I'm in the UK and I'm trying to get the right meds. I'm episodic but was 'diagnosed' at the end of my first cycle about 18 months ago. On the 22nd Feb, they came back worse than before and since then I've been trying to get help through the NHS.

Despite telling Docs I'm having three attacks in every 24 hours, they keep trying to give me a day or two's medication and then not helpful medication and not even on repeat.

Through info and replies on this site, I put together what I wanted prescribed and so went today armed with the info. (a prednisone taper, Verapamil and O2). My GP said he cannot prescribe O2 and that it was something I had to discuss with the neurologist. The only problem is that they can't give me any idea how long it will take to get in to see one and I'm worried my cycle will have passed before then. He wouldn't even prescribe a preventative so all I got out of the appointment was inject-able Sumatriptan instead of the ineffective nasal spray I have now.

I gave him a pain diary and pointed out that I'm having 3 or 4 attacks in every 24 hour period so with these meds, can only treat 2 of those 4. It seems cruel and inhumane to say here's treatment (and not even good treatment) for 2 of your attacks and you'll just have to suffer the other ones with no help at all and for an immeasurable period of time. They're also only giving two days treatment at a time so I'm backwards and forwards to the chemist. My mobility is bad so I'm having to take a taxi at £7.00 a time.

I'm starting to wonder if I should just go to A&E next time I have an attack and see if I can access a neurologist that way or at least someone who can prescribe what I need. During the worst attacks I often consider calling an ambulance but then think 'what if someone who's dying needs it'?

I just don't know what to do for the best

Give the folks at the OUCH-UK Helpline a call.  They may be able to help.  The link is START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and the Helpline number is 01646 651 979.

I've also attached a copy of the NHS Home Oxygen Order Form (HOOF) filled out with reference to cluster headache.  Fill out as much as you can then take it to your primary care physician.  If you look at closely, a GP should be able to prescribe oxygen therapy.

Several CH'ers there in the UK have reported success in controlling their CH taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3.

I suspect you'll start receiving help from CH'ers there in the UK shortly.

Take care and please keep us posted... 

V/R, Batch

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I understand that you have a right to be referred directly to a headche clinic, by-passing your local docs.

I was told this information came from your excellent support group and so it would be wise to contact them and find out if true, how to get a referral, etc.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Thank you batch. I've just joined OUCHUK and registered for the forum. I'll give them a call at a more sociable time tomorrow.

I'm even more annoyed with my GP now. When he gave me a prescription for Sumatriptan injections I looked at it and remarked it was for only two injections and not on repeat but he insisted it was 20 injections. My brother went to collect the prescription for me and came back with guess what, two injections. What part of 3-4 attacks every day is hard for these Doctors to understand!

Give the OUCH(UK) Helpline a call anytime - leave a landline number and somebody will call you back.

Don't know where you are in the UK but if you're interested, we are holding a regional meeting in Cambridge on the 11th March - see this link for info
      START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Rod            

hello Guitarman

I don't want to worry you  BUT it took me six months to get an appointment with a Neuro by which time I was out of cycle . And that includes an NHS choose and book system f*&**%$ up where I ended up in a ME clinic ??? at least the person I saw there got me booked in for an MRI scan.

Any how have you got a prepayment card for your prescriptions ? I think my last one cost £28 for three months , could be worth a look.

Have a look at the Imitrex tip ,Link to the left <-, it will make your two jabs last a bit longer.

The london headache clinic could be worth looking in to but I think thay charge about £100 for a first appointement.

Any how good luck and God bless

Nigel

Hi Headache Boy UK

Even though my surgery haven't sorted my choose and book letter yet, I called the hospital and found that I'll be looking at late April for an appointment so that could be worse. I've put a complaint in with the Practice Manager and with the PCT now and I'm going to see a different GP tomorrow although I wonder if I've been blacklisted now because I wouldn't put up and shut up  ;D It's got to be worth trying.

I was just about to write "I read the imitrex but I think my auto-injector may be different", when my long suffering OH came back with my prescription and this one is different. It is in a groovy plastic case with the injector and what looks like two viles joined together.

I hope your GP at least gave you verapamil to get started on.  My GP is the one who 1st prescribed me this.  It took about 2 weeks to start working, but after that my cycle ended, and I went through a 2-year remission period compared to the 1 year that had been my pattern for years. 

I understand your frustration with doctors.  I think most of us can relate.  It seems like sometimes they just don't get it or understand what we are going through.  Just keep pressing; that's what I do, and eventually something good comes about. 

Have you tried calling around to different neurologists in your area and explaining to them your headaches and that you need an appointment ASAP?  I know it took me like 2 months to get my 1st appointment, but you might get lucky and find an office who will schedule you quick.  I thought about going to the ER when nothing was working for me and asking them to have a neurologist see me.  I don't know if that would work or not, but they more than likely have a neurologist staffed at the hospital.

Okay, well that is my 2 cents.  Other than that, listen to the good people on this board.  They sure have helped me out a great deal.

I wish you the best.   

Thank you Billie. No my GP didn't even give me Verapamil and said he wanted to treat the pain first. Being tired and down-trodden I let it slide but now I'm back up and fighting (thanks to support here and the OUCH forum & helpline). I did check three hospitals in reasonable travelling distance and April 18th was the soonest I could find. I'm back in at the GP's for a second opinion in the morning so I'm going to try again for Verapamil and O2.

The Sumatriptan injector I have now is the type you can take apart. I'm consistently having four attacks in every 24 hours so I'm going to try half of the 6mg injection for each attack. Hopefully this will carry me through until I can get some other meds on board.

It would be good to know if anyone has had success with the ER route.

So, we know that your GP is inadequate to the cause--but until you can get referred to a headache clinic (hope you contacted OUCH-UK) print out the PDF file, below, and give to your GP.

At the very least, it's a medical source of information which he will recognize and the evaluations of meds may give him some push to get you on Verapamil.

Print out this article in addition to the PDF file.
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Headache. 2004 Nov;44(10):1013-8.   


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).

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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.

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Hi Bob. We share the same fantastic Surname!

I did call the OUCH helpline and they armed me with the relevant info. I have an appointment now to see a neurologist in late April. He may not be a CH friendly one, but worth a try.

I have some better news. I saw another GP this morning who tried to call the neurologist I'm due to see in April to ask if he would agree with him prescribing a Prednisone taper, Verapamil & O2). I think due to my complaining, there's a fair chance he was pre-warned about my visit as he mentioned the meds before I did. It's well worth reading up on here & OUCH and taking advice because he was clearly impressed that I'd made an effort to help myself as it were. If the neuro doesn't agree with him prescribing, at least I will be satisfied that this GP made an effort to get me what I want and need. I left all of the recommended documents (from OUCH) with him also and he's going to call me back later to let me know the outcome. While I was there, he checked my BP and found it to be high (enough for him to ask me to come back tomorrow to have it checked again). I explained that dealing with these attacks and the fear of them without meds and with the stress of trying to obtain treatment was the likely cause.   

Pleased for you that some helpful action is in process!

B

Hi Guitarman

I'm from the UK too and was first diagnosed three years ago, when my first episode started.  It came back a few weeks ago. 

My experience with GP's first time round was not positive, and only improved once their views were trumped by the expertise of a genuine expert in headache.  Despite not getting a referral from the GP I went to the City of London Migraine Clinic and saw Professor Blau (author of the article referenced earlier).  The clinic is free although they do ask for a donation - I think I gave £100 but if you can't afford that they would still see you.  You don't need a referral.  It was worth every penny because Prof Blau sent me and my GP a letter which outlined exactly what the condition is and what treatment I should be given. 

This time round I referred to the letter on file and the GP gave me exactly what I needed with no argument whatsoever.  All the drugs have been put on repeat prescription.  I'm not sure where in the UK you are but a visit to the London clinic would be worth the effort - migraineclinic org uk (it wouldn't let me send the link!)

As to the injections, I usually use about 1/3rd of the injection each time and that works, albeit after a few more minutes.  A couple of times I've needed 2/3rds but that's not often. A benefit is that I don't get all the weird side effects.  I'm on 160mg of Varapamil three times a day, and about three weeks in I'm pretty much pain free.  I've just ordered the D3 vitamins and will be starting that soon.

This forum is terrific and contains more expertise on CH than the population of UK GP's put together!  Good luck.

Paul

Hi Paul. I'm in East Yorkshire and travel that far is problematic due to other health conditions. I have made some further progress though...

My GP spoke to the Neuro who is going to see me sooner. He said he wanted to see me before Verapamil and O2 were prescribed but he did agree to a pednisone taper which I started this afternoon. Hopefully now between that and eking out my Sumatriptan injections for my four regular attacks and the more urgent appointment, I'm on my way to better managing the beast!

Glad to here your making some progress dude .

Make sure the neuro listens to you and doesn't talk over you , if you are out of cycle when you finally get to see him , tell him how you were in cycle as well as now.

It's been two years since my last (which was also my first) cycle ended and I'm no further along than I was . my neuro asked me how I was feeling and I told him that I was out of cycle but still getting constant shadows he then talked all over me as I was describing them , he then muttered some thing about sunct and said I could try gabapentin when I needed it and kicked me out the door . Whole process about 3 1/2 mins .

So now I'm still getting shadows 6 or 8 times a day with varying degrees of pain (no more than a k5) which I keep under control with copious amounts of red bull, well asda blue charge cos its a fifth of the price, and when the next cycle comes along it's back to square one .

The difference this time will be that I now have more knowledge on CH than my GP and a wealth of information on this site to draw on.

Crikeys I'm rambling on ....sorry dude

Good luck with your appointments

God bless

Nigel