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Topic: A Story from Mr. Cluster- Part I (Read 484 times) |
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ray4903
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A Story from Mr. Cluster- Part I
« on: Mar 23rd, 2006, 9:57pm » |
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A Little On Our Friend – Mr. Cluster
I get cluster headaches. It is an affliction. A malady. A curse.
To say that cluster headaches are a form of headache is like saying that a hurricane is like a kind of summer Midwestern storm.
The current medical literature , including such prestigious institutions as the Mayo Clinic, state very little as to why and can only offer possible remedies when they occur. Bottom line- there is no known cause and no known cure.
Many people who suffer from this pain have given it a name – ‘The Beast”. A nice short one syllable word that at least ascribes a possible name to the demon that is behind it all.
For any who have never experienced it, it is impossible to describe. To those who have them, it is sickeningly easy to describe, unfortunately, in rather great detail.
Cluster headaches alter your life, change your perception, challenge your will and literally bring otherwise strong people to their knees.
I am a male, so I never have and never will experience childbirth and I currently have all my limbs so I have never experienced any form of amputation, however I sincerely believe that the pain of cluster headaches rivals or exceeds the pain associated with the former two situations. Indeed, some of the scant few articles about cluster headaches have likened the pain level to that.
Some have called cluster headaches, the ‘suicide headache’ and I can attest to that validity. There are times, unfortunately quite numerous, where the ‘beast’, quickly and efficiently, drags you into the depths of his dungeon and right to the very edge of a deep precipice where below all hope seems to be lost.
For most, thankfully, we cling to that edge fiercely, fighting in a struggle that sad experience tells us that it WILL end, even if only temporarily, and a new battle can be waged at a future date.
Although armed with knowledge of no truly known cause, once these ‘visits’ start, one is forced to review every miniscule detail of your own personal life in a frantic search for a reason, a way to change something that will keep the ‘beast’ in a permanent cage. It is like a defense mechanism to hold hope that one can find a possible antidote rather than completely capitulate and allow pure fate to travel it’s course. You look at what you eat, what you see, what you smell, how you walk, how you sit, how you breathe, what everyone around you is doing. You actually reflect on the kind of soap you use, your shaving cream brand, what color socks you wear or wore a year ago. Is your belt too tight, your shoes too shiny, the doorbell too loud, the sky too cloudy, too bright, current barometric pressure too high, too low, everything.
It is the search for the Holy Grail- that will never be found.
Some say it is a ‘problem’ with the hypothalamus which is a supervisory center in the brain. It normally accounts for about 1/300th of total brain weight and regulates body temperature, blood sugar levels, metabolism of fats and carbohydrates and sugar levels in the blood. It is a region of the brain that regulates sleep cycles, pituitary gland activity and other autonomic nervous system functions. It is that small microchip in the engine in your skull that makes a lot of things work – or not work properly, as in the case of cluster headaches.
What makes it work, or more importantly, not work properly, is really not known. Whether or not a ‘malfunction’ in the hypothalamus is what actually causes cluster headaches is a theory. It is the proverbial ‘mystery wrapped in an enigma’. Isn’t that just great, peachy keeny. I mean you break a bone, we know what it is. You get a cast put on , a painkiller, be nice to it for 6-8 weeks and then it’s okay. Maybe stiff in cold weather, but generally okay.
See Part II next.
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ray4903
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Re: A Story from Mr. Cluster- Part II
« Reply #1 on: Mar 23rd, 2006, 10:00pm » |
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You will go to sleep after a perfectly ordinary day in a perfectly ordinary world where not much was different that day than the previous one or the one before. But something has changed; only you don’t know it—yet. You will awake, be wakened, at 2:30 or 3:30 or some ungodly hour and things will not be so ordinary. It is not from a casual flung arm from your spouse rolling over, or a loud bang from outside somewhere in the distance, it is the ‘Beast’ come calling, he has awakened and he wants you to join him- again.
On the very first time this happens, you wonder, was it a beer too many, that piece of chocolate, maybe the sip of the new expensive red wine, your wife’s new perfume-- but damn what a headache. I mean Jesus, what a headache, never had one like this before. You have to get up. Walk around, take some aspirin, hell take 4 aspirin, walk some more, grit teeth, shake a bit, wander in the dark feeling the dagger, the pulsing pain. Shit, this really hurts. In 45 minutes, maybe a bit less, a bit more, it goes away. As the shadow drifts away, you want to wonder what the hell was that, but you’re just damn glad that it’s gone—and you’re tired, you’re exhausted, but it’s gone- back to ordinary. It felt as if you just stubbed your big toe on that damn metal bed corner 30 times in a row and it really really hurt bad – real bad- but a lot worse.
That little sadistic pain fairy got the wrong house, wrong bed, wrong person- shit happens.
But as they say, ‘not exactly’. No, not at all. You don’t know it- yet- but something has changed. It is no longer an ordinary day or ordinary life.
Every sufferer has their own description of the pain, like we all know the right ingredients of a special recipe, or just the right way to turn the faucet to stop that pesky drip. For many, including myself, it is like an ice pick being driven repeatedly through your eye (only one eye, mind you, and always the same blasted eye). Many times it goes very very deep to the back of your skull into your neck. It is like a root canal through your optical nerve, or maybe childbirth through your eye socket or amputation (slowly) of your right leg, above the knee, of course.
After that ‘first time’, then it really starts, that journey through hell, and you never even bought a ticket and don’t know how long of a ride it will be- but it will be bumpy and full of potholes, detours and curves—and crashes, big ugly twisted crashes. You don’t know it yet , but the next time, maybe 5 months or a year , maybe two from now, when you get that particular ‘wake up call’ at 2:30 or 3:30 a.m., you will know exactly what it is and it will strike terror and dread into your heart.
You will know that the ‘pain fairy’ found exactly the right house, the right bed, the right person. And, you will want to cry.
The next day, after that very first night, you will probably feel okay , for a while. Tired perhaps, a fleeting thought of maybe you have a brain tumor. But, give me a break. It was just a really really bad headache. The mind works in mysterious ways so don’t be a pansy, a wuss, it’s over. Then, maybe at 2 or 3 p.m. that afternoon, on that not so ordinary day, you feel a slight twinge, maybe in your neck or even in your face muscles, just a twitch mind you, and a slight pin prick in that same place as last night. Hmm, weird.
It keeps happening and in a few short minutes, the pain starts, and I mean THE pain, like last night except you have been awake so you get to feel it in its entirety and after that 30 seconds of wonder you realize that something is wrong, terribly wrong. This goes way beyond a ‘what the hell?” because it already has you. The beast in gnawing at your eye, that same eye, chewing through your skull dropping you to your knees, but you cannot stay put, you cannot lie down and just close your eyes. Some instinct forces you to move, walk, stumble, try to run away, maybe crash into that wall over there. You are scared, you are terrified. It has to be that brain tumor – the thought you casually dismissed a few hours ago. This is real pain, a torture, something has gone completely haywire in your body, your brain, some type of physical payback for all the sins of the world has finally found a resting place – in your head. You don’t have any medication, never even heard of anything except aspirin but right now all you think about it is that it has to end. You can’t stay alive very long with pain like this.
The human body was not built to withstand it, you are red-lining your modest family V-6 brain at the Indy 500- and something has to give.
Then it starts to subside, relief floods over you, then a very sharp stab, a reminder it may not just yet be through with you, but it is going down, ebbing away, taking a part of you with it. You think about that story you read about some civilizations never wanting to have their picture taken as it steals a part of them away and you think that your tolerance for such unbelievable pain must have a finite quantity in some hidden personal reservoir – and you just used up way too much in the last 30 minutes.
See Part III next
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ray4903
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Re: A Story from Mr. Cluster- Part III
« Reply #2 on: Mar 23rd, 2006, 10:06pm » |
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This is not good. Something is definitely wrong here. Cluster headaches? At this point, you have never ever heard the phrase, never heard anyone mention it, talk about it, never read anything, never saw anything on the 60 Minutes TV show. Headaches, well, sure, everyone knows about that. Migraines, yes, of course, I know a little about that, heard some people talk about it. So, that is it, I just had two really bad migraine headaches. Really bad. Oh man, those poor folks who have had them a long time. So, off to the local drugstore, get the biggest bottle of Excedrin Plus Plus and whatever else the brightest labels say to take for migraine headaches. Okay, now we are a little bit ready. Oh yeah, I remember something about triggers for Migraines like alcohol, wine, chocolate, a bunch of things.
Let’s see, okay, none of those things for a while, for sure and how about the idea that you noticed that your sinus ran when you had the pain? Better get some sinus pills . And how about stress: you have been worried about some things at work, the traveling coming up, the big meeting, where to take the wife for your anniversary, getting the house painted, fixing that damn fence out back, inviting the new neighbors for dinner, calling back your old buddy who left you a message a week ago. Yup, have to attend to those things, cross them off the last- not worry about them. Less stress, take it easy and just cruise for a few days. Not let things get to you. Give the brain a little rest, some much needed R & R – this was a signal – slow it down a bit- switch off the ole brain, put the worry machine in the garage, watch what you eat and drink and do. Maybe too much time in front of the computer screen , yeah, way too much eye strain- that’s probably exactly it- the pain in right in my eye- so too much strain there- voila ! Case solved as Inspector Closeau would say, a few days off , easy on the eyes, don’t read that book in bed and everything will just run it’s course and be just fine.
6:45 p.m.- on the way home from the grocery store – two nice T bone steaks prime for grilling, weather is pretty decent, a couple baked potatoes, and a great salad. That should be good, right? and good for you. Protein, fresh veggies, simple. No dessert or alcohol tonight, just a nice healthy relaxing dinner. Gotta stop and get gas as you pull into the self service. Nozzle out, gas cap off and pull the handle. The slight fumes hit you and seem to go right to your brain, a muscle in the back of your neck, the same side, twitches again and you think you feel a shadow rising just above your right eye, Not another one?? Think hard, is it real or just a memory of the earlier one. Thinking about it makes it happen or so it seems and the pain starts to blaze, like throwing a match on a barbecue that has been over doused with starter fluid – except there is no “Whoosh” just the stab, the growing pain. You eyeball has to be coming out, someone is taking it out , manually, and you stand there and pump gas while your head feels like an invisible man has the white hot poker and is slowly pushing it through your eye – and he is smiling.
You drag yourself back into the car almost unable to tolerate the pain. Should you drive? Did the gas fumes trigger this, maybe something in the grocery store- ya know those lights were really bright and you had to read that one label in small print and maybe strained your eyes. What the HELL IS IT!. You close your right eye because the pain is so great and drive, get distracted, think of something else except this pain. Be careful you are driving with only one eye. You almost want to laugh but you really want to cry, no, what you really want is for it to just stop. Okay, the last ones lasted about 30 minutes- glance at the clock, it’s 6:52, so just hold on till what, say 7:20 and it will be okay, it will go away, just 30 minutes, like the long run where you just told yourself another half mile and with legs burning and breath gasping you made it- you can always make it – time heals all.
7:15- and you drove endlessly around your block, for some reason not wanting to stop but to keep in some type of motion, keep busy, thoughts on something else other than the pain. Looking at the clock repeatedly, willing it to go faster, believing that time is the answer – it can only last so long and sure enough you feel a slight recession- is this just a ‘fooler’ or is it really going away. Yes, you feel the drain starting like water in the tub swirling down and away taking the pain with it.
7:27 – all is good, like nothing ever happened except you feel like hell but so damn relieved that there is no pain not much else matters, the steak dinner does not seem to have the same appeal as it did an hour ago- your appetite is not that eager, but well, you have to eat. Thank god I have a propane barbecue because maybe the fumes from starter fluid could cause another headache. Oh yes, we’re okay now. But shit, that’s 3 today already about 4-5 hours apart, so it is now 7:30 so maybe, what like 11:30 or 12:30 tonight for another one ??
The thought of going to sleep tonight is beginning to get almost scary- yeah, very scary.
The steak dinner was actually very good and you willed whatever protein and vitamins it all might contain to be a medicine, to make your mind right and to feed whatever beast in your brain wants and to keep him happy – very happy.
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ray4903
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Re: A Story from Mr. Cluster- Part IV
« Reply #3 on: Mar 23rd, 2006, 10:08pm » |
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The idea of going to sleep looms and the possibility of what happened the night before is way more than troubling. You watch a little television, half the time with your right eye closed for no reason other than you think maybe you should give it a rest or that it might be a ‘trigger’. You are exhausted from what has been a not so ordinary day and you think that your body must be going through some type of hell from all the pain you believed you have endured over the last 18 hours. Every little thing matters, the way you sit on the couch, maybe a nerve in your back is causing these things, maybe the angle of that lamp over there on the table, maybe maybe , maybe.
Okay, 12 a.m. , just really cannot stay awake any longer. Maybe a few aspirin before bed and get the bottles of aspirin and sinus pills ready- those stupid child-proof caps off and ready for action, all set up in the bathroom in the bedroom, cup for water nearby. Off to bed, pillows just right , back straight, Now relax, get some sleep, good sleep, no pain, wake up in the morning and all will be good. Time heals all.
Close eyes, think of sleep- but it does not quite work that way. There is a foreboding, a fear that is there- helplessness like a lamb to slaughter. You are nervous, no strike that, afraid- like the night before your first public speech before a large crowd only this time you cannot just picture then all sitting there stark naked and all you think about is possible pain and then you must stop thinking about that because, maybe, just maybe, that can cause it- the power of the mind.
Eventually you fall asleep and right on cue as if the alarm clock was set years and years ago, the pain wakes you from that so sought after sleep. This is not just the pain fairy- she brought her whole family to visit tonight – and they all brought their Mikita 14 volt drills loaded with the quarter inch bit and are very very busy boring right into that right eye and not trying to be neat about it. Covers back, right to the bathroom, pain just whistling now grabbing the aspirin bottle. Shit, this is bad, way bad, starting to almost panic. A thought – maybe grind the aspirin up, yes we have one of those pill grinder thingys- screw off the top- harder with one eye closed, put in 4 , hell make it 6, twist the top harder and harder to powder them, run the hot water, yes that should dissolve them, pour the powder in, mix it up with the toothbrush right there and then drink it. It tastes terrible, hot water and mashed aspirin as I gulp it down feeling the residue it leaves in my mouth. Feeling sick from it- willing it to start working RIGHT NOW and stop this. But it doesn’t stop.
Shit, start walking- downstairs into the darkness, hoping not to crash into anything into the back room. There is a pool table there I reach and find the edge in the darkness and start walking holding onto the edge, start counting how many times I lap it- 5, 10 15, 20. God, I forgot to look at the clock- so how long has it been- I need that frickin clock! I need to know how long, to have some faint hope of when it might end.
I feel like a prisoner-or-war in my own private concentration camp with a faceless tormentor. Keep walking, moving, eyes closed, try to outrun him, get away as he bores through my eye, deeper and deeper. But I don’t know what he wants. I have no secrets. On lap 176, my legs give out , I slump to floor and mumble “ I will tell you anything you want to hear “. The pain ebbs away.
I think I should have said that earlier, maybe it would have worked…
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ray4903
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Re: A Story from Mr. Cluster- Part V
« Reply #4 on: Mar 23rd, 2006, 10:09pm » |
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That routine lasted for 5 weeks on the first ‘episode’ in varying degrees. I still had no idea of what cluster headaches were or even existed. I endured the pain and examined every single aspect of my life always thinking that for everything there has to be a reason. A tangible reason that unlocks the mystery and provides some insight as to the what and why of these things. Sadly, other than virtually driving myself crazy, I found no why, no what, no real cure other than starting to believe in things way beyond what is natural and that the ‘beast’ was probably a real life Stephen King character and he alone knew the reason. You picture someone whom you probably know holding a little voodoo doll that looks just like you and they have way too many sharp little pins and are holding one way too close to your eye. But you do tend to almost develop a sense of humor about them – emphasis on word ‘almost’. So, that when they start again, you almost have to smile as you mentally buckle up because you know damn well you are taking another trip on your own private Uncle Toad’s Wild Ride.
When the headaches stopped, they just stopped. One day, nothing happened. It was like having walked for miles and miles in a fog and then all of a sudden I am back at home and life is the same as before in texture and appearance and after 3 days of no pain it was all like a bad dream – except it was not a dream – it was real, as I would come to discover every year.
Sometime after and before a new episode, which was about 10 years ago now, I saw my doctor and during a annual physical exam described what had happened. He had little knowledge about these things as being a G.P. but did get me to see a neurologist who specialized in headaches. I was very able to describe in great detail of the pain, the episode and everything I could think of. Within several minutes after my description, he diagnosed them as cluster headaches – a classic case of a very rare malady. I underwent MRIs , pulse imaging and a battery of tests to determine that it was not a brain tumor or such abnormality.
I have tried Verapamil and various drugs which all seem to work for a little while then become ineffective. Imitrex works and is a godsend only because of just that and although it is scary to feel it course through your system, make you tingly and uncomfortable, I picture the old Pac Man game as it runs after the beast through the maze of my body and eats the beast, even if only temporarily- as the beast seems to have an endless supply of quarters and that he alone knows where the ‘Play’ button is and takes extreme delight in pushing on it to start..
When the pain free days are there which luckily seem to be about 10 months a year give or take, there is no ‘equalization, no ‘you ran a good race’ and ‘ been through hell’ and now here is your reward. Rather, it is back to a life that was rudely and most painfully interrupted, causing you to fall behind in many things in your life both personally and professionally and leave you with an irritability that is both unknown and unwelcome to many. If that is a test, it is a good one, a real doozy, and hopefully builds character and an understanding of others who are in similar pain or distress and creates a true empathy to share with them in their private trials.
For those who have never had cluster headaches – ‘May the Force be with you “and I honestly and sincerely hope that you will never ever have a visit from the pain fairy and beast.
For all who have those visits, be safe, cherish the pain free days and collectively hope that one day they will figure out what causes them and affect a cure.—And make it affordable for all to have easy access to.
The End for now .....
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