Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        Cluster Headache Help and Support >> Cluster Headache Specific >> Coping 
        
(Message started by: georgej on Aug 4^th, 2006, 11:47am)

Title: Coping
Post by georgej on Aug 4^th, 2006, 11:47am

No matter what medications or alternative treatments you use, sooner or later you're going to face a hit with nothing but your naked brain. It's common for a CH'r to panic at times like these, and to act in ways that--while not increasing pain, increase the effects and the perception of pain.

Like anything else in life, experience counts. Most of us who've had these for a long time have had to learn how to cope with a hit on our own. I'm hopeful that what follows may be of use to someone new to cluster headache, and may quicken your ability to take a hit with some measure of aplomb. Try these things--if they work for you, good. If they don't work--well, what have you lost?

First a couple of caveats: This will most likely not shorten a hit, nor will it decrease the actual pain--only the perceived pain. It probably won't work with anything higher than a Kip 8--the intensity is just too high to concentrate on what you're doing.

There is nothing mystical or spiritual about this--it's simply a way to calm yourself and to decrease your perception of pain.

First, accept that you're getting a hit. Denial won't help, and struggling won't help. Go to a quiet, dark place so you can concentrate. You want everything in your visual field to be fuzzy and diffuse. Sharply defined objects, especially red or green LED lights can serve as a metaphor for the focus of pain. Although most CH'rs are not light-phobic, darkness helps.

Sit upright. As you know, it's not possible to lie down. Don't pace. Extremely difficult to do, I know, but it's worth it. Sit quietly.

Begin to breathe slowly, rhythmically, and deeply, whether or not you're using oxygen. This will serve to calm you, and will increase the oxygen content in your blood.

Consciously relax the individual muscles in your face, scalp and neck, one by one. Continue to breathe slowly and deeply.

Inside the pain, there is a focal point--a knifepoint--most likely behind your eye. Focus your attention on it, and locate it.

Got it? Now gradually shift the focus of your attention to an adjacent area on the headache side where the pain is less intense. My personal favorite is just under the skin on the forehead. Your attention will shift back to the knifepoint again and again, but don't let that upset you or discourage you. Focus your conscious attention away from the knifepoint.

Next and last, begin to move in some rhythmic manner. I turn my neck slightly to "click" over the knot that forms at the base of the neck, over and over. Others rock back and forth. One person I know of on this board hits his leg with his fist.

Be calm. Don't think about much of anything, and above all, don't worry.

The result is a trance-like state where the pain still exists, but your attention is less focused on it. Sooner or later, the hit will end. You know this. Remember. There is life between the hits.

Again, this won't end a hit, nor is it a cure--simply a coping technique. I think of CH hits as if they were storms. There's nothing I can do about them, so I've learned to get through them as best I can. Coping by distraction allows me to build a crude little shelter out of burlap and sticks where "I" can hide from the worst of the weather.

I think highly of Charlie's "Dr. Wright's Circulatory Technique" as well. It can work by itself, or in conjunction with coping by distraction.

Let me know if this works for you.

Best wishes and regards,

George

Title: Re: Coping By Distraction
Post by frizzle on Aug 4^th, 2006, 1:10pm

Great advice George!

Thanks. Reminds me a lot of the breathing/relaxation techniques they teach at lamaze too.

Title: Re: Coping By Distraction
Post by starlight on Aug 4^th, 2006, 1:49pm

George--

Great advice and much to be learned there! One more useful thing that goes along with you located the pain point and then shifting focus--ICE--try ice--put ice cubes in the mouth, or even, I have found, put a giant ice bag in the palm of your hand--sometimes it very efficiently tricks the brain and you find the head pain diminishes because brain cannot focus on both sensations--freezing cold and pain at one time. May not work perfectly but it helps a lot.

Title: Re: Coping By Distraction
Post by pattik on Aug 4^th, 2006, 5:31pm

Thanks, George. I've tried relaxation techniques in the past without much luck. But you have added some new twists to it that I haven't tried. I'll give it try next round.

Pat

Title: Re: Coping By Distraction
Post by georgej on Aug 4^th, 2006, 7:52pm

on 08/04/06 at 13:49:23, starlight wrote:

George--

One more useful thing that goes along with you located the pain point and then shifting focus--ICE--try ice--put ice cubes in the mouth, or even, I have found, put a giant ice bag in the palm of your hand--sometimes it very efficiently tricks the brain and you find the head pain diminishes because brain cannot focus on both sensations--freezing cold and pain at one time. May not work perfectly but it helps a lot.

Thanks for your information, Starlight. I'd think this would be a helpful addition for most people. The reason I didn't think of it was that, for some reason, I can't use ice or frozen peas on my head--it causes a tremendous rebound in me when it's removed, and unquestionably extends the length of the hit. Every time I use it, I end up with a powerful shadow that lasts into the next day. Sometimes I use it, though, when I'm at wits end.

It's just a personal idiocyncrasy, I think.

I think I might try holding it in my hand next time, though.

Best regards,

George

Title: Re: Coping By Distraction
Post by TxBasslady on Aug 5^th, 2006, 12:32am

I used to panic. Sheesh, I was trying to get up, trying to get meds, and ice, and wash cloths, and air. My mind would be in such a frazzle, the hit seemed to last longer. By the time I had everything together, what started at Kip 5, was at Kip 8 and climbing.

I did learn to get things prepared in advance....but when I did, the beast found different ways to pay me back.

When I started using 02, I realized that I could sit...instead of pacing and bouncing off the hallway walls. Even with a Kip 5, I could sit...rock gently, and not panic. I could control my breathing to an extent that I didn't feel I was gonna be some doc's science project.

I haven't had a Kip 9+ since last August. That was before 02, and before I realized that it is possible to have a somewhat better handle on the beast.

Excellent post, George. I think it's good for all who suffer to have a chance to see how others come to grips with the pain.

Thanks for sharing... [smiley=hug.gif]

Jean

Title: Re: Coping By Distraction
Post by serendipity on Aug 5^th, 2006, 11:51am

First of all, this is a great thread. I've used relaxation techniques (that I came up with myself through trial and error) and this one is eerily similar to what I usually do. Of course there are times when the pain is so intense that I can't pull it off, but I continue to hope that with more practice I will eventually master it.

This is slightly off-topic, but there's something in george's description of his technique that jumped out at me, because I continue to see it over and over again when reading through the posts here, and that is the statement that a person suffering a CH can not lie down.

I almost always lie down when I have a CH. I find that if I'm lying down I can more easily get myself into a trancelike state.

I do remember that when I first started getting these headaches I would pace, rock back and forth, beat my head against my knees, etc., but at some point over the years I stopped doing those things and figured out that I could manage my headaches better without the distraction of movement.

Has anyone else experienced this?

Title: Re: Coping By Distraction
Post by MJ on Aug 5^th, 2006, 12:00pm

Exceptional post George and well said.

I too chose to be unmedicated for many years.

The only difference for me is I remain concentrated on that focal point of pain and what that perception is while the rest of the world ceases to exist.

Oh and I absolutely must pace. There is no way around that for me.

Title: Re: Coping By Distraction
Post by SophiaK on Aug 6^th, 2006, 12:19pm

I also find that lying down seems to work best for me, I use a heating pad, soothes it. Sometimes ice works. I don't walk because when I do I stagger and afraid of falling, bouncing off walls is not good especially since I take Warfarin. I get very wobbly when hit. Can't concentrate to walk. I do practice a form of meditation to help get me through it and easier to do lying down. Reminding myself it wil pass, it will pass it will pass.

Title: Re: Coping By Distraction
Post by roy21302 on Aug 6^th, 2006, 12:49pm

George,
I note you said you could not use Ice on your Head. If I could suggest there are other places to try, I use them and find that they help distract the pain.
1. Place insides of both wrist onto Ice packs and keep them there, this can become quite painful after a short time, but it seems to help.
2. Place Ice pack on back, between shoulder blades, you need to lean forward, I lean on the edge of a table.
These things seem to change the blood flow or someting I don't know, I'll try anything. I've tried the Head banging on the wall and a lot more too. As you no doubt have, just a suggestion. To Pain free time and beyond---------------------------------Cheers Roy

Title: Re: Coping By Distraction
Post by georgej on Aug 6^th, 2006, 8:01pm

on 08/06/06 at 12:49:14, roy21302 wrote:

Hi everyone.

I'll try the suggestions to use ice on places other than the head. But I gotta tell you, I'm a little gun-shy of ice.

It's the weirdest thing when I use ice on my head--feels better while the ice is there, and the pain seems to subside, even though I feel a bit like a popsicle. Then I take the ice off, and two minutes later, no matter how long I've had the ice in place--wham. And it's not just the pain--the tearing and sinus blockage starts all over again, and the Beast is rocking and rolling all over again. The shadow that results from using it even for a short time is a real mind-melter, and it lasts for hours.

And heat--heat's worse.

I should mention that I usually have plenty of time to fiddle around trying things during a hit--and I've pretty much tried everything, except bungee jumping. My hits are not nearly as frequent when I'm in cycle as those that others get--one every day or couple of days--but they typically last two or more hours, peaking seven or eight times. Real nasties that leave me completely worn out, with a prolonged shadow afterward. The ones that Flash calls "dirty" hits. Nearly all my hits are "dirty".

Lots of time for head-banging--which I've done quite a bit of in the past. I don't bang my head anymore. Mostly because it never seemed to do anything except make my brains slosh around.

I still do my fair share of pacing when the hit's over a Kip 8, not to mention groaning, swearing, and whining. And I simply CANNOT lie down. I truly wish I could. Serendipity's right--it would make it much easier to enter a trance-like state.

We all get through these things as best we can. It's fascinating to see how others do it, and I've picked up some good suggestions from all of you.

I'm hopeful that among all the things that we and others do to cope, that there will be some valuable help here for people new to CH. They are the ones I most empathize with, because I remember, clearly, how it was when I had no experience with them. No way to cope when the Beast came to visit.

I hope people continue to contribute to this thread, and more coping techniques that others use will come forward--there is a universe of experience here.

I believe that learning to cope is as important as finding the right doctor, or the right medication. If CH is part of who you are, you have to learn to deal with it.

I think I'll change the title of this thread to "Coping", and try to leave it wide open to more contributions.

Thanks, and best regards,

George

Title: Re: Coping
Post by kevinpix on Aug 7^th, 2006, 12:08am

Breathe in counting to five, breathe out counting to six. Works everytime, gives the brain something to occupy itself with, I guess. Thanks for the informational read!! Have a painfree week!!!!!!

Title: Re: Coping By Distraction
Post by TxBasslady on Aug 7^th, 2006, 3:42am

on 08/06/06 at 20:01:09, georgej wrote:

I believe that learning to cope is as important as finding the right doctor, or the right medication. If CH is part of who you are, you have to learn to deal with it.
I think I'll change the title of this thread to "Coping", and try to leave it wide open to more contributions.

I told George how I thought this is an excellent thread and I shared a bit of my experience with CH.

George is very experienced with CH...and has many more years of pain under his belt, than I. Of course, this isn't about who knows more...or has more "time" in, so to speak. This is him telling how he's learned to cope, and his encouragement for others to share their thoughts.

As I was responding to a post on another thread, I realized the driving force that allowed me to be able to cope with CH. It's not triptans, it's not 02, it's not the ice I used so much that I thought my eye was frozen forever.

It's here, this website. I have learned so much from so many. I have witnessed and experienced so many good things that one would not think possible from having this horrid pain.

My ability to cope comes from knowing that someone has it much worse than I. It comes from knowing that someone cares about my pain. It comes from the comraderie, and the eagerness others show to help when someone is down. It comes from the many tears I've shared with others who suffer. It's the hugs and the feeling of being in the presence of Angels.

All of these things provide the strength I need to cope with CH. I see these as gifts.

Jean

Title: Re: Coping
Post by LadyElaine1 on Aug 7^th, 2006, 7:02am

Great Advice George, and Jean !

Title: Re: Coping By Distraction
Post by sandie99 on Aug 8^th, 2006, 5:11am

First of all, great posts, George. :)

Just like Jean, part of my coping techniques is to just come here. Lots of great advices (like in this thread earlier) I've found right here. Like Red Bull.

George, I'm going to recall your tips the next time I'll get a visit from the beast. I used to panic a bit when I got hit. Now I'm more relaxed about it... if ch comes, it comes. I think that knowing what will work helps a lot dealing with the beast.

on 08/05/06 at 11:51:21, serendipity wrote:

I almost always lie down when I have a CH. I find that if I'm lying down I can more easily get myself into a trancelike state.

That reminds me of the days when I got in the middle of an important lecture at university... I coudn't leave and it was impossible to sit still. Yet I had to force myself... and force myself to concentrade on the topic. That was difficult. But I managed because I had no choice. Aguess one can cope with nearly anything when one has to. And live even with ch around.

Sanna

Title: Re: Coping
Post by CHvsTN on Aug 8^th, 2006, 9:20am

George,

What you're advocating here is the first stage of self-hypnosis - a technique I've been using for the last 10 years to control my CH pains. What you are describing is achieving the alpha/suggestible state of mind.

If you take it a little further you can, in effect, abort attacks by fooling your brain into believing there is no pain. The effectiveness increases dramatically as you become better at hypnotising yourself.

I've managed without any medication since my clusters started - with the exception of being woken from REM sleep with Kip 10s - In which cases I have no defence - What you said about the lack concentration definitely applies.

I believe that we can all beat the beast - even Kip 10s that sneek up on you while sleeping, if we get really good at self-hypnosis.

There is a lot of information on the web explaining how to go about hypnotising yourself and there are even (inexpensive) software packages available that let you put on headphones, get comfortable, and start the program running - you don't need to know how it works.

I have more info. on self-hypnosis. If anyone wants it, drop me a PM.

Best regards,
Ritchie.

Title: Re: Coping
Post by BB on Aug 12^th, 2006, 5:24am

Hello all

Just wondering how does one cope with KIP 10 ?

Is it at all possible NOT to reach for strong pain killers when one hits KIP 10 and it keeps going and going and going and the normal abortive medication didnt work?

Annette

Title: Re: Coping
Post by georgej on Aug 12^th, 2006, 7:51am

on 08/12/06 at 05:24:07, BB wrote:

Hi Annette,

I think that Kip 9 & 10 is where things break down. But, in most cases, reaching for powerful pain medications does not work either. Most are ineffective, in my experience. Early on, I was given a lot of pain medications, including a morphine drip at one point. Didn't do much good.

Brewcrew was recently hospitalized for DHE treatment with a Kip 10 that lasted six hours. It was the only thing that finally aborted it.

Fortunately, very few of my headaches ever reach Kip 10 anymore. I think that it is possible to keep most them from ramping up that high by working to cope early in the hit. I find that the perception of pain is as important as the the level of pain itself--fighting can make things worse.

But these things do happen, despite our best and most strenuous efforts. In the case of a Kip 10, hospitalization with something like DHE treatment or the application of opiates to the point of inducing unconsciousness may be the only option.

Best wishes,

George

Title: Re: Coping
Post by BB on Aug 12^th, 2006, 10:40am

Thank you very much George for your advice.

The neurologist told my DH the same thing, he said one can develop " pain syndrome " by being fearful of the pain itself and start panicking at the thought of an attack.

However, he has had it really bad last 2 days with 4 attacks per days all reached KIP 10, where he would be rolling, crying, almost convulsing on the floor for an hour or more. Imitrex and 02 worked to stop the drills in the head but not the burning. He would tell me that the drill has stopped but the whole left side of the head continues to burn.

He is on prednisone and verapamil and just started on valproate as well.

The fact that all of the attacks reach KIP 10 is really making him depressed and fearful.

Annette