Not much of a forum person but going to give this a shot.  Been a Cluster Head for about 10 years and have only realized what these attacks actually are within the last 4 years.  I will can honestly say that I would not even wish this pain on my worst enemy.  My attacks have been cycling on and off every 2 years, and has been in the winter to spring transition period.  I will have days that an episode will last 2 hours and then seem to make my head hurt the rest of the day as though it was bruised in some way.  (hard to explain)  I do have shadows constantly reminding me that they are still here and that they WILL be returning.  Mainly my episodes that happen during the daytime hours will last an hour and for whatever reason will happen at 10:30am and usually last an hour.  90% of the episode are during the night time.  EVERY 2 HOURS!  They will last 30 minuets usually and have had some last longer but not as common.  My CH's are on the left side.  Ive never had them swap from side to side as Ive read that can happen.  My sinus cavity on the left will close and my left eye will swell and water up.  My neck is sore after the episode from straining it in attempts to relieve the pain somehow.  I am in an active period again after a 2 year break.  I am now, again, to the point of being fearful of going to sleep due to know all to well what is coming for the rest of the night.  Married, 5 children, 3 Grand kids and they are all aware of these episodes.  Employed, but cannot afford the insurance, so I push through this with nothing but hope that it will all go away again soon.  Well, there is the shart version of who I am I guess.
  Wish all of you PAIN FREE REST and shadowless days.

By the way, where are you from? A lot of our info is area specific, UK vs. the US etc. 

Joe

Then DEFINITELY give the D-3 regimen a shot. It's been a miracle for so many, worth a shot!!!

Joe

Since Verap. has proven effective, getting back on it would both save money over using abortives and give much improved quality of life.

Trust you are seeing a doc. Print following and share wiwth the doc:

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.

And after I asked you where you were from I noticed your post..........Hello from Denver....sheesh...what little I ever had I'm losing!!!!

Joe

Genisis wrote on May 25^th, 2013 at 5:18am:


The nasal cannula part almost certainly explains why it didn't work too well. You need to use a non-rebreather mask and a much higher flow rate than is possible with nasal cannula.

For lots of info about using oxygen to kill CHs read up about it on the oxygen page - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .