Hi everyone, I have had episodic clusters for about 14 years now I'm 36 year old male and went undiagnosed for about the first 7 years of my clusters. It wasn't until about 2014 that I was aware of any sort of medication or mediation of the headaches. I've used sumatriptan injections, been put on verapamil and prednisone and like most everyone.
I discovered this board about 3 years ago and used the D3 regiment with great success and combined it with a ketogenic diet during clusters and that has greatly helped manage my clusters. My clusters are generally about 8 weeks long and 3 years ago I only had to use 8 injections to ward off headaches over that 8 week period so really only once a week and didn't' really have to suffer through a 3-hour cluster or have my life interrupted much like it was in the past.
Anyway, what I wanted to share was something that I have discovered that has been greatly effective in my current cluster cycle and I know with this condition the variations of what works for everyone is very different but I wanted to share what has worked for me in hopes it may work for others.
I can usually tell when I'm about to start a cluster by the shadows coming about a week or 2 prior I'll feel as though one is about to start and then subside until about a week later the shadow will turn full-blown to a cluster and then I know I'm in cycle for about the next 8 weeks. So my last two cycles which thankfully have all been year-long remissions I had success 100% of the time in aborting the headaches with a vigorous exercise which I know has been discussed here.
So when I noticed this current cycle was about to start the 2nd I felt the shadows coming if I was able to I would begin exercise. If the weather permits or the situation like not being at work or at some other commitment I would go outside and run, or I have an elliptical machine in my garage a heavy bag and kettlebells and weights. The key to this is to begin the exercise once you feel as though a headache is coming on. You cannot wait for it to fully take hold or the exercise won't' work, at least in my case.
So armed with this knowledge I began immediately and aborted all of my initial attacks successfully I would get woken up sometimes twice in the middle of the night and get right to exercising. The first week I had several frequent attacks but I stayed the course aborted all of them and then I noticed a full week of zero attacks. Then a week and a half. So I decided to test where I was at and have a drink. I believe for just about all of us of alcohol is a massive trigger. So I had 2 glasses of whiskey and my head did not flicker. I thought wow perhaps I busted the cluster.
While I didn't fully abort the cluster I did not get any inkling of an attack for a full week after I decided to have my first drink. A week later I had another drink and I got a mild cluster that lasted about 30 minutes and did not require any medication. But I did get two more attacks that week that I was able to abort with exercise. Since then which was about 5 weeks ago I've had about 5 total attacks that were mild and if I exercised I was able to abort. I had another drink last week and it triggered an attack and I got right to work with exercise and aborted it.
This passed weekend believing I had totally aborted the cluster I had several drinks Friday night not one attack. Sunday I had several drinks not one attack and then this Monday I randomly got one while at work and had to use one injection. I went back and did my math and I'm technically for my normal baseline in week 6 of a usual 8-week cluster so perhaps I pressed my luck a little too much.
But one headache in 6 weeks to me is a great success and I'll take that every time. I had several attacks that day that I defeated with exercise. And my head has not flickered since. I have not had any anxiety about a headache this whole cluster and I feel as though I know I can defeat them. I was so confident in this that I gave a close friend of mine my last 5 remaining injections when he was in need of them for his own clusters.
I know this may not work for everyone but it's worked so massively well for me I can't keep it to myself. The trick is that once you feel like a headache is coming on get busy, don't' let it ever get it's proverbial teeth in and become a full-blown headache. I believe with the consistency I had in never letting them ever fully come on I re-wired my brain or hit the switch on the mechanism telling my brain to inflame and being a headache or drastically lowered that switch or trigger.
I should note that for me I noticed I have to get my heart rate elevated and keep it elevated breaking a good sweat for about 12-20 minutes depending on the severity of the attack. But that seems to be what works. at least for me.
Whether that is true or false is irrelevant it has worked for me, placebo or not I don't care. For me, I believe it and will continue to and use this method going forward. Good luck everyone.