Hi, first post on this site and find the site very helpful and good to see the information that people are sharing.  It really is reassuring to hear other peoples stories and realise that sufferers are not alone.  I know of no one else who suffers these.

My question is, for sufferers in the Uk.  Can people share their experience when visiting their GP.  I have had CH for nearly 20 years and usually get one bout a year (one has just started) but the times change every year.  When visiting a GP I get the impression that they do not know much if anything about it which would explain why they are prescribing me painkillers and prozac or equilivent.  I have had a MRI scan and the original diagnosis by a neurology specialist was that my brain swells and touches my skull causing the headaches but that was a best guess by their own admission.  I do not now take any medication and just ride through the headaches until the episode has completed.  Before researching myself the only indication of cluster headaches was when I was at the doctors surgery and saw the term on their pc.  It feels odd to go to a doctor and actually know more than them on the subject.  Again, I am looking for Uk experiences with their GP to try and locate some medical body who knows more about this.

Many thanks.
Justin

Start with your excellent support group: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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OUCHUK list of GB resources and CH support groups in other countries. (5/10)

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Bits and pieces from several messages which may give you some leads...

Message: "Dyno", Tenby, Wales, UK, Aug 9, '09:
[Bob-excludes Wales per Dyno]
looking at their website it looks like a better alternative  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Why not ask to see the top man in the country - Dr. Manjit Matharu at UCL. Under Patient Choice - look at the link below - you have the right to choose who you see.

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and this - copied from the OUCH(UK) website

Quote:

You can ask your GP to refer you to one of our hospitals for treatment
Central to the government’s healthcare policy is that patients should be given the opportunity to be more involved in making decisions about their healthcare. If you and your GP agree that you need to be referred to see a specialist, then you have a choice of at least four local hospitals or clinics. Since May 2006, that choice has been extended. You can now also choose to go to any Foundation Trust in the country, including UCLH. Whether you’re from Cornwall or Camden, as a patient you now have the right to choose UCLH. You can ask your GP to refer you to one of our hospitals for treatment.

[Source: UCL website]
===============================

City of London Migraine Clinic [and other types]  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Welcome to the board Justin! I'm from the other side of the pond so no help to you there. Glad you joined the gang here! :)

Joe

thanks guys.

Hi. My first post here too, even though I've been lurking around for about a year..
I went five years undiagnosed, with at least four doctors telling me I had a sinus infection. I only got referred to hospital by a locum when she read that I'd been coming back for the same thing for years. She sent me to ear, nose and throat at the hospital for sinus scans and a camera up my nose. They said I'd never had a sinus infection, but had I heard of cluster headaches? No, I hadn't, but after a quick read about it there was no doubt in my mind.
The neurology appointment took months to come through, but before it had, I managed to persuade the same GP to prescribe me some Imtrex to try, based on all of the reading I'd done on this site and others.
Neurology told me it was a textbook case of CH, he couldn't believe nobody had spotted it before. He wrote to my GP with recommendations for Verapamil and Sumatriptan pills and jabs, and to contact him again if it wasn't working for me. Since then, it hasn't been too bad, both of us know lots more about CH, I've got a repeat prescription for the pills and injections and don't have to make a fuss when I need more.
It took long enough to find a GP that would listen, but this one will listen to everything, I even told her that I was considering taking mushrooms.. She said "They're only mushrooms, be sensible and let me know how you get on." I'm going back soon to tell her they really work! Two cups of mushroom tea, and no headaches for a month in mid cycle.
I'm not sure if any of that helps, I think you've just got to keep going back till you find someone who listens. Good luck.
Dodge

Bob was spot on referring you to Dr Matharu!  I met him last summer at the OUCH convention in Atlanta.  He is very knowledgeable about CH and very compassionate in his approach as well.  He will take the time to teach you how to deal with it.  In the mean time, spend a lot of time on here reading.  You will find more information on this site than 99% of the Drs have at their disposal.  You will find the odd poster at times, but you'll also find more knowledgeable types setting them straight most of the time. 

Bear in mind that what works for one may not work for another, so you will need to keep a thorough diary of your HA's so you can talk intelligently with your Dr when you get him.  I strongly suggest you ask for Oxygen, and at the highest flow levels you can get.  Personally, I would try for at least 25 lpm, although some get relief at 15.  A very few at lower flow rates, but they are the exception, not the rule.  Take a good look at the "oxygen info" button in yellow to the left of the screen.  Print out pertinent information and take it with you when you see the Dr.

Furthermore, as you are doing  your reading and research feel free to ask questions.  No honest question is stupid, although you may get the odd stupid answer. :D

Jerry

Hi Justin,

I have also been a sufferer for over 20 years. Got diagnosed about 5 years after my first bout! I have always been on Verapamil which has always worked well until a heart condition was found. I then went down the route of O2 and so glad I did, it works within 5-10 minutes for me, especially if I get on it straight away. I just downloaded the HOOF form on the English OUCH website and took it into my GP, it is half filled out already, so not much for the GP to add, fortunately I do have a very good doctor. I also asked to be referred to Dr Matharu.............only took 10 months to see him!!!!! So be prepared to wait quite a while.

Anything else you need, don't be afraid to ask.

Caron

Yo Dude

I've only been suffering for just over a year now ,I'm obviously one of the lucky ones as I had a diagnosis in a few weeks , although my GP did put me on migraine meds to start off with but moved on to Imigran injections and verapamil after I went back and said the migraine stuff did nothing. Had a bad time on verapamil , it really didn't agree with me but the imigran works a treat.

The cycle lasted about 4 months but I was only getting 4-5 hits a week most of the time altho it did have a peek with 2-3 a day.

In all this I was referred to a neurologist at Queens hospital in Romford, about 6 months till his first available appointment . so using the nhs choose and book system my wife managed to get a cancellation. Only trouble with that is that it turns out that the system sees it only as a cancellation for the neurology department and I ended up attending a ME clinic (bit embarrassing really but they were very understanding and booked me in for an MRI scan and a new appointment for a neurologist) so please be aware of the limitations of the NHS choose and book system.

any how that's enough of my ramblings. Hope you have more luck .

God bless

Nigel

Dr Mathuru is extremely busy, so I'm not surprised it took quite a while to see him.  If I was in the UK though I would do everything I could to be under his care.

Jerry

JustinTracey wrote on Oct 27^th, 2010 at 6:10am:

Hi, first post on this site and find the site very helpful and good to see the information that people are sharing.  It really is reassuring to hear other peoples stories and realise that sufferers are not alone.  I know of no one else who suffers these. My question is, for sufferers in the Uk.  Can people share their experience when visiting their GP.  I have had CH for nearly 20 years and usually get one bout a year (one has just started) but the times change every year.  When visiting a GP I get the impression that they do not know much if anything about it which would explain why they are prescribing me painkillers and prozac or equilivent.  I have had a MRI scan and the original diagnosis by a neurology specialist was that my brain swells and touches my skull causing the headaches but that was a best guess by their own admission.  I do not now take any medication and just ride through the headaches until the episode has completed.  Before researching myself the only indication of cluster headaches was when I was at the doctors surgery and saw the term on their pc.  It feels odd to go to a doctor and actually know more than them on the subject.  Again, I am looking for Uk experiences with their GP to try and locate some medical body who knows more about this. Many thanks. Justin

Similar situation for me.  I was only diagnosed towards the end of my last cycle, but I've been an episodic sufferer for about 10-12 years.

I'd been given sanomigran, told to change my eating habits (does anyone else get really annoyed when friends suggest this?  I know they're just trying to help but it just gets to me and I find myself "biting" at them before I can stop myself, and then having to apologise afterwards), and eventually I discovered the term Cluster Headache on a website and realised that it was my symptoms being described.

I spoke to my doctor, who had to look it up, who then referred me to a neurologist who booked me in for an MRI and eventually confirmed it was CH but by then the cycle was coming to an end, so this current bout that's just started for me a few weeks ago is the first time I've had actual CH medication rather than headache pills or migraine pills.

Thanks for all the repies, it really helps.  I have advanced a little now and was prescribed Sumatriptan nasal spray but unfortunately it only made me throw up.  The doctor did go through a range of treatment most of which has been mentioned on this thread.  I intend to go back to my doctor to ask for o2 as I found trying to do a deep breathing reigme when the CH's would start could limit them to around 1 hour instead of the 2/3 hours.  It is early doors but it does seem that o2 would be a benefit.  As I said thanks for all the replies.

Do push hard for the oxygen. 32 years of the beast for me and nothing holds a candle to the speed, ease of use, lack of side effects and low cost of oxygen. Untreated my attacks run about 90 minutes, with several hours of "headache hang over." With oxygen I abort in 6-8 minutes. Praying you get some relief soon.

Joe

I had my first ever attack at the end of august and they continued every day for 2 months, up to 3 times a day at it's peak.

My GP knew very little about CH and I had to suggest it as a possibility after stumbling across the term for the first time on the NHS direct site. He rather flippantly bunched it in with tension headaches and other randomly occurring head aches and therefore prescribed me amitriptyline. I eventually got some imigran nasal sprays (as a bit of a trial methinks!) and after they worked wonders I was given propanalol (old migraine treatment) and the CH eventually went away. Probably on it's own!

Last time I saw my GP a few months ago he referred me to a neurologist at the local hospital and told me he wouldn't prescribe me anything else and leave it to the specialist whom I see next week. I am now looking forward to seeing just how special he is!  ;D

As a long term sufferer of episodics, and having had many battles with the vagaries of GPs and the NHS, I'll chuck in my observations!

First. Push your GP for a GOOD neuro consult. Even with it, they'll be reluctant to prescribe. Get Institute of Neurology in London or (as others have said) Manjit.

Second. When you go to your GP, amass as much info as you can (in printed form) and take it with you.  I did this years ago - initially he waved his hand and said: "all anecdotal data" so I took some pleasure in asking if he felt that was true of NHS info, IoN info and Lancet articles! He then took some notice.

You will need to overcome a marked reluctance to prescribe Sumatriptan (particularly the jabs which are the best answer) due, I suspect, to their expense. Also, most GPs don't seem to be able to grasp the fact that you can experience anything up to (my worst ever episode) 7 attacks in 24 hours! That makes a mockery of a prescription for 2 X 2 injections! Also, if on repeat prescription, they'll get heated when you keep putting them in.

All in all, something of a battle. You need to educate your GP - at least get him researching the condition. You need to try and get him to understand the particular needs when in cycle and why.

If you can achieve this, you'll be on the way. However, as others have said before, my best advice once you get Sumatriptan prescribed would be to stockpile. Put in prescriptions year round (when out of episode) and keep them. Ignore best before dates. Just stockpile - then you might stand a chance.

Good luck.

Chris.

Hi Justin

I have suffered for years (15+), was finally diagnosed last year after visiting a neuro.
I'm now on verapamil as a preventative and have sumatriptan tablets as an abortive medication.

For the first 2 visits to the neuro I made the huge mistake of not researching clusters and what treatments are available. (prescriptive and alternative)
Neuro mentioned oxygen but stated it was expensive and we need to try other treatments first.
However now I am armed with the extensive knowledge I have gained from here I will be asking for O2!!! and sumatriptan injections
My current treatment plan is working for me at the moment but I am looking to tweek it so I control the clusters instead them controlling me
Welcome to the site, it's comforting knowing your not alone and that there are others that know exactly how you feel.
Take care
Sue  :)

Hi Justin

My experience of our NHS ain't been the best, but i have had the odd good doc, who has actually gone out of their way to help.

The GP's I've dealt with recently have been loath to change my medication, in any way, even though I was in the middle of my worst cycle ever (ended up lasting over 12 weeks), I was having regular KIP 9 - 10 attcks up to 7 or 8 daily. The better GP did make me a referal back to the Neuro, and even chased it, but i'll be attending that next Friday, five weeks after the episode ended.
I notice Clusterbuck mentioned Sumatriptan Injections. I gotta say, they've been my best friend for many years. Not often have they failed to take effect. Their only let down has been the limit of only bein able to take 2 in 24 hours. I have recently had fun with one GP though. When I asked for a repeat she basically said, "Have they not gone yet?..... These are £42 each you know!!!" I somehow managed not to swear at her!
Follow all of the advice you've had. Try to convince your GP to let you try the injections. Get them to refer you to the best Neuro / Headache specilaist possible n take on some of what you've been reading. If all else fails, maybe try one of the clusterbusters 'homeopathic' remedies.
Bottom line is, though the NHS often try to turn a blind eye, as sufferers, we do have some options, as long as we're willing to put up a fight.

All the best

Andrew

[quote author=59585F43485F4F5844414944434A2D0 link=1288174232/15#15 date=1298468741] I have recently had fun with one GP though. When I asked for a repeat she basically said, "Have they not gone yet?..... These are £42 each you know!!!" I somehow managed not to swear at her!

Now why does that not surprise me!!!

Justin educate yourself as much as possible, print off the info Bob posts re CH & medication options and drop it into your surgery before your next appointment (advice this site gave me!) for your GP to read
Take care
Sue

I think most of the people on here have said what needs to be said really. It is a struggle, and it is very sad to see people's stories about Drs who do not understand. Even a girl at my work suffers chronic migraine and I give her my sympathy, even when others won't and I am 'worse'. Pain is pain...

For me it did take a while to be referred to Dr Matharu, but this was because I already had a neuro who knew his stuff on CH, but he wanted Dr Matharu to see me and study my head (I have a mixture of probs as well as CH and my pain is out of control).

I just could not bear to wait to see him because the NHS list is so long (and I understand why this is) I have gone private and paid and booked this week. With my family's help I will be travelling to seeing Dr Matharu next month.

I am counting down the days...

PFDAN all x

Hi Justin,
Have just been diagnosed CH but this took 10 years of being misdiagnosed as sinus infections, migraines, hormonal imbalance etc etc. Finally got to see a new Dr at our surgery who immediatley knew what it was and couldn't understand why it had been missed. Now on sumatriptan which works really well and waiting for and appointment with ENT,  MRI and CT scans before they will prescribe anything else - gonna keep insisting they give me oxygen. Good luck x x

Do insist on oxygen and make sure you're also on a preventive too, something like verapamil, lithium or topomax as a CH prevented is a lot better than getting one you abort quickly.

oxyrunner wrote on Feb 26^th, 2011 at 3:28am:

Hi Justin, Have just been diagnosed CH but this took 10 years of being misdiagnosed as sinus infections, migraines, hormonal imbalance etc etc. Finally got to see a new Dr at our surgery who immediatley knew what it was and couldn't understand why it had been missed. Now on sumatriptan which works really well and waiting for and appointment with ENT,  MRI and CT scans before they will prescribe anything else - gonna keep insisting they give me oxygen. Good luck x x

Hi Oxyrunner
Just wondering are you taking the sumatriptan as an abortive medication or are you taking it regularly (ie every day)?
I can cause headaches (as mad as that sounds) if you take it too often.
When I 1st saw the neurologist she withdrew all my medication, the GP had prescribed sumatriptan but I was using masses, no meds for 6 months (only aspirin!)
i am now on verapamil and have the sumatriptan as the abortive treatment. I have to say I am PF at the moment and the world seems a fab place again  :) :)
This site is so good for support and info, my safe place to off load  :)

Hey Oxy welcome to the board.

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If you haven't already done so, read this link. It shows you how to CORRECTLY  use oxygen which is critical to its success. It also has some supporting documents you can take to your doc to justify the use of high flow 02 to abort these damned things.

And what Mike said. Verapamil is the more common prevent used around here, at doses higher then most docs are used to. I stole this from one of Bob Johnson's posts. He's the boards resident research man. A long read but this med has been a Godsend to many.

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

Welcome to the board, knowledge is power with this ailment. An educated CH'er hurts a lot less! ;)

Joe

Thanks for the advise. I have started taking half a sumatriptan instead of the full dose because I thought it was causing additional "annoying" headaches. Am in week 4 of my cycle, having 3 a day and think the CH are beginning to weaken and become shorter in duration, so Im hoping the end is in site.
I run every morning at 6-30am and this so far appears to have stopped the early morning demon, I do wonder if it would reappear if I didnt run (not sure I want to chance it tho)
Reading and learning all the time, any advise greatly welcome  :D

Andy T wrote on Feb 23^rd, 2011 at 8:45am:

The GP's I've dealt with recently have been loath to change my medication,

Hi Andrew,
Do you think it is anything to do with the fact that your meds come out of their budget?

I don't like being cynical so can someone please set me straight here?

Gary

Hi my GP referred me to a neurologist lastyear thats when i was diagnosed with chronic clusterheadaches i get the greater occipital nerve block done every 3 month and got oxygen home with me and got the sumatriptan injection it helps alot :D my gp does not know anything about ch i had to tell him:D but he has looked up on it

H i there. Im from the UK and had my first CH about 5 years ago. was told by my gp it was a migraine so was given migraleve. dont remember if that worked but havent had a CH until 2 weeks ago when they started. thought it was a migraine, then saw the doc whosaid they are CHs. altho the last few nights havent been as bad as they were i am hoping im coming to the end of my cycle. all the rocking and pacing and pullin my haor and lack of sleep is really taking its toll. just want this beast to go away and die. even when my gp said i have CHs she didnt give me any info on it. i dont think they know much tbh

Hi Mate,

Its good that your GP is at least going down the triptan route.
Nasal sprays are no good for ch as they can take 15 mins to kick in.
you need the injections -

Tell your GP to look in his BNF, its a green book that will be sat on his desk and is the doctors "prescription bible".

The ONLY listed treatment for CH is SUMITRIPTAN INJECTIONS.
He really cant refuse you them once he has read this ..

if your any where near liverpool or manchester area then ask to be referred to DR N.Silver .
He is a consultant neurologist who specialises in CH and works closely with proffessor goadsby who is the leading authority on CH.

If he sees the words cluster headache on a doctors referral then he will see you within 2 weeks. this man understands our pain !!

Hope this helps a bit- its a pain in the @ss getting the right support but once you have it things are a bit easier.

you will probly find a bit of resistance from your gp surgery when you come back with a prescription for 10 boxes of imigran, because thats about £1500 worth .. and i have that weekly lol ..

I was once told that i was blowing their prescription budget out of the water. . . but a quick call to DR Silver, and a resulting call from him to my GP soon put them in their place and now they give me what i want , when i want it  ;D

best wishes, let me know if i can help more

chops

Hi
I have finally received my sumatriptan injections after a right mither... but at least I now have the jab, my next battle is for O2 and I will win it this time!!!
O2 was mentioned at my last neuro apt in the same breath as "well it is expensive" !
I am far more educated in the treatments appropriate for this debilitating condition and will be stating my case for O2!!!
Take care
Suzie