Been diagnosed! and I got a prescription for Verapamil.  The neuro was receptive to oxygen (and said I can get without a Rx, so help myself).  I'm going to get those BP meds and my O2 today.  I think I just lived out my last hit without proper medical help, so I'm hopeful.

Thank you so much for all you guys have done.  I hear stories of 25 years living with clusters before someone gets diagnosed.  I'm only 24, and thanks to all the people here I have a good idea of how I can help live with this burden.  Without this site, without all you supportive people, I wouldve just given up and given into the pain.  Suicidal thoughts are a thing of the past.  I really can't thank you guys enough. I still beleive the support of this site saved me from taking my life more than once.
Cheers, and best of luck to you all for PF days.

Hi Martin!

THAT IS SO GOOD TO HEAR!

I am bouncing with that news..A success story lifts us all here so much!
And so glad you have not had to endure this for as long as many of the souls here have done!

BONUS!

Respect and Best Wishes for a PF free life Mate!

Gary
[smiley=2vrolijk_08.gif]

I feel so fortunate; I appreciate all the hell everyone's gone through before me in order to bring light to clusters.

All their hard work is truly remarkable.  Im a story of THEIR success indeed,

Thanks Gary.

PS
What is the name of your Neuro?
Bet some CH's in your area would possibly benefit a great deal?

Gary                                                                                             

Martin wrote on Feb 18^th, 2011 at 6:56am:

Im a story of THEIR success indeed,

That is a fine accolade!...
Well said to you Sir!

Gary

That's great news, Martin! Keep in mind it does take awhile for the verapamil to kick in. What is your dosage level? And good luck with that O2. You're gonna think you were born again! Blessings. lance

Great news Martin. Hope the 02 proves the magic for you that it's been for me. Add some fiber to your diet!!! Verapamil will "slow you up" a whisker. And if you have any problems with the 02 ask questions!

Joe

Very good!

An issue of Verp dosing and form of med comes up all the time, here. So, here is the stock response. Check your doc's dosing schedule against this widely used protocol and give him a copy as a tool for any discussion you may want to have.
====

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).

=======================================
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.

Oh thanks Bob.  I'm in Canada, and my drugstore said they don't have the quick acting verap any more, just slow released.  anyone else know of this?  are they crazy, and should I be asking for quick acting instead of slow released?

I just saw my doctor (dr Taylor, great guy) and he gave me an O2 as well as 6mg Imitrex injectors prescriptions as per my request.  OMG i feel I might actually be able to take these things down, working out that verap situation and off to find O2.  non - rebreather, 15L/min scrip just Like i asked :) :)

p.s.  I live in Ottawa, I went to the E.R. at the Ottawa general and was referred to a neurologist there Dr. Hakim.  I saw him 10 days after my E.R. visit.
I was prescribed 120mg twice a day for a week, and if I take well, to up to 120mg x4 a day. 

If you can only get extended release then the issue becomes: what would your source be for regular?

Required: if you do well with extended, then there is no issue. Number of our folks have found the switch to regular form is more effective and the quote from Goadsby is sort of direct word from the CH god.

If it becomes necessary, there are other preventives but Verap has the longest history of effectivenss and limited side effects, so most start with it.

In a few weeks you will have sufficient experience to know whether this is a real issue for you or not.

That is the issue.  Hopefully the SR version of Verapamil works for me. had my first dose today, wish me luck!

Just an update, I now have imitrex injectors (damn pharmacists forgot the injector PEN, but I'll get one today i hope) and I have a big shiny silver M tank in my bedroom now.  im so happy; i'm ALMOST excited to give it a try. should get a better mask I feel, mine doesn't have valves over the holes on the sides so I've taped them up according to advice here.

but really I'd be happy if that M tank gathered dust till i died

Verap will take several days before you can make any judgment about effect, perhaps 7-10.

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

Don't know if you've visited the CH store. First 2 items are pretty sweet as fas as masks go.

Joe

Martin wrote on Feb 18^th, 2011 at 2:38pm:

That is the issue.  Hopefully the SR version of Verapamil works for me. had my first dose today, wish me luck!

I hope the SR version works as well for you as it does for me. I found I got better result on SR than the instant release. Expect it to take a couple of weeks to become effective.

Be forewarned that statistics show the regular release formulation of verapamil works better for most clusterheads. About 70% if I recall correctly.