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Cluster headache advances in British Medical Journal

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#1 Wed, 13/04/2022 - 21:19
CarrieF
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Last seen: 1 year 11 months 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
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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
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Last seen: 1 year 11 months 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
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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
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Last seen: 1 month 1 week 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
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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
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Last seen: 1 year 8 months 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

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