Hello everyone. I figured it was time to say hi and thank you to all. I've been suffering from CHs for 17 yrs. In the past 5 yrs or so they have really taken a turn for the worse lasting about 2-3 months and 1 hr and 15 mins religiously.

A few yrs ago my wife (DP80) found this website and we have learned so much from you all. So Thank you all.

Today I went and got some imitrex injections, prednisone and verapamil. Not sure how great they will be yet.

I've been treating my CHs with a million aspirins (very bad) melatonin, energy drinks, peanuts, oats, ice packs and plenty of water.

Sometimes this crazy combination works but not enough to keep me away from the neurologist.

For many yrs I just put the Dr off for lack of insurance and for being hard headed but enough is enough and I had to go. I got imitrex tablets but they dont reach the problem on time.

So... thats my story. Again thank you all for sharing so much info. Hope not to see you soon.  ::) But I will....

Welcome Wabi Sabi and I'm glad this site is as helpful to you as it has been for me and many others!!

I hope you are on the Verapamil SR it's better than the regular verapamil. I found this out the hard way  :o 

My dad has used the Aspirin method and it drives me crazy.  He's already had one ulser...grrrr  but he's where I get my stubbornness from so I can't say much  :P  He hates doc's and medication so he suffers with his aspirin.  Me??  I say F*&^ that!  I'll take the verapamil and imitrex and oxygen !!!

Be sure to hug your wife she is awesome for searching this site out and being as supportive as she is to you!!

PF DAYS AND NIGHTS TO YOU!!   

I thank her all the time. I can't believe many would be nearly as supportive specially when yrs ago we didnt even know what I had other than headaches that visited me yrly

You are a lucky man my friend!!!

JustNotRight wrote on Sep 4^th, 2009 at 6:31pm:

I hope you are on the Verapamil SR it's better than the regular verapamil. I found this out the hard way

Wrong!

Most experts, including Prof P. Goadsby, recommend the regular release Verapamil. That's also the experience reported mostly on this board.

                 [smiley=smokin.gif]

AlienSpaceGuy wrote on Sep 4^th, 2009 at 7:41pm:

JustNotRight wrote on Sep 4th, 2009 at 6:31pm: I hope you are on the Verapamil SR it's better than the regular verapamil. I found this out the hard way      Wrong! Most experts, including Prof P. Goadsby, recommend the regular release Verapamil. That's also the experience reported mostly on this board.

I agree wholeheartedly. Standard release verapamil works much better for me than the sustained release variety.

Brew wrote on Sep 4^th, 2009 at 8:24pm:

Wrong! Most experts, including Prof P. Goadsby, recommend the regular release Verapamil. That's also the experience reported mostly on this board.I agree wholeheartedly. Standard release verapamil works much better for me than the sustained release variety.

which is the Verapamil SA?

Talk to your doc, but I believe the "SA" designation stands for sinoatrial. I THINK this is the standard stuff.

"SR" stands for sustained release.

But like I said, talk to your doc because I'm not 100% sure. Or ask your pharmacist.

I saw a massive improvement moving from larger doses of SR, 2/4 times per day to many smaller doses regular release for the same total.  ( I ramp between 360mg to 720mg as needed)

The effectiveness of this approach was reported here for years, but I shrugged it off and trusted my old Neuro to take care of me. What a mistake. Be sure that you are not using the "sustained release" formula. It won't hurt you, it just won't work as well.

Now I'm proactive in my treatment and have my life back.

Marc

Ok . . .went and dug out a bottle (old) of the Verap I used to take.  Labeled Verapamil 240MG CR - Generic for Calan SR . . . blue, oblong, breakable tablets.

When I came here (2/02), copied the info and took to my doc, was having 6-8 attacks daily and sometimes 3-5 at night.  Usually Verap is tapered up to an effective dosage.  I had my first pain-free day in over a year about 3 weeks after starting the Verap when I reached 240mg (had 3 attacks that night but I had 02 to kill them).  I got as high as 480mg, then cut back to 360mg.  Many use much higher doses and often in combination with other meds like lithium. 

Don't be surprised if you have some constipation with the Verapamil . .  many do (I did), but easily controlled with diet change or stool softeners.  And don't be surprised by the Verapamil "buzz" you might experience within 15-20 minutes of taking it . . . tis normal.

You didn't mention 02.  You DO have oxygen don't you?  If not, make that your next script request.  Most here use the 02 first to abort most attacks and save the Imitrex for the attacks the 02 doesn't reach. I have some artery blockage and high cholesterol, so can't use Trex at all . . . 02 is my only abortive.

  Be Safe,

    PFDANs

     Richard

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

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).

AlienSpaceGuy wrote on Sep 4^th, 2009 at 7:41pm:

JustNotRight wrote on Sep 4th, 2009 at 6:31pm: I hope you are on the Verapamil SR it's better than the regular verapamil. I found this out the hard way      Wrong! Most experts, including Prof P. Goadsby, recommend the regular release Verapamil. That's also the experience reported mostly on this board.                  [smiley=smokin.gif]

It may be wrong for some but the Verapamil Sr works better for me especially after being on it for awhile.

Each person is different, you all seem to need to be reminded of that on occasion.  ::)

WOW I love you all! So much research and information. I feel like I'm back in school! Thank you so much

Brew wrote on Sep 4^th, 2009 at 8:45pm:

"SR" stands for sustained release.

You are correct Brew, I just have a habbit of calling it Slow release  ;D  one of many of my foibles  :-X




Quote:

Wabi Sabi WOW I love you all! So much research and information. I feel like I'm back in school! Thank you so much

I'm glad the information and understanding you found here is of help to you, as it has been for me.

PFDAN to you ALL!!!

Lawrence wrote on Sep 4^th, 2009 at 8:32pm:

Brew wrote on Sep 4th, 2009 at 8:24pm: Wrong! Most experts, including Prof P. Goadsby, recommend the regular release Verapamil. That's also the experience reported mostly on this board.I agree wholeheartedly. Standard release verapamil works much better for me than the sustained release variety. which is the Verapamil SA?

Lawrence - If you're going to slice and dice quotes, you gotta make sure you're attributing to the proper person. I never said what's stated above.

Brew wrote on Sep 5^th, 2009 at 4:35pm:

which is the Verapamil SA?Lawrence - If you're going to slice and dice quotes, you gotta make sure you're attributing to the proper person. I never said what's stated above.

Sorry about that Brew....dont know how I misquoted you.