Hello-
Long time reader, 1st post. Have had CH since mid 20s, 49 now. over the last 15 years, frequency and pain have lessened considerably (have not had a cycle in 3 years [and then it was a KIP 5-6, at 1:30 AM every night for about 3 weeks ] was able to just "meditate/breath" the beast away in a 1/2 hour, then back to sleep) - until 2 weeks ago... 4-5 doozies a night, no sleep.... Went to GP who gave me a script for Sumatriptan Nasal Spray (20mg). It works !!! (so far) I take a dose when I feel one coming on in the evening and the pain fades in 2 to 10 minutes before gathering strength. This was 4 days ago and I have gotten a full nights sleep since !!! I am going to see a neurologist next week (1st time). As a long time ClusterHead, I know there is no "silver bullet", but I would like to ask all you fellow Clusterheads if any of you have found relief using this stuff?
Best regards to you all.

Thanks for the post Glassman - So far, 1 dose before bed seems to keep the beast away all night !?!?! Going for a CT scan tomorrow to rule out something other than CH and then to Neurologist next week. I will take your suggestion and check out the 1 2 3 post.
Best Regards

If you are having an increase in attacks it may be time to discuss the use of a preventive med when you see your doc. (See PDF file, below in addition to the following material.)
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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.

Thanks all !!!

skeevedout wrote on Mar 22^nd, 2011 at 8:25am:


It's a good abortive, but as you can see, getting enough for a one, two, or three month cycle isn't all that easy.  This is one of the strong advantages of an oxygen prescription, and using the Imitrex spray as a backup, not as a sole or main abortive.  Also there are preventatives as Bob has mentioned, which may be able to cut down the number of hits very much.

Yep, I've had the same problem. You can purchase the Sumitriptan but you'll pay full price for it (and, yes I have (ouch! )) but then it's that or facing the beast unarmed.

This is very important:
Look at the Oxygen information we have on this website. 

It is better than the Sumitriptan by far and if your Doc or insurance is hinky about it, get set up with welder's O2, it's the same quality as medical O2 and a whole lot cheaper.  You can hit the O2 as many times a day as you need to.

Just don't let the welder supply company know what you intend to do with it.  Tell them you're buddy is teaching you to weld or something.
-Gary

Hey Skeevedout,
Another tip I forgot to mention:
during my remissions I stockpiled the Sumitriptan nasal like mad (using the insurance coverage) - whenever I had some extra dough ray me! So I have enough that during this past cycle (Jan 14 to Feb 12) I could do my two a day as needed (if I needed...) and not have to pay full price.
-Gary