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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Meds "working" !?
        
(Message started by: FK5 on Apr 25^th, 2008, 12:25pm)

Title: Meds "working" !?
Post by FK5 on Apr 25^th, 2008, 12:25pm

Can somebody make sense of this for me?

New to meds and don't know what "works" actually means. Year four and first time I have been on Preventative meds and access to abortive meds.

Taking Verapamil and using oxygen. I'm in my cluster period right now for sure.

If the meds are working should I not be getting any shadows of any type...or are the meds a preventive from getting the major pain but will have some shadows?

As of today, my worst discomfort may have been a kip 4. 99% of the time for the past 4 weeks I just have the dull feeling of a pin behind my eye with a little burn to it. It hangs out for awhile but leaves to come back in a few minutes or an hour. Been sleeping like a baby at night. Knock on wood.

So somebody tell me if I'm supposed get any kips on meds or none at all. If they are "working".

Thanks,

Frank (FK5)

:)

Title: Re: Meds "working" !?
Post by DennisM1045 on Apr 25^th, 2008, 12:32pm

Tough question Frank. Like you've probably heard already, we are all different.

However the symptoms you describe sound like the relief I'm getting from Verapamil now. Some days are clear and PF and others I shadow a lot. No major hits so long as I'm consistent with the meds.

If the shadows get too persistent I can knock them down with O2. Was on the tank three times Wednesday. Shadowed a bit yesterday but didn't need any O2. Today I'm clear as a bell and lovin life.

So to me, it sounds like you are getting some relief from the meds.

Having said that, what are you taking and how much?
Is there any head room to work with?
Are you happy with the relief you are getting?

These are the questions only you and your Dr can answer.

-Dennis-

Title: Re: Meds "working" !?
Post by FK5 on Apr 25^th, 2008, 12:40pm

Dennis,

Thanks for the reply.

The o2 definately gets rid of any shadow I had thus far. The verapamil is one blue pill @ 240mg I think.

If this is is "working". I consider this to be just fine with me. Wish there was nothing but I can handle this.

I played college football and was drafted in the 4th round by Buffalo. My career ended because of a compound fracture to my leg with ligament tears throughout.

I tell you this because, if you compared the pain of the two. I would take a compound fracture any day. My fear of this pain is why I want to know what the word "working" means.

Thanks for your input

Title: Re: Meds "working" !?
Post by DennisM1045 on Apr 25^th, 2008, 1:05pm

No problem Frank. That's what we're here for.

You're right about the pain being in its own league. This is the only place you'll find where that is truly understood.

SR formulation Verapamil didn't work for me at all. I had to take the immediate release formulation instead. They give me 40mg pills and I take them three times a day. 3@7am-3@2pm-4@10pm This works well to keep things in line.

Shadows, burning eye pain, low level hits I can take. Just keep the big ones off me 8)

Take care my clusterbrother...

-Dennis-

Title: Re: Meds "working" !?
Post by Guiseppi on Apr 25^th, 2008, 1:24pm

If a preventative medication substantially reduces the frequency, and or intesnity of your attacks, we call that a success!! You are on a comparitively low dose of verapamil so if you start experiencing break thru attacks you might want to consider increasing the doseage. This is something you would work very closely with your doctor on as verapamil is a medication that needs to be monitored when you increase or decrease the doseage.

Additionally, many have had to combine lithium with the verapamil to get effective relief. May be an option for you down the line! For now cross your fingers and we'l all hope the verapamil holds em at bay for you! ;)

So glad to hear the verapamil seems to be helping and the oxygen is slaying it for you.

Guiseppi

Title: Re: Meds "working" !?
Post by FK5 on Apr 25^th, 2008, 1:39pm

Thanks to both of you.

If these shadows is as far as it goes. I'll put it down as a success.

:)

Title: Re: Meds "working" !?
Post by vietvet2tours on Apr 25^th, 2008, 2:52pm

Keep huffin that oxygen.

Potter

Title: Re: Meds "working" !?
Post by Bob_Johnson on Apr 25^th, 2008, 4:37pm

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.