Hi everyone,
Having recently been diagnosed with CH I have spent a lot of time doing research on this site and elsewhere.
Thanks to all the advice I have got my Imigran and now just waiting for my O2.
The thing is I have heard that Melatonin can be very helpful so I decided I would like to try it....... >:( It is not licensed in the UK so is unavailable in this country!!!
My parents live in france so my dad went to the pharmacist and they do it there but only 2mg ones and very expensive.
Just wondering if anybody else here in UK uses Melatonin and if so how do they get hold of it?
Thanks in advance
Chantal

Contact your most excellent support organization:

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Hi Chantal,

I use melatonin and live in the UK. I'm fortunate enough to have parents in Canada who send it to me, but if I run out, I buy it on Ebay. It's about £5 for a bottle, but of it works, it will be the best fiver you've spent in a while!

I buy 3mg tablets and take my doses dependant on how I am. My usual dose is 6mg, but I do take 9 if I'm having a really crap time.

Let us know how you get on!

Em
x

Yes you can get melatonin on prescription in the UK as an off list drug BUT.

You do need to talk with your consultant first and ask if you could try this out specifically for CH.

Only a consultant can authorize a GP to prescribe this. If you can get a prescription most UK pharmacies can get this drug in for you but you do need to allow 24 hours as it is not carried as a stock item except in some hospital pharmacies.

It is available in 2mg, 3mg and 5mg capsules; other doses are made up in hospital pharmacies.

I suggest also buying an NHS pre-payment certificate if your not eligible for free NHS prescriptions, saves a fortune if your living on triptains. :)

Thanks Katie that was interesting...
Do Drs know about this or not? My dr was adamant that you cant get it but actually said she wished she could as she believes in the benefit of it!
I think I might phone my neurologist next week and have a chat and see what he thinks.
Will keep you posted!!
Chantal

Your GP is right in so far as GP's cannot authorise and prescribe under current guidelines but they can if a consultant recommends the use of an off list drug in a specific case for a specific reason.
Some consultants are and if you have a good neurologist they should be aware and willing to read up further if they have not used this drug for CH before.

Give the neurologists secretary a call and ask if they will ask if its possible for you to try this drug.

It certainly has less side effects than many on prescription drugs and is less likely to interact unfavourably with other drugs you need to take.

Good luck.

Hey Chantal,

I live in London and get my Melatonin over the net as advised to by Em....
I get it from a site called Agestop.net
I can't say that it has stopped the attacks from happening but I'm certainly getting a better nights sleep and the attacks are generally far less painful than they were....(mine were always 8/9 now 5/7)

And you must definitely get yourself an NHS pre-payment card if your paying for your meds.....mines saved me an absolute fortune.....

Scott

Hi,

I live in the UK and I work in a pharmacy and as far as I am aware, you can buy it over the counter. its very expensive, but you can buy it over the counter. I will check this out, I am working tomorrow so will get back to this on wednesday with a possible price.

Stuart

I've never heard of it being available over the counter in the UK. I usually get a friend to bring it back from the US for me whenever he visits on business, as my personal trips are sadly curtailed due to lack of funds! But I also order it online from Inhome in Switzerland:

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Ironically, my latest order is stuck, as they're out of stock, but am assured it will be back shortly. They're normally very quick, and cheap too, although there is a minimum order of €40 plus €20 postage, but they stock quite a few other interesting products, so shouldn't be too difficult to make up the price.

The regulations are a maximum of 3 month's supply, and the tabs are 3mg, and 120 in a tub - so if you take 9mg a day, that's pretty much a tub a month.

Hello again,

my mistake, I looked it up and it is only available on prescription, our supplier gets it from america which is why the leaflet and packaging have no markings or context to uk healthcare. which confused me somewhat. but even on a private script its still quite pricey at ~£70 for 60 sometimes tha packs have a get 50% or 100% extra free so you can get more for your money but thats rare.

Stuart