Daridorexant (DORA) Withdrawal

C

ChrisD

Senior Member
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499
Location
East Sussex
Daridorexant - I've been on a low dose for 4 months and it's been the best sleep med I've had in terms of no side effects and a natural feeling sleep HOWEVER my GP stopped my NHS (UK) prescription from private script due to apparent new rules. You can only have it for 3 months, but I've only actually had one month but spread across 4...

I ran out while they are working out if they can prescribe me the other 2 months but I'm reconsidering if I will stay on it because I've rebounded pretty badly the last 5 nights. I was expecting this new sleep pattern to continue but I've been worse than before it, even with melatonin instead (which I was taking before).

So even though it seems great short term, I'm not sure this is the way long term. And now I have to decide whether to go back on, to go back to nortrip. To reset sleep cycle, or to go with naturals. Any advice welcome.

It seems that maybe the Orexin pathway masks other stuff going on in M.E. Officially it doesn't cause withdrawal but I feel that may be different with M.E. because there are abnormalities in the pathway.

It's concerning to experience this severe sleep disturbance again as I did when I first got sick, and to just have the rug pulled out from beneath me by the NHS.

Any tips or advice welcome in terms of any OTCs that can help tackle this!
Daridorexant - I've been on a low dose for 4 months and it's been the best sleep med I've had in terms of no side effects and a natural feeling sleep HOWEVER my GP stopped my NHS (UK) prescription from private script due to apparent new rules. You can only have it for 3 months, but I've only actually had one month but spread across 4...

I ran out while they are working out if they can prescribe me the other 2 months but I'm reconsidering if I will stay on it because I've rebounded pretty badly the last 5 nights. I was expecting this new sleep pattern to continue but I've been worse than before it, even with melatonin instead (which I was taking before).

So even though it seems great short term, I'm not sure this is the way long term. And now I have to decide whether to go back on, to go back to nortrip. To reset sleep cycle, or to go with naturals. Any advice welcome.

It seems that maybe the Orexin pathway masks other stuff going on in M.E. Officially it doesn't cause withdrawal but I feel that may be different with M.E. because there are abnormalities in the pathway.

It's concerning to experience this severe sleep disturbance again as I did when I first got sick, and to just have the rug pulled out from beneath me by the NHS.

Any tips or advice welcome in terms of any OTCs that can help tackle this! I've been l looking at which supplements may also target orexin/Hypocretin including theanine and GABA....
 
Mary

Mary

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SlamDancin said:
Hey Chris I don’t have a full explanation for ME relation to Orexin signaling, but the common Chinese herb for insomnia, Jujube (Ziziphus Spinosa), has Orexin antagonist and GABA-A agonist properties.

https://pubmed.ncbi.nlm.nih.gov/39934412/
Click to expand...

I've taken jujube or ziziphus spinosa products before and they do help me with sleep - they're one of the better ones. Unfortunately, like everything else, I rather quickly develop a tolerance for this herb - within 10 - 12 days - and then it stops working. This happens with any herb I take and some non-herbal products. So I now have 2 sets of herbs/other supps for sleep - I'll take one group for 10 - 12 days, and then switch to the other group, and go back and forth. Unfortunately no one herb by itself has been sufficient so it gets a little pricey but it's working generally. So this is what I'm taking:

Group 1: jujube/ziziphus combo product (e.g., shui de an), magnolia bark, lemon balm - and middle of the night a THC/CBD gummy as needed

Group 2: chamomile extract (standardized apigenin), Valerian/chamomile/hops, unisom (doxylamine succinate) (unisom is quite strong, I started with 1/4 tab and now take 1/2 - I develop a tolerance to this as well!)

I also take the following which help some, and I don't develop a tolerance for these:
l-theanine, n-acetyl-glucosamine, melatonin, 5-htp, niacin (600 mg. before bed and 300 mg. middle of the night), inositol, l-glycine

High cortisol at night can cause severe insomnia which none of the above will touch. Mine was quite high some 20 years ago and I was given Seriphos - which worked amazingly well to help normalize my cortisol levels. At times of stress I will use a low dose. The only way I know of to determine the proper dose is to experiment and as always, start low and go slow. It worked best for me when taken in the morning surprisingly enough. it didn't make me sleepy or tired, but calmed me down. When I took it at night it gave me a weird insomnia, hard to describe!

An Adrenal Stress Index Test is a saliva test which uses 4 samples taking during the day/evening so will let you know if you have a problem with high cortisol at night when it should be low. You're in the UK - I don't now what your testing is like there. In the U.S. we can order this test on-line and do it without a doctor's order. Most doctors only check morning cortisol levels. It's surprising to me that none of them seem to know about high nighttime cortisol!
 
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