Raising some awareness.

Discussion in 'Off Topic Area' started by Dean Winchester, May 6, 2014.

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Have you heard of this condition

  1. Yes I have heard of it but that's it

    6 vote(s)
    23.1%
  2. I have heard about it and I am familiar with the condition

    1 vote(s)
    3.8%
  3. Never heard of it

    19 vote(s)
    73.1%
  1. Dean Winchester

    Dean Winchester Valued Member

    Not one for this sort of thing usually, I tend to prefer something more proactive.

    However this is a condition that is not only rare but is often either misunderstood or unheard of.

    So I thought I'd do a quick survey of MAP and see if anyone had heard of it, unfortunately I had a slight hiccup as I can't seem to figure out how to add a poll, which I though MAP did?

    Anyway the condition I'm referring to is a type of primary headache which falls under the group of Trigeminal Autonomici Cephalgias, it's usually known as Cluster Headaches but has also acquired the nickname of Suicide Headaches.

    So at first I'd like to know Mappers have you heard of it and if so do you know what it is?


    I've recently become involved with a group who supports sufferers of this condition and I'm doing my own little bit if ad hoc casual research into people's attitudes and knowledge about it.

    Your help is much appreciated.
     
  2. Ben Gash CLF

    Ben Gash CLF Valued Member

    Well yes, obviously, but I'd imagine I'm not a representative sample ;)
     
  3. Mitch

    Mitch Lord Mitch of MAP Admin

    Nope, never heard of it.
     
  4. Dan93

    Dan93 Valued Member

    Hi Dean,

    I will admit I know nothing of the condition, would you mind explaining more about the condition once you get more feedback?

    Cheers

    Dan
     
  5. Dean Winchester

    Dean Winchester Valued Member

    No problem. :)
     
  6. Dean Winchester

    Dean Winchester Valued Member

    Forgot about you lol
     
  7. Simon

    Simon Administrator Admin Supporter MAP 2017 Koyo Award

    I didn't know the medical term, but have heard of cluster headaches.

    My boss suffered with them. I'm sure he said they lasted a month and came at exactly the same time each year.
     
  8. dormindo

    dormindo Active Member Supporter

    Never heard of it, but due to the name and my a & p courses from years ago I can hazard a guess at some of the problem. I'd like to hear more when you're ready, Dean.
     
  9. Dean Winchester

    Dean Winchester Valued Member

    As this might take a while to get going I'll post some more information.

    One of the key features of CH (Cluster Headaches) is extreme and debilitating pain on one side of the head often around the eye or temple, they can last anything from fifteen minutes to three hours. Generally it is always the same side but some people do report it switching sides on occasion between attacks. The word headache is rather misleading as it is far more painful than a typical headache or even migraine.

    The attacks can be anything from once a day, a couple of times a week or even multiple attacks per day, these attacks are either episodic or chronic.

    Episodic attacks last more than a week, some go on for months, and then fall into remission for more than two weeks.

    Chronic is where there is no pain free remission in a year or the remission lasts less than two weeks, basically constant pain in one form or another.

    There is a very interesting factor about CH is that you can almost set you watch by the attacks, some people know when theirs will come even down to the time of year, day and time of day. For example every year from March till May two attacks three times a week at 7am and 2pm, or with a little more variation such as between 7-8am and 2-3pm.

    Alongside the seasonal and circadian aspects there can also be triggers such as petrol fumes, coffee etc.

    I'm still waiting on exact figures but I've been told that suffers are 30% more likely to take their own life.


    This brave lady recorded herself having an attack, as MAP has a wide range of members I'll say that this shows someone in extreme pain and may be uncomfortable for some people to watch.

    [ame="http://www.youtube.com/watch?v=wRXnzhbhpHU&sns=em"]Cluster Headache attack - YouTube[/ame]
     
    Last edited: May 6, 2014
  10. Pretty In Pink

    Pretty In Pink Moved on MAP 2017 Gold Award

    Never heard of them, and would like to stay as far away from them as possible :p
     
  11. Dean Winchester

    Dean Winchester Valued Member

    I forgot to add, it's been described as the most painful condition known to medicine.

    I'm not wishing to disparage other people's pain who may have other conditions, chronic pain is awful and everyone has their own ways of dealing. I'm only trying to put across the severity of what those with the condition deal with.
     
    Last edited: May 6, 2014
  12. Dan93

    Dan93 Valued Member

    Thanks Dean,

    That was truly horrible to watch, in fact I didnt make it to the end of the video...

    I assume there is medication available for this condition? I will show this to my boss when he moans about a migrane again!
     
  13. Dean Winchester

    Dean Winchester Valued Member

    There isn't a cure, only drugs which have a preventive aim or an abortive one. Even saying that though they aren't always effective, some people even go as far as needing surgery, deep nerve stimulation and god knows what else.

    High flow 100% oxygen is one of the best abortives but as you can see from the clip it won't take it away completely. Some poor people just have to ride the storm out without any relief.
     
  14. Dan93

    Dan93 Valued Member

    Nasty, If you can pre-empt roughly as mentioned in your first post when you will have a attack would being sedated not be an option?? Not sure I would want to endure that on a regular basis...

    My heart goes out to those who suffer with this condition.....
     
  15. Dean Winchester

    Dean Winchester Valued Member

    I think it would need to be heavy stuff but what sort of quality of life that would mean for people I don't know.

    When it's happening a number of times every day or every other day months on end then I doubt it would be feasible and probably dangerous too considering some of the medication are calcium channel blockers which lowers blood pressure.

    They also have what are termed as shadows which are like an attack but on a lesser scale, you get miserable and sick of them but they aren't at the level where there's a desire to shoot yourself.
     
    Last edited: May 6, 2014
  16. Grass hopper

    Grass hopper Valued Member

    Wow, thanks for showing that. I'll keep that in mind for the future so I can recognize an attack like this as something more than hysteria, but pain so bad it makes people actually cry out.

    Is hitting where the pain is a good idea? It seems counter intuitive.
     
  17. Johnno

    Johnno Valued Member

    I've never heard of this.
     
  18. Smitfire

    Smitfire Cactus Schlong

    This is a new one on me. Sounds, and looks, horrific.
     
  19. Lad_Gorg

    Lad_Gorg Valued Member

    Heard of it. Still one of those mystery diseases, but that may be due to the limited amount of research done on it.

    There appears to be genetic (I'm actually speculating that it's more on the epi-genome level), neural, and endocrine elements at play. It's an interesting disease from a medical stand point, especially because of it's predictable time of onset. But definitely not something that I'd wish on anyone.

    But I'm curious what type of support the group you mentioned is providing for the suffers?
     
  20. Heikki Mustola

    Heikki Mustola Valued Member

    I have heard of it, there is a guy on youtube who has videos of his cluster headache attacks. He is in huge pain, I feel bad for him and anyone else having this. It's a cruel fate to suffer from this. I hate headaches, cant even imagine life with this
     

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