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Nray

Waiting on my 2nd cycle

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Hello, my name is Nick. I started my first cycle June 13th 2020. The first cycle started in June and lasted 24 days the attacks came at 9pm every other day for the first week and then they came every day for the last seven days of the cycle. I have been dx with episodic intractable cluster headaches. I am pain free at this time but want to know if anyone has any information about the onset of their next cycle and was there a difference in the length and duration of the next cycles that come or could it be just one cycle and then stop forever or is this just the beginning of a life long journey. Any replies would be appreciated and I am ok with bad news so too speak there is no need for false hope is all I’m saying thanks again.

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Welcome to the community Nick!

Unfortunately, there aren't any answers to your questions that are set in stone!  

However, the Beast does morph over time......mine were just a few weeks with mostly late evening hits the first couple of cycles but by 1998 they had progressed to 20 to 26 weeks weeks with an 18 to 19 month remission period, and the vast majority of my hits were nocturnal.

The good news is that you have a bonafide dx just months after your clusters prevented......7 years from onset was the average when I was dx'd in 91..mine began in 84, so I fit exactly!

And, you've found us and believe me, collectively, the active members here know more about clusters and their treatment than most docs!  

Many excellent treatments available to you in the way of oxygen to treat individual hits in cycle, anti inflammatory vitamin D3 regimen that you can take all the time to lessen frequency and severity, and for some it even seems to prevent cycles......and other remedies you can read about in the clusterbusters files and busting stories section of the forum!

Although it can vary, many of the clusterheads I've known for a long time have been dealing with the Beast for 30+ years...36 personally and I'm 73....but, like I say, you've got a leg up on us old farts with what's available to manage clusters today!!

Read and ask questions! Be well!

Dallas Denny 

 

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Year 23 here but life is better now. GL on your journey NRay, this is the best place to be!

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22 hours ago, Nray said:

I have been dx with episodic intractable cluster headaches.

I don't think they're "intractable" unless they fail to respond to all conventional treatments, and I'm pretty sure that's not the case.

It's possible that you won't have another cycle for a long time, or at all.  More likely that you will, of course.  Quite possible that the various CGRP meds will be better developed for CH by the next time you have a cycle, or another effective treatment will have been discovered/approved, and it will turn out to be easier for you than it has been for all the previous generations of people with CH. For a general overview of ways to treat CH, you might want to look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   You'll probably forget most of what's in it, but if/when  you do have another cycle, you'll know it's there.

Asking myself if there's anything you should do now.  I'd say to seriously consider starting some version of the vitamin D3 regimen (there's link in the post I linked you to above), so you are building up your D levels.  As far as anyone knows, there aren't any bad side effects from following that regimen in a disciplined way.  You don't say whether you received any prescriptions (maybe the diagnosis came after your cycle was over). You will read about triptans in the post above: they have their uses.  Because the number of triptan devices (injectors or spray containers) that you can get at any time is limited, more than a few people fill their prescriptions for triptans when they are out of cycle so they have a "stockpile" when/if they need them. This is just something to consider. They're expensive. And you might never need them, or never really want to use them.

 

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Hi Nick,

Unfortunately you will have to take into account that this can indeed be a lifelong adventure. I once read a study about this and that is what I remember:

  • An early onset has a higher chance on an early termination. If you get it later in your life, then it will probably also take longer
  • Many doctors will say it goes away once in later 40's or early 50's. There is indeed a tendency to longer remissions (several years) once over that age but from what we see here in this forum, many come back in their 70's having attacks again after having 10, sometimes 20 years of remission.
  • After many years, most patients come to a point they learnt to deal with it very efficiently and so they do not need help anymore from doctors or specialists at later age

If I look at myself, I got my first migraine attack when 12 years old, now I am 51 and still no signs of stopping. So that is 39 years and that as a man ! Migraine is called a women's disease !  Then at 43 yrs old, I got suddenly plagued with Chronic Paroxysmal Hemicrania , the female version of CH.

So I would say, never take these pain free periods for granted and do not count on a "magical recovery" but think seriously about a strategy on how to deal with this the best you can.

All the best !

siegfried

 

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