I have been a non-contributing visitor to this board since my first episode, which was about three years ago.  There is no doubt whatsoever that I benefited from this site in 2009, and now the wretched headaches are back I thought I would impart back to the board my experience – it may help someone else.  Apologies for the length of post, it’s a bit of a story.

I had never heard of cluster headaches before 2009 – I was 37 then and I am male.  My first memory of the onset were odd pains which came on immediately after having a beer (after playing football, or soccer as you may call it!).  Very weird.  The pains got progressively worse, and I stopped drinking, yet the pains continued, to the point where they became crippling – I don’t need to describe them to you all, but the standard symptoms of agitation, tearing, blocked nose, eye ball which feels like it’s being ripped out, etc. Always on the right hand side. It was pretty scary (terrifying), and first thoughts jumped to the worst.  Afterwards I'd wonder how there wasn't damage after such ferocious pain.

I got onto the internet and started researching, and quite quickly discovered cluster headaches and recognised the symptoms.  Armed with a print out from my research I went to the GP (doctor), who was spectacularly unimpressive.  I asked for a referral to a specialist, and instead got oral sumatriptan, which of course didn't work.  The headaches were getting progressively worse, and in the end I demanded and was given Imigran (Imitrex) injections, which are superb.  I did discover though that I started to get more than two headaches a day, and the ones where I couldn’t use an injection were terrible.  So much so I couldn’t be seen by my wife and children.

The continuing research online led me to the City of London Migraine Clinic (now the National Migraine Centre), where I saw Professor Blau – an expert on headache with a particular interest in cluster headache.  He was wonderful, and provided me with a letter which was sent to the GP which outlined in detail my condition, and specified the treatment I should be provided with.  This included Verapamil.  I was now two months into the episode and the headaches had started to reduce in intensity and in the end they disappeared after about 10 weeks.  I quickly put them out of my mind and got on with my life.  I have since learnt that Professor Blau has passed away, which is a very great shame.

Then two weeks ago I had a dream (and this is absolutely the truth) where someone was drilling my head with an electric drill.  I woke up and bang, shocking headache with all the symptoms from before.  I couldn’t believe it, having naively thought I’d seen the last of them – I was wrong.  I had no drugs of course and had a very bad experience.  Next day I got an appointment with the GP (a different one) and happily discovered Prof Blau’s letter was still on file.  I got hold of the injections and also was prescribed 80mg Verapamil * 3 times a day.  The headaches progressively worsened over the next few days, and again I was having to take one or two on the chin because of the two injection limit.  The Varapamil seemed to have no impact.  I then read a tip on the website about rationing the injections by taking them to bits and self injecting a smaller amount – this works and has transformed my life.  I never get more than four headaches, and I can now effectively deal with them using about one third of a vial each time.  It does take a few more minutes to go, but I can live with that.  The other bonus is that the smaller dose does not cause the side effects – tightness of throat and chest, tingling, etc.  This is absolutely worth trying.

Another thing I’ve done, again based on reading this site, is ask for the Verapamil dose to be increased to 3 * 160mg.  This has certainly had a positive impact, and I am now in the position of having no major headaches for a couple of days, instead what seem to be called “shadows” which never actually manifest into serious pain.  Again I can live with that.

I have read a lot of stories on here which I know are so much worse than mine, and my heart sincerely goes out to you as I have no idea how I would cope if it were worse.  Isn’t the internet and communities such as this a wonderful thing?  I am convinced I would still be in the dark without the internet.  I am lucky that I discovered the problem early and have access to the drugs without question – the GP has given me sufficient injections every time I ask for them, and indeed increased the verapamil dose at my request.

My advice to anyone who has just encountered this curse – do research, research, research, learn about the options then don’t sit passively back nodding at the doctors who often don’t know about the details of rare conditions like this – take control and demand the treatment you need.  I know that’s easier said than done, and I am fortunate that I live in the UK and am under a doctor who will prescribe me the necessary drugs in the quantities I need, but I am a firm believer that having knowledge of a condition, taking control and not being passive can only help.

All the best, and thank you to everyone who has contributed to this community and helped the likes of me over the years.

Paul

Thanks for sharing your story. It recaps the experience of so many of us.

Consider printing these two items and tuck them away in case you have need. They are good tools to use with a doc to discuss treatment options.
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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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And the PDF file, below.

Paul - my neuro has been quite strict about coming down off the Verapamil. It is a powerful blood pressure med, and we watched my BP closely at each step down in dosage to make sure I didn't spike.  We took it two week intervals from 360mg to 240mg to 120mg down to 0.  It worked out fine for me, and I hope it does for you as well.  I didn't rush it - on the advice of many here I wanted to be as certain as I could that the cycle was truly over before I began stepping down the dose.  Good luck to you.