Dear all, Like most members of this forum I suspect I'm here because I'm like you. A Clusterhead. Mine started 12 years ago and have settled down to 3 months of attacks every 2 years starting in late May/early June and ending in Aug/Sept.

For a decade I've lived with Leonard without any meds, help or support what so ever. The only thing I took was Cannabis which I found masked the shadows quite well. I wasn't diagnosed until I went to the doctors at the end of my last cycle in Sept 20011 when my usual doctor was off sick and I saw a locum. I'd hardly sat down before he mentioned Cluster Headaches and until that point I'd never heard of them. He mentioned Oxygen treatment but said that was the only option and as I was at the end of my cycle I was to endure them for the next week or two and return when the CH returned.

As expected Leonard went into his hibernation stage and the fecker woke up again 2 weeks ago. Straight to the doctors this time. My old doctor has retired now and been replaced by a nice up to date GP who has treated clusterheads before. She initially put me on 40mg of verapamil 3 times a day (now 4 time a day) and gave me a prescription for Sumatriptan. Sadly she only gave me 2 doses which I did inside 24 hrs and has so far insisted I continue with 2 dose Prescriptions due to the costs of them. She has also refused to give me O2 but she is more than happy to arrange it but only if the verapamil doesn't work. In the meantime I'm to continue with the Sumatriptan to combat Leonards attacks.

Thankfully the Verapamil does seem to be working. Yesterday was my 3rd PF day in a row which is unheard of so early into my cycle. Leonards shadow is still a constant reminder he's lurking around somewhere in there but I'm sure you clusterheads will agree, he can lurk all he likes, it's when he wakes he has us running scared.

And there you go. A brief synopsis of my story. I wish I wasn't here and I wish you didn't have to be either but we do and and we are. I've had no support or understanding for 12 years with this thing and it is so nice to find a whole community of people who are like me and who I can talk to.

Thanks for reading and feck the pain

PS
Leonard is named after Master Leonard - One of the Demon Spirits in the Gothic Dictionnaire Infernal. I believe he was a 3 horned goat with a human face who would gouge his initiates in the head with his horns. The cap seemed to fit so Leonard it is.

Call her bluff and ask for an increase in the Verap.
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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.

Welcome!  I am new here as well.  Find comfort that you are not alone.  Good luck my friend!

I love the Leonard thing.  Very funny - and appropriate.  Maybe I will name mine after my first wife.........

Thanks for the info on Verapamil Bob. That has now been printed off and will be added to the other information I've gather for my GP. Really useful and interesting

Neglected another basic item for your doc, below.

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Tyke,

Hope you're getting a lot of good information here. You're among understanding friends now. There is a vitamin D3 regimen that a lot of people have success with. Good luck with The Beast and best wishes.

rep

Hi all. It's been a few days since I wrote anything so I thought I'd give you all a quick update and ask a couple of questions.

Last Thursday night Leonard hit me with a KIP8. Sumatriptan didn't touch him and with no O2 or any other busting meds available, I had to ride it out. That hurt. Since then he's given me a KIP7 on Friday afternoon while I was on my way to collect my Sumatriptan. Thankfully I keep 2 tins of Redbull in the car for just such an occasion and they busted him good and proper just as the chemist was handing over my Nasal spray. He's also given me my usual lvl7 each night and  lets not forget that he reminds me he's there all day with a lvl2 shadow. 3 if he's feeling restless.

Yesterday I took another visit to the doc. When I'd finished explaining how I've been since my last visit and she'd studied my CH diary, she increased my dosage of verap to 240mg per day, gave me an ECG and took some blood. Thankfully she has also given me 10 injections of Sumatriptan which is a total weight off my mind. To date she has only prescribed me with 2 10mg nasal spray doses which I can do in a day and then I'm left with nothing for 48hrs until I can collect a repeat prescription. She would not Prescribe O2 though no matter how much I pleaded. I considered making a scene but  I calmed down when she gave me the injections and referred me to a Neuro for an emergency appointment with the promise that they would Prescribe the O2 if they deemed that I needed it.

Onwards and upwards ladies and gents and Feck the Pain

The d3 regiment is located here:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I am new on it myself, but as far as I can tell it or the verapamil are keeping the hits back - but I still have pretty bad shadows but I can live / work with that for now.  Recommend you get a Vit d3 level test as described as soon as possible so you can measure where you are in a month and go from there.  Hoping to know my results next week.