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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Meds available in UK??
        
(Message started by: Brettsta on Sep 9^th, 2007, 4:00am)

Title: Meds available in UK??
Post by Brettsta on Sep 9^th, 2007, 4:00am

Hey everyone!

I'm new to this site, just signed up yesterday. Here's a little bout me, i'm 22 yrs old, male from England, a smoker, been suffering with clusters since i was 15 and was diagnosed 3 years ago. Am currently in what feels like my millionth cluster period lol and i have some questions! =D

I've been studying uponline for past few days (basically because i'm f'ing sick of the pain) and i see a lot of ppl trying a lot of different medications. But the majority of you are from the states, now can any of these meds be easily obtained in the UK?

What would be the first thing to try? (for me to ask my doctor about)

(...only thing i have tried other than otc painkillers are Zomig aka Zolmitriptan, which had no affect at all. And have had a small O2 tank a year or so ago that did nothing either... although it was not fitted with a non rebreather mask and only regulated up to 12lpm.)

Also i see ppl talking a lot about Coffee and energy drinks!!! Why is this? lol do they actually work??

Annnnd.. some people have found relief from sumatriptan... in the UK this is available of the counter... 2 50mg tablets for £7.99 (about $15 us) is this a lot of money for what they are and do they really help?

Sorry for such a long message but would like to hear some answers please, anything anyone can help me with would be really appreciated. =D

Take care guys!

Brettsta

Title: Re: Meds available in UK??
Post by Bob_Johnson on Sep 9^th, 2007, 10:57am

http://www.plainboard.com/ch/chtherapy.pdf

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
==========
While there are a few alternative approaches not mentioned here, this is the best current statement of treatments used by mainline physicians in the U.S. While brand names change as you go around the world, the generic names are constant and so you should not have any problems finding meds--assuming they have been approved for use in your country.

Suggest you make contact with the OUCH group in England:

http://www.ouchuk.org

Title: Re: Meds available in UK??
Post by michael on Sep 9^th, 2007, 6:06pm

Hi Brettsta.

Oxygen I believe is centrally funded in the uk and available through your gp.

Imigran radis tablets (sumatriptan) are available on prescription (I get 12 100mg tablets per prescription from my gp) although they are only really useful for shadowing. They take too long to work for CH, between 30 mins and an hour if they work at all.

Better to try imigran injections (also available on prescription). They come with an injector pen which makes them easy to use. They will take out a hit for me in 10 minutes every time.

You also need preventatives such as verapimil.

Keep reading and see your gp - he may need educating on CH. Insist on a referal to a neurologist.

By the way, although I haven't personally tried them, many here recommend energy drinks such as Red Bull. Any will do as long as they contain both caffiene and taurine. Chug straight down at the first hint of an attack.

Mike

Title: Re: Meds available in UK??
Post by Brettsta on Sep 10^th, 2007, 3:34am

Hey mike!

Thanks a lot for the reply to my topic, very informative and will deffinately go see my doctor and suggest some of this to him and ask to be referred to a neurologist.
Thanks again

p.s i tried the coffee trick yesterday, was drinkin a strong coffee every 2 or 3 hours and i recieved 1 mild attack. in comparisson to the 4-5 nasty attacks i've been getting everyday for the past 2 weeks almost. So maybe energy drinks could work too =D

Title: Re: Meds available in UK??
Post by Saffy on Sep 10^th, 2007, 5:36am

Hi Brettsta,

My Dr has just put me on Topamax which apears to be working, very early days though.

I had to see a neurologist first who actually prescribed it and told the Dr to give it to me!!!

Saffy

Title: Re: Meds available in UK??
Post by Brettsta on Sep 10^th, 2007, 5:40am

Hey saffy!

Thanx for the response =D
I have an appointment to see my doctor in an hours time so will see what he says, and am going to ask him to refer me to a neurologist.
I have been to a Neuro before but i went private with bupa...(quite expensive lol) so am really gunna push it on him!
Will be definately asking to have oxygen too... do you use oxygen? if so how do you get it? is it delivered or do you collect it from the pharmacy? :S

Thanks again!

Title: Re: Meds available in UK??
Post by Brettsta on Sep 10^th, 2007, 7:53am

Ok... update!!

Just got back from doctors. Told him what i suffer from which he should already know as my neurologist had sent him letters explaining my condition.... yadeeyada.... nope. He said to me yes but clusters are just a type of migraine aren't they... NO DOC! they're not!... oh... sorry he says...lol unbelievable. i then spent the next 50 mins with him explaining clusters, asked himto find the letter from my neurologist, which he did, and asked me what kind of medication i should take for this lol. (think i should become a doctor... loadsa money n u dont have to know too much about anything lol)

So... after all this and researching with him on his computer i now have 112 tabs of Verapamil 40 mg.

Now he has suggested i take 1 tablet, twice daily.... so total of 80mg daily. What do you think? Is this enough? Need 'professional advice' please lol

Thankyou in advance anyone who can help =D

Take care guys!!!

Dr Brettsta (lol)

Title: Re: Meds available in UK??
Post by michael on Sep 11^th, 2007, 6:11am

80mg does not seem anywhere near enough to me. Most on here that use it seem to take between 240mg and 960mg daily.

Verapimil is primarily a blood pressure pill that has been found to be useful for CH. However we tend to need a much higher dose.

Usually the dose is steadilly increased until a working level is found, but you need your heart checked as the dose gets higher cause it can slow the heartbeat and you can start fainting OR WORSE - so DO NOT alter your dose without seeing your doctor.

I did warn you that you are going to have to educate your doctor - you need to be armed with information before you go. Some doctors are so stubburn that it takes a neurologist letter to get what you need (and some of them can be just as clueless). They do not seem to understand how urgent pain relief is needed - probably cause they never see you in pain!

Cannot help you much with the oxygen issue. I believe the system has changed somewhat since I last used it. Im sure someone will be along soon who can help.

You need an abortive that works such as oxygen and imigran injections - plus a preventative like Verapimil at the right dose. There are also plenty other things to try - keep reading and learning.

PF wishes

Mike

Title: Re: Meds available in UK??
Post by davyp on Sep 11^th, 2007, 6:24am

Hi Brettsta,

80mg a day of verapamil is way to low to be of any good for CH, the usual starting dose is 240mg a day.
An ECG should also be carried out before starting on verapamil and then another should be done before each increase.

I would of thought that the neuro would have sorted out a plan of action for you but it doesn't look like that is the case, and i suspect that the neuro you saw was not a specialist in headaches.

The first line of attack i would suggest is O2 which is now supplied direct from the O2 company, all your GP has to do is fill in a HOOF (home oxygen order form) and fax it to the O2 supplier for your area, they will then contact you to arrange delivery.

If your GP also checks his BNF (the Dr`s prescribing bible) he will see that the only licensed treatment for CH is subcutaneous sumatriptan ( more commonly know in the UK as imigran injections).

It might be worth your while to give the OUCHuk helpline a ring on 01646651979, which is an answer phone that is staffed by sufferers, if you leave your details someone will give you a call back and answer any questions that you have and also give you advice on what to ask your DR for.

Hoping that you are PF

Dape

Title: Re: Meds available in UK??
Post by southwalessunshine on Sep 20^th, 2007, 4:58pm

Hi there from a fellow Uk Cher,
I too was alittle bewildered by reading the posts here. All the stuff seemed to be american and they seem so far ahead of us brits in dealing with CH. The key is too ask as many questions as possible if you see a post of interest to you and ask if other brits here have heard or tried of it. If you post a question asking for UK help one of the other more informes Chers will come along and help out. Don't forget to register with OUCH UK, they have come in very handy for me so far.
Right let's get to answering your questions
1)02, you NEED 15 lpm of 100% 02. You also NEED a non re breather mask and you NEED to breath it properly. My Neuro didn't even mention 02 to me, it took me gathering info here and taking it to my GP to get it. It does work if you take it properly. Once you have it at home, you need to read a document that explains how to take it properly. I was getting no success until Dennis gave me the link for this article and once I put it into practice, I got results. If dennis doesn't come along at some point with the link for you, PM me and I'll go searching for it for you and send it to you.
2)Red Bull na d2 Pro Plus are always on my person. I don't know why it works but it does and it's easy to keep handy. It has something to do with equal high amounts of caffeine and taurine. So make sure if you try the cheaper replica's that they have the same amounts of each as Red Bull. I buy ASDA own as it has the same quantities. It has to be ice cold though. If you're caught out with no meds try this, or lots of strong coffee. Some people here drink ice coffee too.
3)You can get sumatriptan from your doc. I too tried zomig with no success. Sumatriptan is much stronger and is pretty easy to get from your doc. I'm actually surprised that your doc hasn't given it to you seeing as you're actually diagnosed!
I also have Imigran injections aka Imitrex. This is the subcutanoeus version of sumatriptan. Very strong but aborts extremely quickly.
I have fought for everything I get meds wise and although i'm sure someone will be along with more experience than myself, if you need to ask anything just drop me a line.

Added- Michael is right about the sumatriptan really being good for shadowing or milder attacks. it sometimes takes up to an hour to kick in with me, so I take Imi when the beast hits.
Good luck x

Added (again)- I think you should get yourself armed properly prior to confronting your doc. I asked all the questions I needed answers to on this site and followed up the answers, printing every link and conversation of this site that applied. I also used OUCH UK as well. I included info on 02, prevents, abortives, the lot, then i saw my GP and handed over the lot, I went back a week later and got my 02 and another apt for the Neuro. When I go see the Neuro again. I'm gonna go armed again. We will always get fobbed off as docs don't tend to know much about CH, so we must inform them and let them know we will not be fobbed off. If you go see your doc/neuro with printed info (try adding quotes from Dr Goadsby et al)and a list of questions and well informed demands, how can they not give you what is needed?