I'm no stranger to CH, over 17 yrs. now.  Finally found o2 a year and a half ago.  As far as prevent, it's always been old school.  High blood pressure meds and fironal.  Anyway, this cycle I'm in is almost 2 months now.  The o2 is great aborting them, but I've done nothing this go round as far as a prevent, and like always I'm wondering if they are ever going away!!!!  Could I get some suggestions please.  I'm headed back to the Doc next week.

lol  what?

Bstrong wrote on Dec 7^th, 2009 at 5:44pm:


Hi,

Dump the fiorinal....just makes a wide awake clusterhead in pain a sleepy ch in pain....

What's the bp med? Inderal and Tenormin ARE old school....Inderal works for some with migraine (maybe some with ch, have seen a few successes but sure aint close to universal)...don't know about the Tenormin. I've used both to no effect.

Med of choice is verapamil...usually in much higher doses for ch than bp issues (e.g. I use 960 mg/dy in divided doses).

Whether to go prevent free or not is definitely a highly personal choice. You will find both views on this site. Out of a nearly 28 yr "career" of ch, I went med free (except for o2) for one 7 yr period. Just got so tired of the side effects from a dozen plus different meds....
That ended out of a (personal) desperation of "when is this going to end?"

I'm with Brew, and others, prevents MAY extend cycles...it's part of the choice (chance) you need to consider..... STRONGLY.

Best,

Jon

Verapamil.

If you've never tried Verap. then you can't make a judgment about whether it extends a cycle or not. Can only give it a try over a couple of cycles and see. But it has a long, successful track record.
=======
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).

Im epsodic,  but always scared as hell that it will change.  I think if it was chronic, it would not be a choice but to try any preventitive.  I appreciate everyones response.

Some of my episodic years were medicated and not fun.

My chronic years were allways medicated, very long and not fun at all.

after 20 years
10 years worth of CH was completely unmedicated, long remissions, clean attacks, clear mind, life was more livable but still not allways fun.

4 years CH free with RC seeds, life was and is incredible.

1 month with mixed RC results but life is still allright as I get several hours off from CH pain every few days like right now.. and the hits seldom last more than an hour or so and I can get at least 40 minutes of sleep every night in 10 minute spurts. life is tiring.
I think the seeds are weak but also think I am going to just quit having CH soon.

The choice is yours on the preventative I think a lot of folks have far better luck than I. I also think a lot of folks would be in far better straits without them.

The only problem for me with rx preventives was using them.

This is interesting.
When I was episodic I would have six week cycles spring and autumn (although for most of that I didn't even have a diagnosis)
I was 16 weeks into a cycle (when I turned chronic) before trying verapamil. It didn't work for me. I have low BP and was fainting every time I stood up. I then tried lithium which had no effect whatsoever for me. Next was topiramate (topomax) and the nicest thing I can say about that is that it was not helpful for me. In fact it was so bad I swore off preventatives. I would have tried methysergide but for other medical reasons, can't. Same reason I can't try DHE (yet).

I haven't used any preventative measures in almost three years now. I'm still chronic. All I use is oxygen and occasional frovatriptan when travelling.

I think for ME - taking a stand and not keeping allowing myself to get disheartened by continued failure was a good thing. Right now I am "coping" - I'm actually getting to a point where I'm getting hit a lot more again so how I'll feel in a couple of months remains open. I have really learned my lesson about saying "Never"!

I (chronic since 2001) stopped all preventatives in August 2008.
After ~3 weeks I had fewer, less intense, hits.

For me: no more preventatives except the CB ones.

Hi Joni in response

So, Are you chronic now?  .............No. way way too early to say.

Have you been CH free for 4 years until now? ...........98% yes pain wise. I have had shadows and symptoms occasionaly that I easily rid myself of with the seeds, but not what I would call real CH. I unfortunately stopped paying attention to these symptoms for about 3 months and here I am.

What makes you think you are going to quit having HA's? ...... Willpower, I just dont want them anymore. I want to be like Jazz 

I know nothing about RC seeds and don't think I would have the nerve to use them.  I'm a chicken.  .........Your Not a chicken just erring on the side of caution thats ok. It's all about choices.