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Episodic cycles & cortisol

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#1 Sat, 15/07/2023 - 10:42
Nicky Smith
Last seen: 9 months 2 weeks ago
Joined: 09/03/2023 - 12:07

Episodic cycles & cortisol

Hi all, gutted to have missed the conference, unexpected events meant I just couldn't get there sadly. 

I have a query about cycles and cortisol but some back ground first. 

I was diagnosed with Episodic CH in 2015 aged 35, having previously been a regular common migraine sufferer since about 12 years old till mid 20s. I had initially had what I thought was a return of migraine, but worse than I'd ever remembered, waking me up in horrific pain, shorter than migraine but intense unbearable pain like a screwdriver through my eye that I just couldn't cope with, I'd rock like I was crazy during attacks (still do) and that first episode lasted 12 weeks most of which unmedicated & peaking at 2 attacks a day 3/4am then 4/5pm.. My GP recognised it was probably cluster headache prescribed zomig spray and I was referred to Neurologists. CH then diagnosed, was given pager no. For hospital and prescribed verapamil but didn't start taking as episode had stopped. 

I then didn't have an episode till 2019, about 8 weeks immediately recognised and started low dose verapamil & used zomig spray. They never stopped the attacks or lessened the pain, the spray just seemed to make it a bit shorter.

my last episode was Feb 23 to April 23. This time seemed worse than last but not as bad as the first, treatment was verapamil high dose which just made me feel awful (my BP is already naturally quite low so they made it super low) alongside the pain of attack and zomig spray did just as before, didn't help with pain but seemed to shorten attack.

I'm quite aware that CH is related to our circadian rhythm, and it would now seem that my episodes are roughly every 4 years (not similar seasons though summer 2015, Nov 2019 and Feb 2023)

My first question is have any episodic suffers noticed a pattern in their episodes? 

I'm sure you've all frustrating been told at some point when your episode starts "oh you must be stressed" -- by someone trying to be helpful. We know stress doesn't trigger it but can make an episode worse.

This leads to my cortisol question.. As somone who unfortunately has suffered some very stressful periods in life and probably rather unhealthy could be classed as "chronically stressed" I have always maintained that bizarrely my CH episodes only seem to start when I've had a massive reduction in stress in my life.. (I'd joke that my body didn't know how to cope without tons of cortisol pumping through it)

But having looked back over the last 12 years properly and whilst looking at my prescription record, I've noticed that it appears to be that I come out of a very stressful time in my life, get very ill with chest infections requiring antibiotics.. Then follows a CH episode.

Has anyone noticed any experiences with either episodes following illness or reduction in stress?

Im keen to see if there are any links experienced by others? 

Ive also been looking at adaptagon suppliments to support lower stress on the body as I know chronic stress is not good... But I'm a little petrified that if I meddle with my cortisol levels too much I might trigger an episode!! 

Sorry for long post! But hopefully makes sense. 

Nicky Smith 

ECH sufferer 


Sun, 16/07/2023 - 11:45
Last seen: 3 weeks 4 days ago
Joined: 13/07/2018 - 20:38

Hi Nicky, 

I was initially diagnosed with CCH in the early 1980s, over time this transitioned to very definite ECH.   In the early days I do recall thinking there sometimes seemed to be connection between times when stress suddenly reduced (e.g. going on holiday etc.) and the onset of attacks, however, there were also times when it didn't happen so there was no definitive correlation.  As I became completely episodic I didn't ever notice any such link.  Over the years I've come to think that just when you think you are getting a handle on the condition, or spot a pattern, CH decides to change its methods anyway,  just to keep you on your toes.  These days I try to keep an open-mind and almost expect the unexpected.

Sun, 16/07/2023 - 20:19 (Reply to #2)
Nicky Smith
Last seen: 9 months 2 weeks ago
Joined: 09/03/2023 - 12:07

Thanks Gary that's interesting to hear, also such a long time to be afflicted with them --. 

I had a look back through my prescription records for an occupational health call and that's how I noticed the timings etc.  Always live in hope that will be my last episode, but like you say it does seem to try and keep you on your toes, and I feel so much for anyone who suffers chronically. I think unless you've experienced it, or watched someone have an attack "cluster headache" just really doesn't sound that bad to people.

One of my sons is 14 and has started having headaches, I've not said anything to him but I worry so much that it might develop in later life, so wish its cause could be more understood scientifically. My grandmother apparently use to suffer terrible migraine, I often wonder if she suffered undiagnosed CH bless her.

People's patterns and experiences leading up to attacks I think could really shed light on any common themes that may have not yet already been considered. 

Nicky Smith 

ECH sufferer 


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