I was on this site many years ago. I left at the time because I felt the pressure was too high to go with alternative therapy (shrooms) without medical oversight, and because the attitude toward the medication therapy I was undergoing was extremely hostile.

Hopefully, it won't be the same this time.

I've been chronic for 14 years. I've run the gamut of medication therapies, and have finally gotten into to see a well-known neurologist who is using a simple medication regimen to help control the headaches. I'm not headache free, but the frequency and intensity are down to the point I can manage the attacks with Tylenol or Imitrex.

I take 320mg of Verapamil 3X/day to control my headaches, and the times of the year when they decide to flare up they do a nerve block in the greater occipital nerve. Considering 160mg of Verapamil 3X/day is the maximum they give for people with heart/blood pressure issues, I am watched by a cardiologist to make sure my blood pressure doesn't drop too low or I begin to have problems on my EKG (after all, Verapamil is primarily a heart/blood pressure medication).

One of the best things is the low cost of the Verapamil--with my insurance, I pay a little over $4 for a 30 day supply. I do tough through a lot of the lower grade attacks because I will get rebound if I use Imitrex or Tylenol too often, but it's nowhere near as rough as it used to be.

If people need to know who my doctor is and where he practices, let me know.

Really?

I was also chronic for 14 years until recently. Joined this site in 1999 and never saw any pressure to go alternative. It was openly discussed, but certainly NOT pressured!

The main thing that HAS been VERY heavily discussed in all of the years is Verapamil in very high doses with medical supervision - right along the lines of your treatment. MANY of us reported great success with 750mg to 960mg, years ago. "Vera" ;D at 640-720 mg became my favorite girlfriend about 10 years ago.

If you came here supporting the use of addictive pain meds for Cluster Headaches - and you felt some hostility - then yes! There certainly would have been hostility because we already KNEW that there were superior choices. We already knew that Verapmil was a better approach. Now, you may find that are even better/additional ways to tackle the problem. I haven't taken it in several months - again - thank to this site!

I sincerely hope that you didn't needlessly suffer too long by abandoning the help offered here? But, it's ALWAYS good that you have them under some level of control - regardless of how!

Marc

Gotta ask... have you tried high flow oxygen to abort attacks? You may be able to replace/reduce your need for Tylenol/Imitrex for those breakthrough hits by aborting with O2.

Hey Todd, another "Right Coaster" where abouts in the Golden State are you?

Verapamil is still the number one prevent used by CH'ers because of it's effectiveness and its great track record. Glad to hear it's gotten them under control for you. Do take a look at the oxygen site as learning to use it correctly all but eliminated my use of that damned expensive trex! :D

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Then take a quick read on this:

Follow this link to the medications section of this board and read the post 

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

Glad you're back, I think you'll find this to be a far more open, respectful forum then the wild west it was in the old days!

Joe

I'm in the SF Bay Area for those who want to know. I see Dr. Goadsby to try and help control my CH, can't find anyone better out there.

I've been through pretty much everything on the list of medications to control the CH, the only luck I had anywhere along the line was a few weeks respite with Nimotop. Goadsby put me on Verapamil at 960/day about three to four years ago, he had just developed the therapy four or five years before that and had moved to states shortly before I got in to see him.

Done the high flow O2, no luck. Did it at 15lpm, non-rebreather mask, 20-30min typical. No luck. Dr. Goadsby had me in as a "case study" when teaching residents and commented that sometimes you can't win them all.

I still get hit, even with the Verapamil. They still won't let me be entirely for any length of time. So I'm not pain free, but life is nowhere near as miserable as it used to be.

Since you've tried oxygen at 15lpm, try it at a higher rate. There have been quite a few people here who haven't had success at 15lpm but have done so when going higher.

For my CHs, I average about 12 minutes to kill at CH at 15lpm, but under 5 at 25lpm.

Give Batch a PM, he is the oxygen guru.

With the verapamil did you ever try it combined with lithium? This is called the chronic's cocktail and it has had results when both individually have failed.

Also look at the approach many of us have had success with using vitamin D3. Again Batch is the expert on this and it has worked well for over 80% of people who have tried it. I've been CH pain free on it for well over 1.5 years.

[smiley=bow.gif] [smiley=bow.gif] [smiley=bow.gif] GOADSBY [smiley=bow.gif] [smiley=bow.gif] [smiley=bow.gif]

You're a lucky man, you have one of the premier CH Doctors. I'm a bit south of you in the San Diego area. I would second the suggestion on the 02 at a higher flow rate as many who had zero success at 15 LPM suddenly had success at rates like 25 to 45 LPM.

Joe