your story

[Monica]

Hello

I am currently writing a book about Cluster Headaches.  I started writing it while in this latest cluster period.  I have run away from this part of my life for so long, now I feel like the only way to find peace with it is to document it.  I am sending this out to the ClusterBuster community to ask you if you would like to share your story?  I would love to have a book that not only shares my journey but many others too, so that for those of us that find this forum difficult to navigate through, they can open a book and find a connection to others as well as our personal remedies and routines that can aide in the readers journey.  Not only would I like this book to speak to sufferers, but our caregivers and friends and family that want a better understanding of where we come from.

So please, if you are interested, I would love to connect with you.  

Thank you,

Monica Paisner

 

[CHfather]

Monica, this booklet doesn't do all of the valuable things you are aiming to do, but it does have brief Living with CH - 8.5x11 - 9-15-14.docxpersonal accounts from people with CH.  This was created more as a way of educating family/friends/co-workers/etc. about CH than telling people with CH what they already know.

(I didn't think the link was going to get pasted right in the middle of that sentence, but it seems to work.)

Edited April 21, 2022 by CHfather

[Monica]

Thank you CHfather, I read the booklet you sent.  For a long time, I did not want to talk to, read about or even think about Clusters when I was not in my cycle.  I found it to trigger me and put me in a depression.  Reading the booklet is very triggering and I'm sure for others, reading other peoples stories can only add to their own story.  But I still think there needs to be a book in the stores and in the libraries that gives people the chance to sit with this devastating world we live in.  If your interested, I would love to talk with you to maybe get your take on your world and how you've been able to navigate your way through this website with so many people.  

Let me know,

Monica

 

[CHfather]

Monica, I'm story #3 in that booklet, so my situation is different, and I'm probably not material for what you are thinking of writing.  I wish you the best with it.  

[DJ Cluster]

Hi Monica, I must say I'm somewhat inspired by your post, because tonight I took it upon myself to help myself, with the wider goal of helping the whole cluster community.

It can be stressful to convey our pain to people, but awareness is hard to raise otherwise! Projects like this can be cathartic, but also could literally save lives, so it's a win win situation!

*I've always wanted to be a filmmaker, but since my diagnosis in March 2020 I've felt this is no longer possible. However, tonight I also learned that sadly, the actor Daniel Radcliffe also has suffered with CH's for many years, and maybe it's a pipe dream but at least I'll have someone to send my screenplay to if I ever write one! (Fantasies are healthy, as they give you hope!)

Best wishes and thank you for your post,

David, London, England