Hi all,
I don't suffer from CH, nor do I know anyone who does, but reading up on the subject is enough for me to really appreciate how common and terrible the condition is. My sympathies to anyone with CH - you guys must keep very strong.

Anyone my reason for posting is because I saw a TV programme on pain a while back, and one guy had 1st degree burns and was on the road to recovery. During treatment, they had him play a simple "virtual reality" game (with full 3D goggles etc.), and it drastically lessened the pain he was experiencing. I was wondering if a similar albeit less expensive version could help with CH. Obviously the idea is to divert attention away from the pain as much as possible, and VR apparently is a good way of doing that.

Not sure what others think! It's not the full experience, but perhaps a large screen, decent stereo headphones and 3D glasses could help?

My first reaction was: with our best abortives, it's possible to kill an attack rather quickly whereas, with burns, the pain is an issue of hours/days. In such a situation, the approach you mention sounds useful.

No. 

Just.....no.

Best wishes,

George

Hi.   Your post brought to mind those Buddhist monks setting themselves ablaze and not even flinching in pain.  But those guys had probably 20+ years of mind training every day.  I've been practicing mindfulness meditation for years, but can tell you that for anything greater than a minor attack it is counterproductive to use mindfulness (i.e. making the physical sensation the object of meditation) or any form of meditation for CH attacks.  Instead I focus on being mindful of my emotions or feelings during an attack, noticing these, and this helps in not getting "caught up"  in the pain and helps avoid unhelpful thoughts like "I cant take it", "when will this end" etc.  But this isnt really a distraction, its more about being present and accepting. 

I'm sure like many others, rather than a distraction per se, I end up going through a routine (on the few occasions when I cant abort with O2)...pacing, humming to myself, heat the compress, apply the compress, remind myself it will end, and then repeat.  I think a lot of CHers also use pain diversions i.e. create a painful feeling somewhere (bang your head, prick your hand with a needle, etc.) and that gives a (very momentary) relief to the pain of the attack (since we apparently cant feel excruciating pain in 2 places at once?).  I use to do this (I would dip my hand in hot water, almost scalding myself...ah...the good ol' days).  But I dont think this is the kind of "distraction" you are thinking of.  To be honest, with a bad attack, I cant imagine that anyone can really concentrate or stay focused enough on any one thing, virtual reality or whatever, long enough to have a positive effect.  I think it would be really really hard.  For me there is nothing I can do other than my routine (and I've tried lots of things..).   

So for me, the best distraction is the process of sucking back some O2 :>) 

Cheers

twinbee wrote on Jul 17^th, 2011 at 6:03pm:


You need a hobby.

        Potter

I know your intentions are good, and I thank you for that.  Ideas and approaches from outside the community are always welcome.  Who knows where the next effective treatment will come from?   

In all seriousness, though, you really wouldn't want to go through an attack.  Not even once.  There's nothing in the experience of most people that I can even compare it to. 

I've tried, off and on, over the years to explain what a cluster headache attack is like to people who've never experienced one.  It's futile.  We have no common ground.  Nevertheless... 

When you see descriptions comparing it to a white-hot nail being driven into your temple for an hour or so, these are not exaggerations.  Your eye turns red and drips, your nose runs, and you sweat.  You can't sit still.  You can't lie down.  You'll do anything--anything at all--to escape the burning point of the pain.  Anything that distracts you from getting through the next minute...and the next...and the next is a nightmare, and can't be tolerated.  It just can't.

An attack changes you.  Your reactions to things are not normal.  You're like an animal in a trap, struggling with panic.  After going through a few thousand attacks, however, you can learn to suppress some of your most extreme reactions, and stop screaming and hitting your head against things.

Like many people here, I can't stand to have people look at me, touch me, or even be around during an attack.  If I could tear into the earth and pull it over me, I would.  It's only with the most strenuous, exhausting effort that I can endure the thing one more time and get through to the other side.

Yet some of us here go through this thing several times a day for weeks--or a lifetime.  Imagine that.

Clamping a thing to my head, listening to loud sounds, and watching some sort of action unfurl in front of me during an attack would be the most horrifying thing I can imagine doing to myself during a hit. 

Not possible.  That's all I'm saying.

All the best,

George 

AussieBrian wrote on Jul 17^th, 2011 at 7:28pm:

DITTO

Hi George,
Yes, I had some kind of idea how bad it can get from reading say, even the home page earlier. And as you guys say, leg cramp is a walk in the park compared to a KIP 8, and how terrible that must mean a KIP 9 must be (10 - shudder). I'm guessing each level up is an order of magnitude worse, and similar to the Richter scale for earthquakes.
Slightly off topic, one way to compare the levels may be to say 10 mins of KIP 5 is as bad as 1 min of KIP 6. And 10 minutes of KIP 6 = as bad as one minute of KIP 7. etc. etc. I'm not sure if those figures are accurate, but it may make it easier to relate between the different levels (for whatever that's worth).

I must add that in my first post, I said "first degree burns". I actually meant *third* degree burns, which are of course much more serious, and I know the guy who had the VR treatment was in agony without it, hence me thinking there was a small chance it could help for CH. But obviously, from what you guys have said, it probably won't work for CH, and as wimsey1 said, maybe that's because it's in/near the area where the mind thinks from, so VR won't help.

wimsey1 wrote on Jul 19^th, 2011 at 8:40am:



Great point Lance.  In saying mindfulness/sitting is counterproductive during attacks I was thinking more about controlling the attack itself.  But quite right...I've also found that the high-flow breathing is a perfect opportunity to get present with breathing, and as you say it beats watching the clock, which is in a sense what I mean by not getting "caught up" in the attack, so for me it is where mindfulness has helped to some extent. I also think for any clusterheads interested in mindfulness, the O2 time offers a good opportunity to practice.   Overall I also find more pronounced benefits of mindfulness during the periods in between attacks.  In the old days I use to be constantly worried about what is looming next etc. rather than just living my life during these periods.  Often I even completely forget about the CH.   When I dont have strong shadows I can even sneak in a 30 minute sitting w/out the relaxation that often accompanies it triggering an attack.

Ya I once looked into and tried "binaural beats" on the headphones during hits.  Useless!  I had the same pain, plus this annoying ring in my ears


Regards
Stymie

Stymie wrote on Jul 21^st, 2011 at 5:50am:



Just as a postscript, in 22 years of this I've yet to meet in person another clusterhead i.e. someone who would understand what an attack is like (though of course do not run around talking about it, so...).   But last week, at a friend's going away party held at a local expat pub here, an acquaintance of mine was pressing me on why I wasnt having any beer.  Finally, I said "I get headaches from beer".  He asked "what kind" and I said "clusters" (and thinking of course, here we go again with trying to explain it...).  He said "oh...sh&#".  Turns out he had recently read a Newsweek article about them, and knew quite a bit, saying words like "hypothalamus" and phrases like "you dont really get them from any one thing do you?" that were refreshing music to my ears.   He then said "I guess you dont like talking about them" but I told him, in this case at least, I dont mind at all.  So I bought him a beer and we spent a while talking about CH, oxygen, mushrooms and whatnot    

What an appropriate place to post the text of our now famous Colleague Letter:

A note for those who know a C.H. sufferer:

Why should I read this?

Someone you know has probably given you this note to explain a little about a condition they suffer from called Cluster Headache Syndrome. It is likely that before you met them, you had never heard of this condition, which, after all, affects less than 1% of the population.

Because it is so rare, sufferers often feel isolated, especially through misunderstanding by those who do not fully appreciate its effects. This short explanation is intended to help with that.

What is it?

The term “headache” is very misleading. Your friend or coworker is not experiencing the typical symptoms of familiar primary headaches, such as Migraine and Tension. Cluster Headache (CH) has a prevalence of approximately 69 cases per 100,000 people, although it may be much higher. The cause and cure of Cluster Headache Syndrome are unknown. Cluster Headache sufferers fall into two categories: Episodic and Chronic. Episodic sufferers experience headaches in clusters for a period of typically six weeks to six months and will go into periods of remissions typically lasting from six months to 3 years. Chronic sufferers experience no periods of remission lasting longer than two weeks in the period of one year.

A CH attack is unilateral (one sided). Pain may begin around one eye, “Like a nail or knife stabbing and piercing” the eye, or as if someone “were pulling out” your eye. It may be accompanied by a tearing or bloodshot eye, drooping eyelid, dilated pupil and nasal congestion or runny nose on the side of the attack. It can radiate from the eye to the forehead, temple, ear, cheek, jaw and neck on the same side. The pain of a CH has been described as piercing or boring and so excruciating that most victims cannot sit still and feel compelled to rock in a chair, walk back and forth, or bang their heads against something. The pain is so extreme that Dr. Peter Goadsby, Professor of Clinical Neurology at University College, London, and the worlds leading researcher on CH has commented, “Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they’ve had a worse experience, they’ll universally say they haven’t. Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anesthetic once or twice a day, for six, eight or ten weeks at a time, and then have a break. It’s just awful.” Most CH victims experience these attacks 2 to 10 times daily. The pain quickly escalates from no pain to unbearable pain within five minutes. The pain subsides in the same manner. Attacks can last anywhere from 30 minutes to 3 hours or more.

Those bald facts, though, do not do justice to the pain experienced. A more sinister name for a CH is “suicide headache” - for obvious reasons. More than half of all sufferers have considered this.

A curiosity of Cluster Headache Syndrome is that both the individual attacks and the clusters themselves can have an almost metronomic regularity - attacks starting at a precise time of day are typical.

It is a headache, in that the pain is in the head, but that is really where the similarity ends. The name itself leads to confusion, as people immediately think of it as something that can be cured by taking a pill, or by thinking of it as a migraine.

CH sufferers experience some of the most intense pain known to the medical field. There are many medications available to help CH patients manage their condition. Medications fall into three categories: Preventive (medications which are used to abort the cycle, such as steroids, Verapamil, Lithium, etc.) Transient (medications used to help while the preventatives take effect, such as Prednisone and other steroids), and Abortive (medications which are used to abort the headache, such as Imitrex, oxygen, etc.) Narcotic medications are not recommended as effective management for cluster headaches.

How is your friend affected?

This will vary enormously, and, surprisingly, you will almost certainly never witness a full-blown attack. Seeing someone in that state can be quite terrifying. Sufferers are reluctant to allow anyone else to see them at that point, for three main reasons: first, with family and friends, it is simply to avoid them having to see something which, as they are powerless to help, is very upsetting; second, no-one is keen to be seen in a state where they will scream, cry, pace, hit their head repeatedly and generally be uncontrollable - dignity does matter; and three, coping with the attack is wearing in the extreme, and having to cope with other people around is just not possible for most.

In addition the cumulative effects of repeated attacks, and the medications used, can lead to tiredness, irritability, and an occasional loss of temper (particularly when it is suggested that things can’t possibly be that bad). Depression is quite
common. Some individuals lose their jobs, and even partners and homes, as a result of CH. That said, because having to cope is part of the nature of the condition, most sufferers will “get along” - they have to be quite strong to survive.

Most can be helped by medication, but, because the cause of the illness in unknown there is no cure. The medications often mask or reduce the symptoms, but do not remove them.

It should be noted here that doctors are often poorly informed about Cluster Headache Syndrome and misdiagnosis is very common. Some GPs are reluctant to prescribe certain drugs, even when they are known to be effective.

What can you do to help?

When an attack hits, there is nothing anyone can do, unless the sufferer requests help. The best thing is to stay well away. Afterwards, a quiet word is probably a good idea. You may find the sufferer will talk about what he goes through if you ask - he may appreciate the opportunity to explain. Sympathy will be appreciated, certainly, and, if you are working with someone, make sure that you do not give any reason for them to think that you blame them for the inconvenience they may have caused. Most will be keen to get on with things, and repay any efforts you have made to cover for them, if the nature of the work allows.

Things to avoid saying/doing

Most sufferers are happy to discuss how things affect them, and how you can best help them, but you will find your conversations very short if you say any of the following:

“I had one of those once” - no-one ever has one cluster headache

“My aunt has migraine too” - migraine is nothing like a CH.

“Can’t you just take a tablet and lie down?” - No is the answer, most sufferers cannot lie down during an attack.

“Just pull yourself together and work through it” - suggest that, and step back several paces!

This is not rudeness, but simply the result of experience. Sufferers know that sometimes it is simply better to ignore remarks such as these and leave the person in ignorance. If you have read this far, though, that probably doesn’t apply
to you!

More information

To learn more about this disorder, you may wish to visit the following links:

O.U.C.H.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

New England Center for Headaches
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Cluster Headaches
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Michigan Head/Pain & Neurological Institute
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

The National Headache Foundation
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Thank you for supporting your friend. This can be a very frightening disease and your encouragement and understanding is an important and vital factor in helping to manage CH.

Original draft of this letter written by Simon Bower for
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

George

Your description of a CH hit just made me shudder as the memories of my last cycle came flooding back , but a non CHer still wouldn't get it .

twinbee

not to mention all the above reasons for your idea not working , some of us get very photosensitive in a hit , so shining light into our eyes during a hit .....well it would be kinder to strik us with a sledge hammer.

Thank You for your thoughts

God bless

Nigel

I gave birth and had an episiotomy and was stiched up without any pain meds. I'd do that every day rather than have a cluster.