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Tony Only

Studies or articles about PTSD and related symptoms in cluster headache ?

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I am looking for studies or good articles about cluster headache that address the psychic burden of this condition. 

Article that would explain the fear, anxiety, panic attacks for some that we may go through. I think PTSD is most often mentioned as a possible affiliated diagnosis but the whole mechanism is rarely explained.

There are people who are not taken seriously with these psychiatric conditions or these might be used as weapons in work life etc. People who try to work during a cycle may have to prove they are not under influence of alcohol (or other drugs) due to cluster symptoms or PTSD.

I will attempt to do a little write up in finnish that cluster patients could use and share for their GP, boss, friends and family but if you could link to something that's already there or that could help thank you very much.

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I'm not aware of any articles reporting on PTSD specifically for clusters.  There is some criteria if the dx of PTSD applies to clusters .  Dr Larry Schor brought this up while presenting at a CB meeting.  Technically he is correct although there is a visceral reaction to his perspective. 

 

https://www.researchgate.net/project/Study-Title-Cluster-Headache-Investigating-severity-of-pain-suicidality-personal-burden-access-to-effective-treatment-and-demographics-among-a-large-International-survey-sample

 

He has presented data several times but i don't believe he has published in a peer reviewed journal

 

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Posted (edited)

[Edited: I see Pebbles' mentioned Dr. Schor while I was writing. Just a quick, small point: While Dr. Schor has not (as far as I know) extensively published results from the survey in peer-reviewed journals, he and others did publish findings related to oxygen and other acute treatments in a very thorough article in Headache (which I think is peer-reviewed). This article makes a further very compelling and thorough case for oxygen, and it's very important that the medical community keep being reminded/told about the importance of prescribing O2. https://headachejournal.onlinelibrary.wiley.com/doi/10.1111/head.13473]

Dr. Larry Schor led a very big survey-based study a few years ago that looked into (among many other things) the psychological effects of CH. He speaks at CB conferences, so I'm thinking he might have something prepared, or could maybe share some of his findings with you.  I will PM you his email address.

The booklet I'm attaching, "Living with Cluster Headaches," is anecdotal, and so might not be helpful, but just in case...

Living with CH - 8.5x11 - 9-15-14.pdf

Edited by CHfather
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Thank you both ! These are marvellous links and great PDF ! After aiming to help just a few this looks like a bigger, more organized work on the subject would be definitively needed here. What you gave are great help for that ! I will also contact Dr. Larry Schor - sounds like he is just the man to consult on this.

I am all for anecdotal. I work as an "Expert by Experience" in Horton's syndrome (cluster headaches) in Finland. I give my personal experience to healthcare or face to face to another cluster patient so it would be used to help others. Some phenomenons in our communities will never make it to studies but it can be crucial to hear about them. 

Here's a bit about this program in english although this article covers mental health / substance abuse

https://www.mielen.fi/experts-by-experience/

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Posted (edited)

That's a lovely program, Tony.  It's fair to say that a conversation I had with Bob Wold almost ten years ago created a big shift in my life, and I'm sure that you and others in your program and doing the same for many people.

Here is another CB document that was created to give people a better understanding of CH.  It's kind of old now, but I suspect maybe some of it might still be pretty usable. 

Also, somewhere there is a famous letter that was created for that purpose. Ah, here it is: A link posted by Denny.  http://www.clusterheadaches.com/wwwboard/messages/63158.html?fbclid=IwAR26DY-Zyy6hVnPkL-YkuVMcXDEiN6cEBAV0r3H8OUvlj9SE6fQKyBSDe54

20 Facts brochure 8-24-13.docx

Edited by CHfather

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5 hours ago, Tony Only said:

I am all for anecdotal. I work as an "Expert by Experience" in Horton's syndrome (cluster headaches) in Finland. I give my personal experience to healthcare or face to face to another cluster patient so it would be used to help others. Some phenomenons in our communities will never make it to studies but it can be crucial to hear about them.

REMARKABLE Tony... thank you for being part of that enlightened attitude toward health care....most clusterheads spend years just trying to find someone who understands...and it can get pretty lonesome. Many never find a health care professional who does...so this is just awesome....

Does your system provide any type of training for communicating your experiences most effectively? Do you collaborate with a colleague(s) who have taken different approaches to treatment (meds, mooshies, diet, etc) for the most effectiveness with each patient?

regards

jonathan

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On 4/17/2020 at 2:27 AM, jon019 said:

Does your system provide any type of training for communicating your experiences most effectively? Do you collaborate with a colleague(s) who have taken different approaches to treatment (meds, mooshies, diet, etc) for the most effectiveness with each patient?

Hi Jonathan, thank you for your kind workds. Our training lasts for 12 months, it's built around everyone's own life story and the medical condition and recovery from it is in the center of this story - to help others who are still struggling with same issue. We practise presenting our life's story many times, and possibility of telling it in different places and situations with different length. Even a course of performing arts is included ! The best teacher is doing the work when we graduate though.

We collaborate with each other a lot but as an EbE we do not speak out (=advice) about treatments since we are not doctors. Our job is to tell our personal experience living with the condition and not advice about possible treatments, when we work at a hospital.

Understandable course of conduct but also a balancing act for me, since I am also a patient, peer support, sometimes a friend, member of an association etc. And treatments that saved my life are illegal here but also part of my life's story.

I think this kind of training and use of us patients in the heathcare is benificial for everyone, especially in cluster headache not well known at all.

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