Hi. I'm a 34-year-old male and I've suffered from cluster headaches since I was 14 years old. Usually one a day every other day or over the course of a couple of months before a a couple month long remission. It was when I was about 21 or so that I finally got to a doctor about them, who knew what they were and prescribed me Verapimil which has done a fantastic job of keeping the headaches away.  Except....

Occasionally there'll be a medication SNAFU that'll lead to me missing a dose of Verapimil, usually this is me being between refills and not yet having a chance to get to the pharmacy, most recently it was a mix-up in my pill-box which I had filled with a different, similar-looking, medication that was in a prescription bottle near-by.  No big mistake as far as the medication goes as the other medication was simply a pain-killer from a recent wisdom-tooth extraction but a BIG deal in terms of my headaches.

After missing a couple of days of Verapimil, as it has been in the past, it's like the headaches want to make-up for lost-time and they come RIGHT  back. Seriously, I miss two or three days and then they come back with a vengeance rather than simply waiting until a new cluster-cycle would have started.   On top of this they don't go away again when I restart the medication. Usually taking a couple of months (essentially a cluster cycle) to go away again.  I'm told this is because it takes the medication time to re-build in the system.  Which doesn't make sense, the last one I had before the recent bout was a couple of years ago.  I don't see how missing two days of a medication could undo two years of flawless consumption.

Anyway, we all know the "aura" one gets when a headache is coming. You know it. You feel it. It's sort of like how your grandfather claims he knows its going to rain because the arthritis in his knee flares up.  Only way more accurate.

So a month or so ago when the current cluster period started I got the "aura" and decided I couldn't handle a headache, called in to work and then drove to the ER telling the desk what my problem was and that I simply could not handle the headache.  Inside the room I was given O2 (though through a nose-breather) and some pain-killer and anti-nausea medication (first few headaches I get cause severe nausea) via IV.    I did this again four days ago with one of the more recent headaches because with that "aura" I could tell it was going to be a terrible one.  This time at the ER I was given the mask with the O2 and talked with the ER doctor who said he's going to try and to set me up with a specialist he knows on cluster headaches. (The guy is a hard-to-see neurologist.) 

Anyway, sorry for the Life Story (R) up there entitled "Cluster Headaches: Proof God Hates Me" but it boils down to my essential question:

Anyone else have experienced this? Where if you miss a day or two of your preventative/prophylactic medication the headaches come RIGHT back to make up lost time?

The only med I had that issue with was prednisone. It would block 100% of the attacks but as soon as I came off of it, the damn would break and the beast would roar back with a vengeance, Great to hear you're getting referred to a specialist, there is so much available now to make CH manageable and you have a much better chance of availing yourself of these treatments through a specialist.

This is my regimen for managing the beast, it's been perfected over 30 years of trial and error.  But first and MOST IMPORTANTLY

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

So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, I'm not surprised that's what your doc put you on as it has such a good track record for CH, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. You need to get a home oxygen set-up, it's quite cheap and easy to use but the faster you get on it the faster you can abort an attack. On cycle I keep an E-tank leaning against my bed so I can fire it off at a moments notice! Read this link as it must be used correctly or it will not work

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This link will show you how to get set up with welding oxygen:

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Hey Trekker, and welcome. CHs hate everyone. The beast is a rampaging nondiscriminatory life wrecker. Having said that, I have found that my current med/supplement list of preventatives appears to be just as delicate as is yours. When I miss a round of morning or evening doses, I am in danger of a hit coming. So I work hard at not missing one. I especially try to not to miss a dose of verapamil since that is my front line preventative. And I never run out of O2. Never. Good luck and God bless. lance