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When do you know your cluster cycle is over?


fella1234
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...when episodic....6-8 wks on/off (23 yrs)...I knew cycle was over when I got a MASSIVE hit after a tapering off of multiple daily hits....a bell curve

of remarkable consistency. I CRAVED that gut wrenching hit....being willing to bear what I  knew was the "end".....

Best wishes....tis a journey...the way is long and tortuous.... but the light at the end is there.... AND....when you get there...and you will...indescribable

Jon

 

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Episodic over 25 years now and the majority of my cycles did not end any way special. 

For me it took a while to grasp it but I know when my cycle ends because it is like a fog has been lifted. Unscientific I know but I just feel “normal” again. 

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  • 7 months later...

This is my  3 third cycle and i had CH free periods of 6 years, i have the same experience as Jon019, the last one is a Massive hit and  and after that the headache remains but not as in a attack, i think they call it shadows here, and the skin on my head on the right side is very sensitive during a cycle, when this sensation is gone the cycle has ended. 

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On 12/15/2017 at 10:55 AM, mit12 said:

Before busting I was 3 to 5 days a week and I knew that I had a couple days relief comming after a monster hit, one that is all you can handle plus a little bit more. 

My last cycle was like that, one massive hit and I was done. I thought I got my massive hit last week but nope, trying to bust now with Psilocybin.

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  • 4 years later...

For me I am in the middle of a new cycle.  Was in remission for over 2 years.  I am re-learning the tips and tricks to managing pain.  

I think I know the end of a cycle is coming when the pattern becomes less predictable and the headaches become more erratic.  I hate the uncertainty but know im one bad attack from them disappearing for another year.

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Not always, but, on a lot of my cycles in the past; I have gotten a really weird lower kip attack that would last a solid 24 hours. Not like my normal attacks that last an hour. Pain in the same spot, but, not a typical CH attack due to the length. Probably like a kip 5, but, can't sleep, and with it being so long, it's brutal. That said, I always know when I get one of those, that the cycle will be done once I get through that one. 

Other times, when I haven't had that, it's been like others described. I just feel like a fog has lifted, and just sort of know. I'll usually wait 1 or 2 weeks before doing a beer test. 

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  • 1 month later...

I'm in my 3rd cycle since 2019, this one is very similar to my last one which was December 2021/January 2022. I was able to end that with Prednisone. However I think we started the Prednisone taper to early (2 weeks into cycle) and since ove been off it doesn't seem to have worked, it gave me a week off during the taper but they came back once done. I'm now about 6 or 7 weeks into the cycle. The headaches have become more prevalent during the mid day which is something new. Any idea on what signs I should look for to know when I'm coming close to the end? Everything is so new to me so I have no idea what I'm looking for. 

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44 minutes ago, EmpiresBurn said:

it gave me a week off during the taper but they came back once done

I dare say this return of the CH is unfortunately a more typical result with a prednisone taper.

44 minutes ago, EmpiresBurn said:

The headaches have become more prevalent during the mid day which is something new.

This change in timing/behavior from cycle to cycle is also pretty common, something to always be braced for.

44 minutes ago, EmpiresBurn said:

Any idea on what signs I should look for to know when I'm coming close to the end? Everything is so new to me so I have no idea what I'm looking for. 

Personally I'm in the group that has found the attacks to just ramp down and taper off at the end, but as reported above, plenty of others are known to experience one big one right at the end, signaling the end of the cycle. Here's hoping you don't experience any big one like that, but if you do, there's that potential 'this is the last one' silver lining to be hopeful about.

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16 minutes ago, EmpiresBurn said:

Everything is so new to me so I have no idea what I'm looking for. 

Since it's new to you, and you don't mention what you are doing to prevent or stop attacks, you might want to take a look at this file for an overview of treatments: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   Although the file's title refers to "non-busting," there is a summary of busting protocols at the end.

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5 minutes ago, CHfather said:

Since it's new to you, and you don't mention what you are doing to prevent or stop attacks, you might want to take a look at this file for an overview of treatments: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   Although the file's title refers to "non-busting," there is a summary of busting protocols at the end.

I'm currently in the process of getting Emgality. But other than that I have...

80mg Verapimal 3× Day as Preventitive. 

100mg Sumatriptan tabs (Daily when in cycle) although I almost never take the full.tab I usually break them in half and take that nightly so I can sleep through the night. 

That's all right now.

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...not sure why a pred taper would be too early 2 weeks in....more likely too late. typical for hits to return after end of taper, so pred is a transition med to (hopefully) break cycle while a prevent (like verapamil) kicks in. 240 mg/dy of verap a low dose...reported sweet spot is 480 mg/dy of immediate release (sustained release lower chance of success). many go much higher...which scares pcp docs but is well tolerated by clusterheads...

....pure OXYGEN (no concentrator) at flow of 15-25+ lpm, with a non-rebreather mask and proper breathing technique (there are various worth exploring) is the best abortive with none of the side effects or rebounds of triptans. an energy drink (2 oz 5-hr energy drink type avoids all the sugar and volume) or other high caffeine delivery method enhances effectiveness....and sometimes works alone.

....a headache log concentrating on cycle lengths, timing (seasons, travel, etc) number/intensity of hits, diet, activities, and weather that seem to coincide with hits can be most helpful narrowing down triggers and enhance planning/warning for next cycle. just be careful..... correlation does not necessarily mean cause...

...there is nothing funny about CH but this:

1 hour ago, CHfather said:

You're fighting a monster with a popgun right now.

...was amusing and TRUE! oral triptans are mostly worthless except for very minor hits and maybe sleep aid (Benadryl or melatonin could help there) but daily use could lead to rebounds or cycle extension....

...i am being redundant for emphasis....this all in the file @CHfather already referred...DO STUDY!

Edited by jon019
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6 hours ago, EmpiresBurn said:

100mg Sumatriptan tabs (Daily when in cycle) although I almost never take the full.tab I usually break them in half and take that nightly so I can sleep through the night. 

I think I do understand this if you're taking them to fend off an expected attack an hour or so after going to sleep, as I've seen others report success in this context with the tabs that otherwise are typically found to be too slow-acting.

 

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1 hour ago, jon019 said:

480 mg/dy of immediate release (sustained release lower chance of success).

Agree with @jon019 that 240 is a very low dosage. I am on the extended release, and I have always wondered if it has done much good. I did notice a few minuscule changes after taking it for a bit like less attacks when in cycle but that's about it. In the beginning, I was scripted with 160 a day (a joke). I upped it on my own (not recommended) anyhow at one point I upped it to 640 and started experiencing heart palpitations so I backed down to 480. Even now, I don't believe that the verap has had much bearing on my prevention. A newer member on here mentioned that they were trying to avoid pharmaceuticals and I completely agree with that approach, it scares me to know that I am ingesting a substance that messes around with my heart. Nothing that is scripted to us thus far has been developed specifically for cluster heads (at least I don't think), most have had the underlying real approach to migraine, minus the D3 reg designed by good old Batch (a cluster head himself).  I am now feeling the need to question my neuro as to why he scripted the ER and not the IR but at the same time I can't help but to know deep down that it's due to a lack of knowledge regarding the disorder:(  I suppose what I'm beating around the bush about is the simple undeniable evidence that some of the best reported medicine has been from nature e.g., shrooms that just grow in the forests, LSD that has been created from mold on rye, seeds from naturally occurring plants etc... To sum this response up and be hopeful, I want to say that I do believe there is a treatment that doesn't need to include foreign ingredients ..    

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17 hours ago, Bejeeber said:

I think I do understand this if you're taking them to fend off an expected attack an hour or so after going to sleep, as I've seen others report success in this context with the tabs that otherwise are typically found to be too slow-acting.

 

Yes I take them as a preventative prior to sleep. If I don't I just end up getting an attack about 2 hours after falling asleep and taking the Sumatriptan anyway. 

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  • 2 weeks later...

Im currently going through an episode. My last full blown attacks were 23 years ago. I thought I had beat this thing. During the years I occasionally

had some shadowing but no clusters. Once you know that shadowing feeling that will always freak you out. I forgot and assumed it would be easier to get medical attention today. Nope ....... same old process. 

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