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        New Message Board Archives >> Jan-Mar 2003 >> What to do in between
        
(Message started by: KMeagher on Mar 3^rd, 2003, 12:15am)

Title: What to do in between
Post by KMeagher on Mar 3^rd, 2003, 12:15am

Hi all.

Looking for some advice on what the best course of action is between the clusters!

Mine come rocking in on waking and make the mornings on a scale of unbearable to walking dead - fairly unpleasant all round. Often by the afternoon I am virtually headache free (unless I think about it). If I'm lucky I get that post near death's door high. But inevitably the next morning brings it on again.

What I want to know is what the stuff beyond drugs should you do in the lull to help avoid the seemingly inevitable relapse over night. I've tried rest, acupunture, massage, oesteopathy, mild drugs, sleep and exercise. Seems it matters not one jot what I do. Anyone got any clues!

(I never get much beyond 8 on Kip Scale - but I have a 4-5 day cluster at least 8 times a year - perhaps I should just be grateful eh!)

K

Title: Re: What to do in between
Post by Charlie on Mar 3^rd, 2003, 1:09am

Hi and welcome aboard. Sorry you had reason to find this place. I was episodic too, before my long continuing remission. Your description fits mine to a T.

I found nothing much to prevent them from occurring but I found sleeping in my recliner often would eliminate one nocturnal attack. My advice on alternative therapy is to go easy. I stay away from these guys who have surefire cures and the like.

What follows is a technique I learned from my old neurologist who made a point of the fact that this has nothing whatever to do with psychic stuff or mysticism. He told me it took some concentration and a little luck. It worked and afterwards. I always gave it a shot. Most of the time it was worth it. Here it is:

Dr. Wright's Circulatory Technique

This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.

When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.

This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.

This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.

When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck - Charlie Strand

Title: Re: What to do in between
Post by KMeagher on Mar 3^rd, 2003, 2:42am

Wow Charlie - thank you. How the heck though!!!!

Not sure I have the brain power to actually achieve that - have never done any meditation but I do believe in mind over matter to a certain extent.

But when I go for a gentle walk tonight on the beach (very lucky aren't I) I shall give it a thought - try to make my feet warm instead of my forehead! I figure I'm still gonna wake with this demon back in place tomorrow no matter what but anything is better than overt quackery or long term medication as far as I can see - especially when I'm not as debilitated as some folk get and can pretty much operate normally though in very bad mood!

Thank you again for the time you took to share - much appreciated. Will let you know if I can make it work!

Kristin

Title: Re: What to do in between
Post by KMeagher on Mar 3^rd, 2003, 2:45am

Charlie - one more question just to see if I can get more puzzle pieces to fit.

You don't by any chance suffer from back pain? (I've had a lumbar laminextomy but had the headaches before and after I had the op)

And here is a strange one - you don't by any chance suffer from a burning sensation on your tongue do you?

Have no idea if that's linked but its some other non treatable neurological dysfunction I've got!

Kristin

Title: Re: What to do in between
Post by Charlie on Mar 3^rd, 2003, 5:34am

Hmmm. I'll trade my remissed CH for all of the above. I have epilepsy and I clobbered my lumbar some time ago. The back pain is not related. Some anti-seizure drugs are used for CH but the only drug I'm on now is Lamictal. Damn tricky thing and it's a new one for me. The CH has been gone for 12 years. I took Dilantin and Primadone at the time the CH disappeared but it began while on those as well. I really don't think the drugs are related.

Here is some more about the technique. It's something I don't often add as it's unpolished. It rambles but it may help. Add it to what I posted before and maybe it will make more sense:

I’m asked now and then to add to my description. I’ll try but it will sound odd: What I’ve written is probably five times what I got from Dr. Wright. Here is what he did: He stood up by his desk and held out his arm and asked me if I could make my hand warmer with circulation. He said it’s not strenuous but internal, but not some kind of psychic or meditation thing. It isn’t meditation, yoga, introspection or something you picture or imagine. It’s physical but not some kind of Popeye flexing thing. It is a concentration on circulation. I don’t really know how to describe it but let me try this:

This isn’t what’s happening but maybe if you think of it as an internal flexing or expanding of the artery into the arm while at the same time literally pushing blood into or filling the arm as if it’s an empty vessel. I used to pretend blood was pushing blood down my neck while looking at my shoulder and trying to feel my circulation and at the same time, pushing it over the shoulder and into the arm. It’s nuts, I know, and I’m dead sure that this isn’t what’s going on, but it seemed to help when I started. It’s second nature now and I can do it while typing. My left hand gets very red and very warm. You can do it with both arms and legs it you want. There is one man who wrote in to guest book long ago, that he stood barefoot on a concrete floor and it would often relieve the headache after a short time. My theory is that the body tries to keep the feet warm with increased circulation. I think this is also the idea behind exercise. Oxygen is needed to work the muscles and there is just so much blood to go around. Maybe this draws just enough to other areas to ease the pressure in the head. This may also be why we get the posts that sex can sometimes seem to be helpful. This certainly does affect circulation. Anyway, to me, cold water, exercise, or anything requiring more circulation, seems to be worth trying. My experience is that my “pushing” blood is the most effective and easiest way.

Linda has tried this when not getting hit. It was something I never considered but it makes some sense. I try it now and then just to make sure I can still do it. It’s easy when I don’t have to fight the pain at the same time. The other thing is you cannot let up. It will not work if you give up before the attack ends. It will never work if you stop. My attacks would average about 20 minutes, sometimes a bit longer. If I used the technique I could often halve them, sometimes knock them out in 5 or 10 minutes and now and then kill them in less than a minute. That was what I lived for. I never stopped trying as I knew it was possible and it worked....for me, 8 times out of 10...it never occurred to me not to try. I would have to regroup a bit during this as it’s not possible to have that much concentration. It is possible not to completely slack off, however. I never gave up. When it works, it’s sudden. It seems to drain away in a few seconds. My suggestion is to not let up immediately when the pain goes. Wait a minute or two. It never comes back until the next attack though. Dr. Wright said that young people have the best luck because of better circulation. Maybe he was right. This is the best I can do for now but keep trying. The damn thing does work.

For me, this is something that I got almost immediately. I used it only a few hours later in a restaurant and it worked in less than 10 minutes the first time. What a thing it was. CH was still a horror but its grip on me was greatly lessened. I had a fighting chance, and I usually won the battle.

Charlie