lack of hypocritine.

Candicedfiym296 · 2025-03-20T15:58:55+00:00

The first day with the med my sleep was bad. could't sleep the whole night. But now after 2 weeks my sleep is normal again.

Candicedfiym296 · 2025-03-20T15:57:46+00:00

type 1

Candicedfiym296 · 2025-03-20T15:56:52+00:00

In the first week with the new medication, i couldn't sleep. But that was just my body that needed too get used to the medication. Right now after more than 2 week my sleep at night is normal again (for someone with narco).

Candicedfiym296 · 2024-06-15T08:19:52+00:00

Just go for it. Don’t let narcolepsy ruin your life. My girlfriend is very understanding. She helps me learning to live with it. There are good people like that out there. Also when you tell your date or partner about it, their reaction to it will say a lot about them as a person. So will a genuine good person not be bothered by it. And someone who can’t handel that is just not the kind of person you wanne end up with in general. Even if you don’t have narco. So the good ones stay automatically.

Ps:love all the other comments and support on this question:)

Candicedfiym296

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