I generally have 2 bouts a year.  July and November.

This July just gone was the first bout with Verapamil.  I started it at 240 about 12 days before my expected first hit.

The results were FANTASTIC!!!  In the whole month, I had one kip 1, one kip 2, and that was it!!!!  It was WAY past my wildest dreams.  For the first time in over 15 years, I lived a normal, healthy life in an attack month with virtually NO PAIN  :D

So, fast forward to now.  Sadly, at th start of October, I lost my bus ticket and had to walk to the doctors, arriving over an hour late for my ECG.  Of course, being that late, I couldn't be seen.

As it's flu-jab season here in Wales, I had to wait weeks for a re-scheduled apointment, which I had yesterday (Thursday).

I had the ECG and got the Verapamil prescription.

The only problem being that my first attack came early (Wednesday night).

While Thursday night was without a major attack, I had a middling attack this morning (Friday) after taking a bath.  (Unlike some, I find that heat helps nd cold can make things worse, or even trigger an attack - one thing that has done in the past is wet hair drying, especially if somewhere cold - this is what triggered this morning's attack).

The timeline is as follows...

TUESDAY NIGHT - Shadows/Kip 1

WEDS NIGHT  - 4am  First major attack - kip 7-8, duration 3 hours

THURSDAY EVENING - Kip 1-2 after dosing

THURSDAY NIGHT - 4am - Kip 2, duration approx 1 hour

FRIDAY MORNING - Kip 4-5 after bath/wet hair

FRIDAY ALL DAY - Heavy shadows - pressure behind eye and veins around nose/temple dilated.

FRIDAY NIGHT (midnight) - Kip 2 after falling asleep, fading to heavy shadows.


While, thankfully, I have only had one major attack, I'm having pretty much constant heavy shadows, nd can feel an attack JUST below the surface. (please wish me luck for tonight).

As I started the Verapamil late and had the first attack before I started, what can I expect?  My July bout was, for the most part, almost shadow free - that's how effective it was.

Have I blown it by starting late?  Can I expect the level of success that I have in July?  If so, how long do I have to wait?  (I can be impatient at the best of times).

Also, as was par for the course before last July, I am constantly tired.  Attacks at night are largely to blame for this, but, as said, only one major attack so far.  Verapamil in July put paid to the tiredness as well.

Hoping for the best, but, fearing the worst.  Anyone got any answers?

As a side note, last year, I started making a skin for this forum, but, never finished it....I have re-jigged the coding and it's almost done...I do this for pretty much all websites I visit as white-sheet backgrounds don't suit me, even when I'm cluster free...given the nature of this forum, I thought it may be of interest to some (the skin is shades of blue with white & tellow text).  I'll make it known when it's finished and uploaded.

Chances are in your favor that working up to the regular dose will give you good relief after you body has a chance to "accept" it.

Whether this cycle or some future one, don't be surprised it becomes necessary to increase your dose. Not a predicton, just a not uncommon experience.

If you haven't see this protocol, it's widely used:

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.

Verapamil is good, but it doesn't stop every CH from happening, so you need something to abort any CHs that get through.

Have you got or tried any of the following:

• Oxygen - non-rebreather mask / high flow rate?
  
• Imitrex injections?

Using one of the above should kill off a CH in a few minutes, not the hour or more that you seem to suffer through.

Bob Johnson wrote on Oct 28^th, 2011 at 9:38pm:

Chances are in your favor that working up to the regular dose will give you good relief after you body has a chance to "accept" it.

Thanks for the quick and informative answer :)

As far as working up to the regular dose, I'm already there....the starting dose of 240 worked for me in July (I'm aware that at some point I may need an increase).

I'm once again on 240...any idea of the timescale for my body to accept it?

Mike NZ wrote on Oct 28^th, 2011 at 9:41pm:

Verapamil is good, but it doesn't stop every CH from happening, so you need something to abort any CHs that get through. Have you got or tried any of the following: Oxygen - non-rebreather mask / high flow rate? Imitrex injections? Using one of the above should kill off a CH in a few minutes, not the hour or more that you seem to suffer through.

Yes, I have Sumatriptan as an abortive.  I don't like using it unless I get a kip 7+, simply because it's recommended that you only use once in 24 hours, although, can use 2 at a push (but certainly no more than 2).

I worry that if I use it for a kip 4 or 5 then get one, or two kip 7+ attacks, I'll be stuck...

Do whatever you need to do to get oxygen. It's got none of the side effects of imitrex and you can use it multiple times a day without any issues.

For verapamil, it typically takes about 7-10 days for a dose change to become effective, so if you're increasing your dose (done under the supervision of a doctor) wait for 2 weeks or so before changing again.

Jangly Mark,
You are not alone as there are over 9300 others just like you and I suffering from Cluster Headaches.

Verapamil generally takes a couple weeks to get into your bloodstream before frequency and intensity of attacks minimize. 

Are you taking Verapamil in the form of immediate release or sustained release?

Do you take Verapamil spread throughout the day or all at once?

Have you tried the Imitrex Trick to get more bang for your buck?

Got O2?

LasVegas wrote on Oct 29^th, 2011 at 12:54am:

Jangly Mark, You are not alone as there are over 9300 others just like you and I suffering from Cluster Headaches. Verapamil generally takes a couple weeks to get into your bloodstream before frequency and intensity of attacks minimize.  Are you taking Verapamil in the form of immediate release or sustained release? Do you take Verapamil spread throughout the day or all at once? Have you tried the Imitrex Trick to get more bang for your buck? Got O2?

Firstly, I cannot have 02 as there are (including me) four smokers in the house.  I would love to have it, but, that's just the way it is.  Believe me, I've tried.

As far as Verapamil is concerned, I'm taking it in tablet form, 80, 3 times a day.  I haven't had any guidance (and there's no specific instructions), but, I take each pill after food.  Last time, without food, they knocked me bandy.

This was the starting dose last time.  I have never had a dose increase as 240 was enough.  This is the same dose that I started on this time.  I can (subject to ECG tests) have dose increases as needed.

The Imitrex trick?  Please do tell...

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

This is the imitrex tip.

As far as oxygen, the majority of CH'ers smoke. If you can't get medical oxygen, look into getting welding oxygen. It's the same stuff, just requires a slightly different delivery system. Many on the board use it.

Simple precautions make it safe. Don't smoke while using it, after aborting with 02, allow 10 minutes for your clothing to air all the oxygen out before you light up again. I've been at conventions where it seems I was the ONLY person NOT smoking, people are aborting all around us with oxygen, no one is exploding! ;)

Joe

Click on this link:
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That will take you to the imitrex tip at left. Basically, you take an autoinjector and turn it into a self-injector, reducing the trex to approximately 2mg/stick, thereby effectively getting 3x jabs out of one 6mg injector. I have found 2mg is enough to abort a hit.

As to the verapamil, for me, 240mg/day worked for awhile, but then I needed to increase. Am currently taking 640mg/day just to stay at a moderate level of hits. I am chronic so I deal with hits and shadows every day. Mostly abort with O2. Put a tank in the garage for goodness sake. Or quit smoking in the house. At any rate, don't let that keep you from having what many of us feel is the top rated abortive around. Blessings. lance

Good morning, Joe. Had to fix the hyperlink or I would have posted before you did. Sigh...beaten by a better man, again.
;D Blessings. lance

Smoking is a known trigger while in cycle....just sayin. 
To be PF or not to be PF...that is thy ?  Move!

Imitrex trick...as Lance pointed out a few minutes ago, is really helpful.  Try the stomach about an inch away from belly button.  It works!

Verapamil...are you under a doctor's care or self medicating?  Monitor blood pressure often, stay away from grapefruit products and energy drinks whilst taking
Verapamil.

wimsey1 wrote on Oct 29^th, 2011 at 8:31am:

Good morning, Joe. Had to fix the hyperlink or I would have posted before you did. Sigh...beaten by a better man, again. ;D Blessings. lance

I was thinking the same thing Lance.  Minutes apart.  Good Morning Lance and Joe  ;)

Timing is everything! ;) Mornin men!

Joe

Have to tell you....4 years into CH and just this year is the first time I've heard/read about the Imitrex tip....And it has SAVED MY LIFE.

Sometimes 1 to 2 mg is all I need to break the cycle.  The full 6 mgs sits me on my ass and just destroys me.  With the smaller amount I'm able to get rid of the pain - but still function as a Mom and take care of my family.

Not to mention it just makes me feel better about drugging myself so much! 

On top of which - the whole money saving & fear of running out of Imitrex.  Truly a life saver.  Who ever wrote it - Thank You!!!!