14year Episodic CH'er with Breakthrough

[d-rock724]

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. 

[jon019]

...hi d-rock...glad ya found what works...this is such an odd affliction that while many have found your same success with vigorous exercise (at least aborting a hit) for some the same is a trigger...go figure!   have you tried oxygen?... it's way more convenient...

best

jonathan

[d-rock724]

23 hours ago, jon019 said:

...hi d-rock...glad ya found what works...this is such an odd affliction that while many have found your same success with vigorous exercise (at least aborting a hit) for some the same is a trigger...go figure!   have you tried oxygen?... it's way more convenient...

best

jonathan

Hi, Jonathan thank you for the welcome. I haven't tried oxygen I have been prescribed it but I just didn't feel like jumping through all the hoops with my insurance company to get it. 

I do know some friends of mine who are suffering from migraines where exercise is a trigger. However this method is working wonders for me, I truly believe the trick is to never let the headache get its teeth in it flips the switch to stop sending attack signals. This is all conjecture obviously but if it's linked to the circadian rhythm and you can interrupt that pattern and give it a new one? I don't know but it's working for me. 

[d-rock724]

16 hours ago, Brain on fire said:

Hmm oxygen or exercise... I like exercise but it never helped my CH. Glad it works for you.

I think exercise and oxygen are related. When you exercise vigorously and increase your heart rate, your respiration rate changes and you require larger amounts of oxygen to fuel the workout. There is also a slew of chemical reactions occurring in your brain that are anti-inflammatory you get surges of dopamine, serotonin, and norepinephrine which I read are possibly diminished in production during a cycle. I'm not a doctor or a scientist so this is all bro-science obviously. 

 

Anyway for me what I have noticed is the trick is to begin exercising right away the second you feel a headache potentially starting you have to get busy. I have had a 100% success rate with this and each time I successfully abort a headache I notice the frequency of attacks diminishes as well. Give it a try and let me know how it works. I know with this affliction it isn't' a one size fits all but this has been so massively game-changing for me I had to share it and I hope that it works for anyone else. 

This does require a certain level of psychosis to adhere to I'll grant you that but I'm willing to give in to that for the results. I'm at week 6 and I have been woken up about 3-4 and had to work out in the middle of the night sometimes twice in a night but I haven't had to suffer a single headache. Fairtrade in my opinion and I refuse to live at the mercy of this condition so I will do what is needed every time. I've made that bargain with myself already so here's hoping it continues to work for me and works for others. 

[d-rock724]

18 hours ago, Brain on fire said:

Former tri-athelete, can require some level of psychosis. 

We are for sure on the same page then sir. I've long admired tri-athletes I would like to put my focus on completing one after I'm done fighting. 

But since you are on the same level of psychosis I would love to hear some feedback if you give this a shot. Like I said once I notice that a headache is coming on I get busy and start working out. I'll either shadow box hard, hit the bag or hop on the treadmill, elliptical or rower. Depending on the severity of the headache or the time frame which I begin will vary on the duration of workout required. 

 

I find it's usually anywhere between 12-25 minutes required but if you wait til it's already got it's teeth in it doesn't work. But if you get on it before it's fully on I've had 100% success even when I've been woken up middle of the night and it's like almost fully on if I get busy I can beat it. I would love to hear if this method works for anyone else not just in aborting a single headache but in mitigating the frequency and severity of the attacks. 

[spiny]

Just to chime in - you are getting rid of the CO2 and raising the O2 and building up your strength and body too!! Dang good in my book! 

Carry on and stay healthy and happy d-rock!!  It wish I could do that too! I would be in pretty great shape every spring! 

Thank you for the contribution! 

[Luis]

Hello!!!

 

Do you think exercising hours before an attack can stop an attack? I work in an office and I probably will not be able to exercise like you are suggesting. 

[Jade333]

My father would go running when he got the attacks in his thirties. Perhaps that has helped his remission all these years.