During a cluster, it's all about constricting the blood vessels for me

[CHsince99]

I've suffered from CHs for 25 years.  They used to occur every year or so and last 8 weeks.  Like many CH sufferers, I'd rather "check out" than face a full-blown cluster without oxygen.  Thankfully, high-rate oxygen always works for me in 10 minutes.

I've been able to skip a few years by doing the following:  at the first indication of a shadow, completely cease both alcohol & exercise, and start taking 100 mg of caffeine every few hours.

My neurologist told me that there is not only one pathology for CHs.  I guess there are different types.  For whatever type I suffer, during a cluster period, vasodilation sparks a CH and vasoconstriction can prevent/abort a CH.

Edited December 23, 2024 by CHsince99
Adjusted caffeine intervals

[CHfather]

Thank you for this!

[Bejeeber]

Interesting! The pathology for some of us has been that vigorous exercise (like sprinting) can actually abort an impending attack. 

I'm a physiology ignoramus, but one thought that pops into my ignoramus mind is since such exercise draws more blood to the heart, lungs, etc. could it be drawing it away from the behind-the-eye sort of spots (inducing vasoconstriction there)?

Also, it is very common to get hit hardest during sleep, which I tend to think of as being kind of the opposite of exercise.  

I will note that others have reported exertion will trigger an attack for them though.

[Kevin Broderick]

I exercise every day by walking for an hour or 3 miles, very vigorous. lots o' hills. It does not bring on CHs for me but I'll still get them anyway a few hours later. Walking does help me in every other way. I might have mentioned that I am 75 and important that I get that in. The walk.

I'm in the middle of my twice-yearly CH episode and it's been a mother...usually only once a day but this one is 2-3 times a day at different hours than usual. As you all probably feel, my life turns upside down. This one started a week before Thanksgiving and will def go beyond New Year's. Just great. 1st time at this time of year.

I've only been using the triptans, D3, high doses of caffeine, etc. Since I have episodic, getting O2 seems like it would be hard for me to get. Ya know, finding a place to get the tanks, getting it up to my Apt... doing all that would be difficult for me, the logistics and all. I wish I could just call somebody up and have it delivered. Yeah right!

As well, I can't have any weed because that DOES bring on an attack for me. So, fun times.

Sorry I don't have any words of wisdom to contribute...just doing my usual griping. Sometimes that helps me, though. Happy freaking Holidays everyone. No, sincerely.

 

[Kevin Broderick]

Sorry about my previous post. I had just gotten over an attack and just tired. I didn't mention that I got the triptan injectable recently and it gets rid of them in about 3 or 4 minutes. That's a miracle for me but I think that most people know that you can't take that stuff all the time. Anyway. that's it for now

[devonrex]

I have not found exercise to abort but have found heavy exertion, the following rest time afterwards I will get hammered. I power back caffeine among other things. The outlier is a scalding hot shower is a vasodilator, the opposite of caffeine. Alcohol is always 100% hit and usually 9-10 scale. Sleep is rem state where you enter full deep 'relaxed' sleep not sure of the mechanism, but hypothalamus plays a part there and it could be vasodilation in the relaxed period.

[CHsince99]

Thank you each for your replies.  Who knew neurology could be so complicated?  

Hang in there, Kevin.  Thanks for sharing.  I'm currently in a cluster too.  Thankfully, I've managed to go the last six days without a full-blown CH, by drowning myself in coffee.  Needless to say, too much caffeine and no alcohol made me more Scrooge than usual but I'll obviously take that over a CH.

[CHsince99]

Bejeeber -- Thanks for helping think through this.  Like you said is common, I've been hardest hit when I'm sleeping in the middle of the night.  At least for me, I think it's at least partially because it is the one time I'm not taking caffeine.  Also, blood vessels dilate on and off during sleep.  [Insert hands in the air "who knows" emoji.]

[JesseRae]

I used to be super active. Rode horses, distance runner, Olympic weightlifting. But over the years I’ve lost more and more of myself to the beast. 
For me, any exercise that gets my heart rate up means I can feel every pump of my heart as an explosion in my face. Bending over has the same effect, anything that sends the blood to my head is a hard no. I try to do what I can when I’m out of a bout. Two years ago I slowly jogged two miles! But any strength or stamina I build I lose once I hit cluster season. It’s really demoralizing. So mostly I walk, at a slow gentle pace. During an attack I pace. Got to find a sweet spot of gentle movement while not aggravating things. 
I stopped all alcohol and caffeine a year ago. I’m realizing the caffeine was a mistake and have slowly been reintroducing it. 
I wish there was a rule book of exactly what to do and what not to do.

[CHfather]

On 12/24/2024 at 2:22 PM, Kevin Broderick said:

Since I have episodic, getting O2 seems like it would be hard for me to get. Ya know, finding a place to get the tanks, getting it up to my Apt... doing all that would be difficult for me, the logistics and all. I wish I could just call somebody up and have it delivered. Yeah right!

Oxygen should not be hard to get because you're episodic.  A doctor should prescribe it, and (if you're in the US) Medicare would most likely cover the cost.  And it is the job of oxygen suppliers to do the part you mention -- bringing it up to your apartment.  But even if you go with welding oxygen, unless you have to walk up a lot of steps to get to your apartment, it ain't that hard to lug some decent-sized O2 cylinders once in a while.  There are rollers you can put them on, for example, or some decent sized ones fit in a rolling suitcase.

On 12/24/2024 at 3:12 PM, Kevin Broderick said:

I didn't mention that I got the triptan injectable recently and it gets rid of them in about 3 or 4 minutes. That's a miracle for me but I think that most people know that you can't take that stuff all the time.

If you are using the injectable triptans, be sure to split your doses: https://clusterbusters.org/forums/topic/2446-getting-partial-doses-from-sumatriptan-injectors-imitrex-imigran-etc/

[CHfather]

1 hour ago, JesseRae said:

I wish there was a rule book of exactly what to do and what not to do.

Well, there isn't that, but the core principles are pretty straightforward:

> Use the vitamin D3 regimen to prevent cycles or at least lessen the severity of attacks during cycles: https://clusterbusters.org/forums/topic/1308-d3-regimen/

> Yes, there are other preventives that work for some people at the right (usually high) doses, but D3 ought to be enough, and it has no (or far fewer) side effects

> To end a cycle and potentially prevent one, busting is a choice that many make (click on "New Users - Please Read Here First" at the top of any page here)

> To stop an attack, oxygen is the go-to for most people.  (This is discussed, along with a lot of other things, here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/).  Many people are finding DMT to be an effective abortive (DMT experiences and advice - Theory & Implementation - ClusterBusters).  Triptans in various forms (injected or inhaled) will also stop attacks, but with side effects (see the "basic non-busting information" file above for more on this).

> A course of prednisone, if properly prescribed, will typically hold off attacks during a cycle for some amount of time, and can sometimes (rarely, in the experiences that have been described here) end a cycle

> There are lots of other strategies that can be used to supplement the above, or make some things more effective (caffeine, for example), and to treat the shadows that some people get.  You can read about all that in the linked document from above (https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/