Posted by gary (have been CH patient for 30 years) (188.8.131.52) on December 02, 1999 at 00:24:56:
SEVERAL PEOPLE HAVE EMAILED ME TO REPOST THIS
It is an extract from a major journal/notes/CH research document I keep updating.
IMPORTANT IMPORTANT IMPORTANT:
This stuff is offered as suggestions of what I have done with notable success in dealing with my 30 casse of CH, and is for consideration only by absolutely, properly & professionally, diagnosed Cluster Headache patients.
Frankly - if that doesn't apply to you, it is MY opinion, you shouldn't be screwing around with ANYTHING until you get your problem absolutely sorted out by a neurologist or related specialist who really knows their stuff.
SOME IDEAS TO HELP BETWEEN, AND IN ADDITION TO, MEDICATION
In the following, CLUSTER refers to the entire series of headaches, lasting from a few weeks to a few months. ATTACK refers to the separate, acute headache, lasting from 20 minutes to 2 or 3 hours. PRECURSOR (AURA) is the assortment of pre-pain symptoms in each attack, including vision blurring, twitching, swelling in roof of mouth, etc.
HOT SHOWER - as hot as I can tolerate, over back, chest, stomach, legs and inside of arms. DO NOT expose neck, head or headache-side shoulder to the hot water. Stay there as long as you can stand it (until heat or anxiety from attack drives you out.) Often reduces the attack, sometimes it will stop a mild attack already underway. Be careful of scalding - watch your body, pink is good, lobster is not ! Don't bother if the attack is already moderate to severe. There is a point at which the effect switches from relief to a contributing problem.
The idea is to increase circulation and blood volume in all the rest of the body, away from the headache area; as well as to provide a pain sensation neural diversion. It seems I can tolerate hotter water than normal, while doing this. BUT - sometimes, this doesn't succeed, and the attack continues to intensify. When this happens, the water suddenly seems to become too hot, I begin to feel "feverish", nauseous - GET OUT IMMEDIATELY, or you'll make things worse.
( don't use soap while doing this, or you may end up having to jump out of the shower covered with soap - not funny if it happens while an attack is getting worse)
"WALK AWAY" FROM IT - Sometimes, if I'm sitting (or laying down), and the precursor begins, immediately getting up and going for a brisk walk will stop it. Also a way to help tolerate a mild attack, if it doesn't stop it outright (see below, about walking).
See HOT SHOWER - May still work
ICE WATER TOWEL/FROZEN VEGGIES -
Best of all for icepacking is a large bag of frozen peas or corn. Keep a couple in the freezer ready to go - cheap, easy to handle, dry & the perfect media to shape to the attack area
When ice is the only choice, consider iced water instead. Keep a hand towel in a bowl of water in the bottom of the refrigerator, ready to go. (Travelling ? use a small cooler with water & ice chunks) It works best when I fold & hold it against an area somewhat larger than the pained area. As soon as it begins to warm up - soak & wring in the cold water (which went back in the 'fridge, or has icecubes floating in it)
Hint: get the knack of wringing it out 1/2 way. Too dry & it doesn't work. Too wet & ice water drips down your neck, which is torture during an attack.
Icing is sort of self-limiting - sometimes it seems to stop the attack, sometimes it works as a partial pain relief for "as long as it takes", and sometimes I become too agitated to sit & hold the towel. Even in a bad attack, if I can get the icepack or towel on it for just a bit, it helps for that bit.
PRESSURE POINTS - In front of midear, where your cheekbone meets the ear, you can find a pulse point. This feeds a lot of the attack area. Lay the pad of a finger and push, gently, just until the pulsing stops. You should feel immediate reduction of the pain, in lower level attacks. Don't push any harder than necessary to stop the pulsing, and be sure to use the pad of your finger, not the tip - to avoid bruising. Every 10 seconds or so, release for a few seconds.
Other spots may help; and sometimes you can "rub away" the pain briefly, from a limited area of the scalp. BE CAREFUL of major arterial pressure points, it can be dangerous to press some of them - don't truly harm yourself to ease temporary pain (which is only a passing illusion)! (and that's WHY I'm not specifying them!)
MASSAGE VIBRATOR - Often works on lesser intensity attacks - might be preventing them from getting worse - but if an attack abates, it's always tricky to judge whether it was the therapy or just a milder attack. I have a cordless massage gadget from Brookstone, CHEAP - (there must be dozens similar, check the mall gift shops, etc) It has a round, slightly concave, vibrating disk about 3" in diameter. Holding it firmly against whichever part of the headache region hurts the most at the moment creates a break in the steady pain. I just hold it in place, very firmly, only moving it in response to the pain loci.
It is likely this works as a neural sensation diversion, rather than a therapeutic rubbing action. I think it is probably creating a decoy stimulation to the nerves which "pre-empt" the pain signal. If I take it away, the pain is immediately back. No good on very intense attacks.
(WARNING NOTE !!!!!! I'll leave this in for now, but some people have reported trying the same thing with tissue damage resulting - be very careful !)
MENTAL CONTROL DURING ATTACKS - This takes real practice, but is worth it. Study these ideas before & between attacks - you need to have them solidly internalized. A form of training, actually, so you automatically draw on them in attack.
OK - now we get into the mumbo-jumbo, but bear with me - it might help ! :
1. UNDERSTAND; Pain is a "substantive illusion", it is not tangible - it is the brain's interpretation of data sent it by the nervous system, from stimuli in a source area - designed to be a warning that something is functionally wrong somewhere in your body. Usually, normal pain isn't even felt until AFTER the damage occurs. However, part of the cluster HA scene is that there is usually nothing wrong from a structural or pathological perspective, and the attacks themselves rarely (if ever) do any lasting damage.
This is a critically important distinction for cluster headache patients. (Pain meds do not stop the attack - they either block the transmission of pain data, or prevent the processing of that data.) So, pain isn't an object - it's a perception. Pain is not really the threat in cluster HA - what we might do because of the pain is a risk ! If you understand this, read on -
2. Try to VISUALIZE PAIN AS A COMPLETELY SEPERATE THING FROM YOURSELF - in the way a bright light, bad smell or loud noise is separate - it's there, you sense it in your system, but it's not part of you.
3. LEARN THESE THINGS: ( a mantra of sorts )
a. I have never had an attack that didn't end
b. All pain is felt only a fraction of a second at a time - after that I'm simply remembering past pain
c. I can stand most anything for a few seconds
d. There has never been pain I haven't survived
e. CH pain may FEEL like the tortures of Hell, but it MEANS nothing. [see item 1, above, severe pain USUALLY exists as a warning that we are being severely injured somehow - but in our cluster attacks, the pain is lying to us - CH alone does produce crippling or life-threatening damage - [ but again - this is for people with unquestionable cases of CH, established thru adequate professional diagnosis, without other underlying related problems.]
4. Start developing gimmicks which take your attention off the pain, for even a second - this breaks it up into manageable little pieces. Develop the patience to remain calm & wait it out until those tiny bits stop marching through. SIMPLE - NOT EASY, BUT SIMPLE
As soon as you experience the effect of "Hey - I didn't feel anything for a couple seconds, while "…(whatever you come up with)......." you've got the idea !
Then, just work on inventing as many of those diversions as you can.
A column of fire ants is terrifying - one ant isn't. Find ways to break up the column of "pain-ants", and just wait it out until they've all marched by - must remember there is ALWAYS an end to the parade, even if we can't see it coming.
SOME DIVERSION TECHNIQUES - IF YOU HAVE OTHERS LET ME KNOW, PLEASE !
MAIN GOAL of this is to prevent panic/anxiety. If we can remain somewhat calm, we can wait out the attack without entering that terrifying, out-of-control, world-coming-to-an-end hell. None of this stops an attack - though it might shorten or ease one, to the extent that there seems to be a strong pain-increasing anxiety factor in the attack itself - if not in the overall cluster pattern. (About 1 in 100 attacks, I "lose it" completely - I'm not at all sure if pain causes the hysteria, or hysteria causes the pain. By the time things calm down, I'm too beat to sort it out)
BREATHE slowly, as deeply & evenly as possible. Concentrate on a rhythm.
AVOID brightly lit areas, overly warm areas, or situations where people, things or noises tend to "jump out" at you. All of those contribute to an aggravation of our reactions, when we want them to slow down. If you can't understand why anyone would ever kick a dog or scream at a toddler, try tripping over one during a severe attack ! The point is - don't expect your environment to adapt itself to you. Your job is to put yourself where people, places & things don't make it worse for you, just by being themselves.
LONG-PATH WALKS WORK BETTER THAN PACING BACK& FORTH. (I find the stop & go of pacing aggravates things) Have a familiar, circular "route" planned which allows you to keep moving forward, at a steady pace, BUT don't get too far from home (or from your desk, your car, etc.). You'll need to get back when the attack abates and your may not have any energy left. (remember - avoid bright light, heat or nearby erratic noise, or people/pets which might demand a response from you)
COUNT BACKWARDS ALOUD while walking, from 1000 down. (diversion from pain technique - start at a high #, 100 range is too easy)
Listen to fairly fast-paced CLASSICAL MUSIC, or serious JAZZ, if available (but NOT on a Walkman ! ) - try Public Radio in the middle of the night - usually something appropriate on. Such music has a complex but predictable pattern - become as absorbed as possible in following it, and "hearing" the next note/sequence before it occurs. This is a major mental diversion and can remove the pain illusion for noticeable bits of time. Don't use vocals, pop, rock or country - they're too simple to divert you and the vocals destroy the effect, because you tend to listen to the words, which isn't a strong enough diversion. (Yah, I know. This sounds really off the wall - but JUST TRY IT OK ?, up through about a level 6 or 7 attack !)
Refuse to worry about ANYTHING during an attack, and don't address any issue besides reducing the pain of the attack at hand - if you drift into worrying about "effects" on your day, lifestyle, lovelife or whatever, you will lose the "enforced calm" you're trying to maintain. Your job is to get through the attack, period.
On the other hand - try to get into the most COMPLEX MECHANICAL / ACADEMIC THOUGHTS you can. Compute geometry formulas; recite all those speeches you had to memorize in grade school; run the powers of 2 up as high as you can (2x2 = 4, x2=8, x2= 16, into the millions); anything that really makes you think about something impersonal, completely detached from your headaches & the events around you. If you can do this out loud, even better.
COPING WITH THE CLUSTER LIFESTYLE
Make sure the PEOPLE who have to be around you know, IN ADVANCE OF THE ATTACKS, that the best thing they can do is stay away - they can't help you, and you're apt to start screaming at them if you "trip over them", mentally, verbally or physically. Most people do not have any experience with pain at this level, and will (kindly intentions) feel compelled to "help" - usually offering things which are exactly wrong for this situation. If they've 1/2 a brain, they won't blame you for reacting; but it is frightening & upsetting to them nevertheless - help them help you, by explaining this in advance.
Get into the whole DAY-AT-A-TIME value system; eliminate "should" and "ought" from your attitude about the details of life; realize the incredible gift of having a shot at enjoying life, it's a gift that we did nothing to earn or deserve. Can you be perversely glad that if you've got to have a serious malady, cluster Has aren't so bad ? After all, most people with diseases or trauma that hurt this bad die ! We get those beautiful times in between the clusters !
That is, FOCUS ON THE POSITIVE that occurs in between the attacks; if you're still at the point where you are real upset about how clusters "interfere with your life" - get over it ! Accept them as part of your life today - they are ! Getting into "why me", or "what about tomorrow" will just add to stress & make things worse.
WORK ON FIGHTING THEM, like any other important challenge; BUT LET GO OF THE FEAR, and projection of future problems - then they won't own your life. Maybe we will succeed in eliminating them altogether - Hooray! - but that most likely isn't going to happen TODAY - so make constructive plans by anticipating attacks as part of your "schedule", and leave all the flexibility in time and place that you need to deal with them.
How do you PLAN that way? ACCEPT that big chunks of the day will most likely be "time out", and leave plenty of slack to accommodate. You know you can't get anything done while an attack is on, so don't try! If that only leaves you 2 or 3 hours a day to work at other things, OK, that's the way it is - for today only!
JOB PROBLEMS? This is a bona-fide, potentially disabling disease - be sure your company respects it accordingly, but remember to go through the proper procedures to protect your benefits. Don't wait until it's all on the line, and try to get the supervisor to accept a "headache" as an excuse. Check into your disability coverage. Be practical - if you are an established cluster HA patient, don't get yourself involved in a career with rigid time & place disciplines.
Amazing how many of us end up self-employed, though. Some of us have had to find work that allows the needed flexibility - if it comes to that, so what ? - look at it as a new adventure ! Indulging in the "poor me's" will only add to your problems.
ABOUT SMOKING & DRINKING
DRINKING: I've heard every MD opinion possible, about cluster headaches & drinking, from "no connection at all" to "worst thing you can do" (My feeling is that the opinions given usually depend more on the Dr's own personal relationship with alcohol, than they do on an objective outlook on alcohol's effect on cluster HA.)
All I can say is that my headaches were getting progressively worse, in longer clusters, with shorter relief breaks, while I was still drinking. When I quit drinking, things seemed to calm down a bit in the cluster department - and are measurably better if I look at them over long periods of comparison (years of pattern).
Is this coincidence, a direct result, or do both conditions respond to similar attempts to get better ? I don't think it matters ! Better is better.
(NOTE: 10/98 - strong consensus among clusterheads on the internet: ABSOLUTELY NO ALCOHOL is am absolute rule during cluster periods.)
TOOTHACHE/TEETHING OINTMENTS with 20% benzocaine (eg: Oragel, in supermarket) help with the roof-of-mouth, gums, teeth area. Get the gel or ointment kind - the liquid is cheaper but much harder to apply & keep in place during an attack. You don't want to swallow much of this - it numbs the throat & makes you feel like you're choking, possibly leading to problems. Some people report using lidocaine based remedies in the nostril.
There are many people finding reliable relief from individual attacks by the use of inhaled oxygen. A prescription is required, and it is vital to discuss this thoroughly with the doctor, because normal respiratory therapy levels and delivery systems do no good.
Some people believe the relief is from oxygen's tendency to constrict the blood vessels, while others look to oxygen's effect of triggering the hypothalamus to boost certain hormone productions which might be responsible for stopping the attack directly through neural action.
Effectiveness seems to require breathing pure oxygen only, through a nonbreather bag-type mask, or other delivery system that ensures only the pure oxygen is inhaled. Flow rate required is 8 - 10 liters per minute. It may be helpful to hydrate the oxygen if possible, to avoid excess drying of the respiratory tissues.
It's extremely important to start the oxygen IMMEDIATELY upon start of the earliest signs of the attack, and remain on it until a few minutes after all attack symptoms have released. (Most people are saying a total of 15-20 minutes) Starting too late seems to limit or prevent relief. Stopping too early results in an immediate resurgence of the attack.
Be sure not to use any longer than necessary for the individual attack. Do NOT fall asleep breathing the pure 02 !!
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