OUCH(UK) Organisation for the Understanding of Cluster Headache

Donate

Advice Line

0800 6696 824

Cluster headache advances in British Medical Journal

7 posts / 0 new
Last post
#1 Wed, 13/04/2022 - 21:19
CarrieF
Offline
Last seen: 7 months 4 weeks ago
Joined: 24/07/2019 - 11:06

Cluster headache advances in British Medical Journal

I'm so excited to see a good article on cluster headache in the BMJ.
This article has lots of info on treatments too to educate our Docs. 

Wed, 13/04/2022 - 23:02
PHurst
Offline
Last seen: 6 months 1 week ago
Joined: 22/09/2017 - 22:46

Just read this. The article mentions 10mg of Melatonin as a treatment for use during a cluster. Does anyone use this? How do you get it as it's not readily available in the UK?

Thu, 14/04/2022 - 21:39 (Reply to #2)
CarrieF
Offline
Last seen: 7 months 4 weeks ago
Joined: 24/07/2019 - 11:06

 It's definitely available on prescription presuming your gp is willing to prescribe for cluster. You could go armed with article to ask for some! 

Thu, 14/04/2022 - 22:55
PHurst
Offline
Last seen: 6 months 1 week ago
Joined: 22/09/2017 - 22:46

I think it needs to be a private prescription but I will try. 

Tue, 10/05/2022 - 21:59
Val
Offline
Last seen: 23 hours 10 min ago
Joined: 21/03/2012 - 15:16

P Hurst you could try asking your headache neuro to prescribe it for you, if you have no luck with your GP. 

Val. 

Sat, 21/05/2022 - 20:02 (Reply to #5)
PHurst
Offline
Last seen: 6 months 1 week ago
Joined: 22/09/2017 - 22:46

After some research and with some help from my GP I have some more information on this topic now which I'd like to share.
 

There are two papers:

1: https://selondonccg.nhs.uk/wp-content/uploads/dlm_uploads/2021/09/Recomm...

2: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5012937/pdf/nihms785253.pdf

The paper in the first link is from an NHS prescribing committee and references the second link which is a study co-authored by Prof. Peter Goadsby from 2016  on the use of melatonin in primary headache disorders. It appears to suggest that a dose of 10 mg taken at night might prevent episodic cluster headaches. What is not clear is whether the melatonin is in the instant release or delayed release form. 
I have now got guidance which shows that the melatonin should be 'instant release' and that it should only be prescribed after a consultation with a neurologist. I'm now on a waiting list for that. 
As my latest episode of CH has now ended it's not urgent for me right now but I'm surprised there is not more call for this as melatonin is well tolerated and is used in circadian rhythm sleep disorders. It's an OTC medicine in the USA although the suggested dose is higher than is usually given. I will share more updates when I have them.

 

Fri, 10/06/2022 - 12:02
JohnnyB915
Offline
Last seen: 5 months 1 week ago
Joined: 18/12/2021 - 23:12

I purchase melatonin from the USA - it is relatively cheap but only use reputable sites.  I was also advised to use this by my Consultant in February.

For me, it acts like a knock out drop and I get very sleepy on it.  It clearly interacts with the good old serotonin pathways that are at the core of CH.

Mark

CH sufferer for 30 years

Login to add comments

Share This

© OUCH(uk) 2022 | email: info@ouchuk.org
Registered Charity No. 1091919 | Registered in England Company No. 04339368