wink     ; )

Back to the Misery

For the past 6 months or so, I've had fairly constant Shadows. I've gotten accustomed to them and they've been decreasing in intensity the whole time even as they have maintained their frequency.

It's weird how easily you learn to accommodate "inconveniences" when you have no choice in the matter. I've simply worked my decreased efficiency and lower energy level into my calculations of what I can do and when.

However, all of those calculations were blown to #&!! this past week when my Clusters returned in full force. No more merely having pansy-@$$ Shadows (though I'm still getting those too); no, the menu is for eye-popping-wake-you-in-the-middle-of-the-night-searing-pain. Wheeeeeeee!!!

This is no real surprise. Typically, I get Clusters for 2 months or so followed by 4 month respite. Then I'll get a new round of Clusters. Basically, I have a roughly 6 month cycle that corresponds with the beginning of Spring and Fall. So this new Cluster is coming right on cue (very polite of them to be so punctual). The only weird thing is how my last round (of Shadows) never went away before this new round arrived).

Trying to live a normal life

(Sorry that this is kinda rambling. I don't really feel like editing it though.)

One of my constant struggles is how to not let my Clusters (and Shadows) rule my life. I try so hard not to let them interrupt my schedule and activites. While I definitely make lifestyle changes so that I can respond well to my Clusters, I can't just drop everything when they hit. If I just hid myself away with every attack, I wouldn't have any sort of life. I wouldn't be able to take classes. I couldn't work. I'd never see my family.

So I make an effort to keep my plans intact even when I'm in the middle of a Cluster. If I'm in a class or at someone's house or on a bikeride and a Cluster hits, I might stop for a minute to take some meds, but I continue doing what I was doing before. I've tried to cultivate an attitude of "Well, if I'm going to have a Cluster anyway, then I might as well try to have some fun and make it at least a little more enjoyable." After all, the alternative is to stay at home and be bored while suffering the same amount of pain.

I have to hide the pain from the people I'm with if I don't want to ruin their time with me. I can certainly do that--I've had a lot of practice by now. But doing this is exhausting (as if the Clusters weren't enough of an energy drain all by themselves).

This particular round of Clusters/Shadows has been going on for four months or so now (it has been so long that I've lost count). Typically, I'll get hit at 10:30AM and the pain won't stop 'till 10:30PM. That covers the vast majority of my interactions with other people. I'm starting to notice that it is taking a toll on my relationship with Tree and Spark in particular. I can't hide all of the pain from them. I stare off into space a lot as I try to manage the pain. I don't pay as much attention to what is going on. I don't talk as much as I used to. I can't play with Spark as long (I don't have the patience and/or the energy to play repetative games over and over and over and over). I find myself wandering off in search of alone time so that I can conserve energy. None of these are big things. But they add up in their small ways over the weeks and months and I find myself feeling distant.

What's the solution? Is there one? More meds? I could, but I'm not sure that the side effects are worth it. The meds that I already take are affecting my moods more than I would like.

Tree has been a trooper through all this. I don't want to repay her by becoming distant.

Tease

Just as I thought that the Shadows are going away, they came back and whacked me good today. Ah well.

Despair and Reprieve

I woke up weeping.

The prospect of facing another agonizing day had reduced me to tears before I was even conscious. Despair had slipped around my mental defenses while I slept and taken over. And anyone who was able to discern that 90% of my last post was wishful thinking, braggadocio meant to bolster a weakening resolve, well...you get a gold star.

At any rate, I couldn't just lie there weeping in bed. I had to get up, at the very least to get some Advil, but more importantly, to take care of Spark. So I forced down the tears and despair and got moving. And I just kept moving and moving and moving because in every quiet still moment the tears sprang back up. Catch my breath by the sink--start crying. Dry my hands in the bathroom--start crying. Finish strapping Spark into the carseat--start crying.

I drove to my sister's for our weekly playdate. She saw how miserable I was and sent me off to bed. I told her to get me up in an hour when it was time for Spark's nap and I'd put him down, then I went to bed.

I woke up four hours later.

I knew that I was exhausted from fighting my Shadows, but I had no idea that I was that exhausted. But my sister could tell and she let me sleep for as long as I needed. I felt remarkably better. Despair had been banished once again and tears didn't threaten to overflow with every lapse of motion. That evening, Tree made me go to bed early as well--9:00. She has been enforcing reasonable bedtimes ever since and will continue to do so until the Shadows depart. Why? Because I'm actually happy again.

Even though I'm still in pain, I'm finally able to enjoy Spark again. He's a very happy bubbly boy and his joy is typically infectious. But these past few weeks, I haven't been able to enjoy him; I merely take care of him. But ever since my sister's generous gift of sleep (one week ago), I've been able to laugh again, much to my family's relief.

Thank you Sis. You're the Best!

Seeing the Dark Cloud

Apart from the very obvious pain, one of the hardest things about Clusters/Shadows is how exhausting they are. Pain management quickly drains my physical and emotional reserves. This is fine for a day or two, but Clusters are a marathon, not a sprint. By the time I'm two weeks in, my reserves are tapped out and I'm dreadfully aware that I have another two weeks ahead of me. Or maybe two months.

It is at this point that Despair begins to sing her seductive song.

The advice from other cluster sufferers is to Get Angry--anger does a wonderful job of chasing away despair. And they're right, it does. But anger requires a lot of energy, and by the time Despair come knocking at my door, I'm usually fresh out. The other problem is that Anger just isn't very sustainable. I can get angry for an hour no problem. But I don't know how to sustain anger for the weeks or months necessary to fight Cluster-induced Despair. Anger is great in the heat of battle, but it does little to sustain you during a siege. And that's what this is. I am besieged by pain and despair and they are waiting for my will to fight to starve, for me to collapse and surrender from exhaustion.

Anger doesn't help in this long-term siege, so I'm forced to convert that anger into something more durable. Revenge is the ultimate long-term version of Anger, but there is no one to exact Revenge from. (I could try to exact Revenge on Clusters in general by becoming a neurologist and curing it, but let's just say that that isn't going to happen.)

Resentment seems to be my next best option. It has an infinite shelf life and requires little energy to maintain. But I still have no one to resent (except maybe God) and by nature I don't seem to hold onto Resentment very well. Bitterness is an option too. It has nearly the shelf life of Resentment with the added bonus of having an appropriate object: I can be bitter that I'm afflicted by this condition. But I don't want to be a bitter person and I don't want to inflict my bitterness on the people around me, the people I love.

So what does that leave? What weapons do I have left to fight Despair? To ride out the Siege? The only one I can find is Grim Determination. I will resign myself to the fight, even if I know I will lose. There is a heavy cost to this: I must give up hope. Not the hope that I will eventually be OK, but the hope that tomorrow might be pain free. I cannot resign myself to the fight and hope for a reprieve at the same time. The disappointment of unrealized hope breaks my fragile resolve. In addition to giving up hope, I also give up joy. There is no joi de vivre in Grim Determination, no delight. There is only the setting of my feet to the path laid before me. And when all you see before you is battle, stopping to smell the roses just brings sadness and longing, not joy. However. This is a price worth paying in order to keep on fighting. So I soldier on as if it is my destiny. I do not flinch when the pain comes. And I do not surrender to Despair.

Searching for a Silver Lining

I woke up today with another Shadow. (Shadow = a long, drawn out, but less intense Cluster. Same amount of pain, just distributed over a longer span of time.) I've been having them for over a month now. Today my Shadows were making my shoulder muscles feel like they were going to rip from the tension and my right eyeball felt like it was in a vice. Not a tight one, but tight enough to be painful with the pressure starting at the back of my eye and travelling down my optic nerve deep into my brain--so deep that I could actually taste the pain in the back of my mouth.

The one good thing about having Clusters (and/or Shadows) is that it gives a sense of purpose to my life. When I'm in a Cluster, I'm no longer wandering aimlessly through life. I have a mission: I must Survive This Day. I wake up and I may be tired and in agony, but I've got a goal and it is horrifically well defined: Don't let the Beast win.

I know that I'm involved in a number of Good Causes, any of which is enough to give my life Meaning. I know that I have good short and long term goals and that I'm not really wandering aimlessly through life. But none of those causes or goals have the terrifying immediacy, the inescapable immanence of Surviving the Clusters. The other ones are not compelling, are not forceful. This one is insistent. It demands attention, focus, action. There is no procrastination, no screwing around, no weighing of priorities--I give it my undivided attention and it dominates every aspect of my day.

I am on a mission. I will not lose site of my goal.

Shadows

Shadows. People who suffer from cluster headaches call the all-day, non-stop extremely minor cluster headaches "shadows". Regarding intensity, they are about as bad as a medium normal headache. But they don't go away, they respond poorly to oxygen (or at least they respond poorly to oxygen in my case), and they have the characteristic pain behind one eyeball.

Right as I was coming into the final two weeks of school, I got my first shadow in 6 months. Shadows often are precursors to full blown clusters. But sometimes they just remain a series of shadows with no serious clusters. That first night I was terrified. I couldn't sleep out of fear that a cluster was immanent and would destroy the remainder of my semester. It had after all been about six months since my last cluster. I was pretty much due.

Luckily, it never progressed to full blown clusters. I've had shadows pretty much every day for two weeks now, which is pretty annoying, but is absolutely nothing compared to clusters. Advil, extra sleep and occasional quiet times were able to keep them under control and amazingly, I was able (thanks to Tree) to get all of those things during Finals. And with any luck, this bout of shadows may restart my clock and I might get another 4-6 months pain free once the shadows are gone.

Thank you God.

I Hate...

I hate how my clusters make me feel old--how I end up lying in bed with an oxygen mask on while my son holds my hand and looks at me with concern.

I hate how my clusters make me feel like a bad father--how I am forced to ignore my son's crying because I need to inhale ten more minutes of oxygen--how I sometimes wish that he would just leave me alone so that I can deal with my pain in peace.

I hate how my clusters make me feel like a junkie--how desperate I get for my drugs, how I am restless and nervous if I don't have any drugs on me. When a bad cluster hits, I have a ritual: I take my statdose pen and disassemble it and lay all of the pieces out in front of me. I prep an area on my arm. I bring the needle up to my skin. There is a moment of hesitation, anticipation. In that moment, there is nothing more important than that needle, nothing I care about more than getting its contents into my bloodstream. Then the needle slides under my skin. It doesn't hurt at all. I push the drug unto my system and wait. And wait. And wait until that blessed moment when it starts to kick in and all of my troubles melt away.

Good and Bad

I haven't been blogging because I've been having tons of clusters. As a result, the only thing I think about are clusters, and thus the only thing I have to write about are clusters. And I'm damn tired of writing about clusters.

But here I am writing about clusters anyways.

I'm getting my butt kicked by these clusters. I'm getting 3 or 4 a day. If I don't treat them, they last all day. But I just don't have all that many meds. This morning I was just despondent. By 10 AM, I had had 3 clusters and I could not summon the will to get out of bed. How could I face the rest of the day feeling like this??? How could I face another endless day of pain?

But eventually I did get out of bed--the lure? watching Spark take his first swimming lesson. Fun for the whole family!

Also, we took Spark in to Yuen Lui to get his picture taken. My goodness is he photogenic! (And my goodness are those photos expensive!)

Cluster Terminology

Many people who suffer from clusters hate that clusters are officially called "cluster headaches". The use of the word "headache" in many ways trivializes the pain that is being suffered. Make no mistake about it, a cluster is nothing like a standard tension headache. True, while a cluster entails an "ache" which is located in the "head", and is thus a "head-ache", it is only a "headache" technically. So telling someone who sufferers from clusters that it is only a "headache" is like telling a woman in labor that she is just having "cramps"--technically true inasmuch as labor is an involuntary contraction of the muscles, but still completely wrong.

Most people understand that a Migraine headache is something far worse than a standard tension headache. So I used to just tell people that Clusters were relatives of Migraines. But that doesn't seem to capture how bad they really are. So I have come up with a new description:

Tension headaches are toddlers throwing a temper tantrum. There's a lot of sound and fury, but very little actual damage gets done. Migraines are those toddlers when they've grown up and become rebellious teenage punks. They go on random sprees of destruction wreaking havoc just because they can. There's no pattern or malice, just mayhem. Damage but no direction, no focus. Clusters are when those Migraines have grown up and become disciplined torturers. They are rational and efficient. Systematic and methodical. They know how to inflict maximum pain, and they do it on a schedule because, hey, they've got other things going on in their lives too and can't spend all day torturing you.

Still Going...

Contrary to previous hopes, my cluster is not yet at its end. However, my new meds do seem to be having an effect. The intensity of the clusters is very low, so much so that it is possible (though not preferable) to get through the day without any treatment whatsoever. In addition, I am getting only one cluster a day on average. And some days none at all.

Also, I have confirmed what I had previously suspected--that eating makes my head feel better. In particular, it is the chewing that makes me feel better. So although I munching on some chips or a good meal, I can still derive some relief by chewing some gum. (I don't particularly like gum, but oh well.)

Between the Prednisone, which made me ravenous, and the pain relief brought by eating and the general goodness of filliny my belly, I have gained some eight pounds in the last three or four months. Not good. I'm hardly in trouble yet, but this is a trend I'd like to stop now rather than later. Unfortunately, I'd forgotten how difficult dieting can be. This afternoon I was feeling that unconfortable but bearable gnawing feeling in my belly and at the same time suffering from a low grade cluster and I thought to myself "A nice snack would fix both of these problems (at least for a little while)." But alas, it would not solve the I'm-continuing-to-gain-weight problem, so there we are. No snack for me.

Little Steps

Alex says:

I've not slept even six hours a night in the past week. This is a mild, continuously-compounding sleep deprivation which does not keep me from doing anything, exactly, but is present in everything I do. It feels like there is a large vase in my head made out of heavy, clear glass. I can feel it begin to topple slowly as somebody begins to explain something to me, or as I am trying to expel a sentence from my mouth, and there is a heavy, sleepy, rolling-dizzy feeling in my temples and the backs of my eyeballs that spins my thought around until I am not longer sure what direction I had intended it to go in.

At the end of this round of clusters, my exhaustion was pervasive. My mantra became "little steps...little steps". Every normal sized task seemd overwhelming and the only way I could even attempt them was to break them down into tiny bits and tackle them one at a time. Things as simple as going to the bathroom had to be broken down into 1) put down Spark, 2) walk down the hall, 3) enter bathroom, 4) pee. All the while I would have to give myself a constant stream of encouraging chatter lest I give up and collapes in a heap.

I'll grant you one thing about clusters, they certainly make you feel like your life is epic. Every ordinary thing becomes a giant obstacle and every daily difficulty becomes an epic struggle. You may lose all sense of perspective, but nothing is boring.

(Of course, as with all who find themselves in true epic circumstances, you find yourself wishing you were not in epic circumstances at all and normal drudgery seems like the most attractive thing in the world. How ironic then that in my case it is the routine that seems epic and all I'm really wishing for is for the routine to seem boring again.)

Update

This round of clusters seems to be nearing (or at) its end. In the past few days I've had only light clusters and they have been few and far between. Thank God.

I've also ended my Advil ban. After a couple weeks of no Advil, I was having the same amount of pain, so I clearly wasn't suffering from rebounds. No point in suffering unnecessary pain. I am trying to cut down to 3 or 6 a day though.

I've been wanting to wrtie up a summary of what clusters are in general and my personal history with them. Maybe now that this round is done, I'll have the time. (Though maybe now that this round is done, I won't have the motivation.)

Not Getting Better

I've suffered triple-headers for the past three days. I'm fair knackered. I used the Imitrex Tip yesterday and the day before, but I refrained today--I just don't have enough Imitrex to go around using it every day, even if I can get two or three uses out of each dose. I used Oxygen for temporary relief, and napped and ate for some even more ephemeral relief.

I started off the day having to change Spark. I was, of course, exhausted. And I was sporting a Kip 7 Cluster. Spark's pants and onesie refused to cooperate with me, which was frustrating. Somehow I managed to hurt Spark while wiping him and he started wailing. Then, I was unable to get a new diaper onto him because his pants and onesie were in the way.

Spark kept crying and crying as I attempted and failed to get him changed and dressed.

By the time Tree came in to see what all the fuss was about, I was about ready to lose it. Tree took over and I retreated to the bathroom to pull myself together. The rest of the day was better but still hard as I fought through a haze of pain. The cluster didn't dissipate until 4:00 when Tree came home and relieved me of childcare duties so that I could collapse into a much needed nap after 10 hours of pain.

Imitrex Tip

Today was a three cluster day. Ugh. In an effort to conserve my few remaining Imitrex shots, I tried something new. Imitrex comes in an auto-injector just like insulin shots or epi-pens. Basically, I took the packaging of the Imitrex apart so that I had the bare needle. Then I injected it manually, but only used half of the Imitrex. This way I can get two doses out of every needle. (Right now Doc is reading this and shaking his head. Sorry Doc. Yeah, I know, I know just enough about medicine to be dangerous.) It worked. I only needed half a dose to abort the headache, and I have reduced chances of rebounds!

I was holding the needle just above my skin and for a long time, I couldn't bring myself to plunge it into my body. It's one thing when using the auto-injector--you can't see the needle. It's another when you are holding the bare needle. I finally mustered the courage to stick myself, and I couldn't feel the needle at all. That was pretty cool. The stinging didn't come until I actually started injecting the meds into my bloodstream, but since I wasn't injecting all of it, and I was able to do it slowly, it was much less painful than using the auto-injector.

I'm excited that this works! I can get a lot more mileage out of the few shots that my insurance will let me get. (Insurance only allows me to buy four shots every 30 days. Anyone in the midst of a clusted can go through four shots in less than a week. Grrrrr.) Now I don't have to be as worried about running out of meds all the time.

Prednisone

One of the meds I was on for my clusters was prednisone. Among its side effects is that it made me insanely hungry all the time. When I was on it, I was eating some 4000 calories a day. (It must have bumped up my metabolism too because I didn't gain too much weight.) It became my default mode to scavenge for food in the pantry. One interesting thing I noticed was that eating made my head feel better. I don't know if it is the physical act of chewing and swallowing, or if it is the sugar rush, or the some other chemical effect of eating (are endorphins released when you eat??), but my head always feels better when I eat.

When my course of pred was finished, I started taking various pain killers to deal with the increased frequency of clusters. They had the effect of damping down my appetite. So I went from hungry-all-the-time to eating-because-I-know-I-should. But now I'm off those too and am my hunger levels are back to normal.

Awake

I was awoken by a cluster, but also by Spark's crying. I attempted to deal with Spark first. I went into his room and spent half-an-hour with him, but he cried every time I even turned towards the door of his room. He just wanted to know that I was there. And I just wanted to go get some oxygen.

Half-an-hour was all I could take. I left him crying and went to get some O2 and hoped that he would cry himself to sleep. No such luck. Since inhaling my dose of O2, I've fed him and held him and changed his diaper. He's still crying. It has been an hour and a half since he first woke up. I have no idea what to do now.

This is not going to help my exhaustion issues.

Cluster Update

An update for those who are wondering how I'm doing on the Cluster front. The Clusters are still coming (latest one was this morning), but they are less frequent and less intense than before. We're back down to about one a day and 4-5 on the Kip scale. Last week my doctor prescribed some new meds for me. One of them seems to be doing its job. ;) (The other two...not so much. The first one failed to have any effect whatsoever. The other gave me a very itchy rash.)

Though the clusters are weaker and less frequent, the energy drains are astounding. I need to sleep all the time and I'm staggering around when I'm awake. I'm hoping that I'm just fighting off a cold in addition to the clusters because I can't think of any other good reason why I have so little energy.

(The energy drains are also responsible for my lack of posts for the last few days.)

I've also gone cold turkey on the Advil. My doc advised me to quit using NSAIDS lest they reduce the effectiveness of my cluster meds, and also to reduce the possiblilty of rebounds. I miss my Advil. I've had so many "normal" headaches and other pains (like cold sores and sore throats) which Advil would easily take care of. Now I just have to suffer those minor aches so that I can better deal with the killer pain of clusters.

No rest for the weary

I spent all day (OK, from 6:30 AM - 3:30 PM) fighting a Kip 7 cluster. I can already feel the next one gering up.

As bad as they get

I had my worst cluster in a year this morning. It was an 8 on the Kip Scale (I've never had a cluster that went to 9 or 10). I threw every drug in my arsenal at it, including several new ones that my doctor just prescribed to me, and it took it down to a 7 on the scale.

How bad was it? Well, I took out my bat and repeatedly hit myself over the head with it because, believe it or not that feels better than just doing nothing.

Yeah, it was that bad.

Besides banging my head against walls or hitting it with a bat, I was also hyper-ventilating and rocking back and forth and whimpering. Thank God for Tree who took care of Spark while I was incapacitated. I don't know what I would have done if today hadn't been a holiday and she had been at work.

Once the meds dropped me down to a 7 on the Kip Scale I was able to function again. Even though I was in terrible pain, it was now tolerable, though just barely. I managed to hold myself together through playgroup. My cluster didn't fade until 3:00--a full 6 hours after it started.

I can't handle too many more of those.

Respite Over

The respite is over. The clusters are back. Urg.

Whelmed

I am whelmed. Not quite overwhelmed. Certainly not underwhelmed. Just at my limits, no more, no less. Whelmed.

My clusters have been bad. I've had a respite for the past two days, which is the only reason why I have the time or energy to write this post. But aside from today and yesterday, I've been having three clusters a day (2AM, 5AM, 7AM). Every day. For the past week. And Thursday was special: I had four--a personal record.

I've finished my course of pred. I'm almost out of Imitrex. My oxygen is merely cutting the pain, instead of aborting the clusters.

Of course, I still have to take care of Spark. (Thank God for Tree who has taken over many morning duties during this cluster so that I can get an extra half-hour of precious sleep every day.) Errands to run. Playdates to keep. Somehow I've managed to cook dinner all week. And of course there are dishes to wash.

I've managed to hold it all together. Just barely. The delirium and energy drains and clusters alternate with bouts of mania--an hour or two where I can actually focus and can somehow summon the energy and motivation to act. In those moments, I can actually accomplish most of my tasks for the day.

I never think that I can't do it. I always think I'm going to be exhausted at the end of it. And I'm always right. Whelmed.

Wake-up call

What would the day be without a 2 AM wake-up call in the form of an exploding eyeball?

(Answer: a darn tooting good one. I'll let you know when I have one.)

Like Clockwork

For those who were hoping that I would get an uninterrupted night of sleep tonight, rest assured that I did not. As could be easily predicted, I got yet another cluster.

Frag. Men. Ted. Sleep.

Now that I'm tapering off my meds, my clusters are hitting hard and fast. For the past few days, oxygen has had little effect, merely dulling the pain instead of abolishing it as it usually does.

So that means that I get woken up every morning around 3 or 4 AM. And the pain guarantees that it will be at least an hour, if not two or three, before I can go back to sleep.

Other factors affecting my sleep. I don't seem to be able to get to sleep before midnight. Spark's schedule demands that I get up by 7. Intermittent insomnia. I am the one who helps Spark fall back asleep if he wakes up in the middle of the night.

Result: These past two weeks have seen some of the most fragmented sleep I've ever had.

Combine that with the energy drain of clusters, the wooziness imparted by my meds, and the occasional bouts of dizziness and nausea from the headaches.

Final Result: delirium.

This morning, I literally could not see straight. My eyes would cross and unfocus involuntarily. It took effort to maintain balance. Taste and smell were a few degrees off, as evidenced by the air smelling and tasting metallic to me despite being actually odorless and tasteless. Tree would say something and I could watch her words filter through useless layers of consciousness before landing in a place where I could do something with them.

Everything had that odd dreamlike quality to it, but it turns out that all of it was real.

I hope I get some good solid sleep soon.

Predictable

Is it 4 in the morning? Then I must be having a cluster!

$#!7

So much for that idea

OK. So I can't make it a single post without more complaining. Ooooh my freaking head.

Oxygen didn't help. I'm currently waiting for the Imitrex to kick in.

Sometimes I can be real jealous of some of the other Cluster sufferers. Most of their headaches only last 1-2 hours. Unlike mine which last 4-8. [Count your blessings department: luckily, unlike many of them, my headaches rarely get past a 7 on the 10 step KIP index o' pain, and I'm not chronic either.]

Waiting....waiting...waiting

Like Standing in a pool of Acid

Aside from the excruciating pain of the headaches themselves, the most annoying thing about clusters is the energy drain. Have you ever played a video game where you're walking through a dungeon or something and you stop on a discolored spot on the floor which turns out to represent an acid pool or somesuch and you can just watch your life/health just drain away? Even after I've used meds to abort the headache, the rest of my day is just like standing in an acid pool with all of my energy and will and motivation just dwindling away to nothing.

For those who have experienced depression, it's kinda like the I-have-no-energy-or-motivation-to-do-anything part of depression except that it happens much faster and is usually gone the next day (unless I have a cluster the next day too).

It's kinda wierd to just stand there and watch yourself get more tired. It's definitely freaky that it happens fast enough that you can watch it.

Due to the energy drains, last year I changed my work habits a little. When I was in a cluster, I would do work that needed my attention as soon as I could. I would pull near all-nighters even when not necessary because I never knew when a cluster would hit and sap me of all motivation. I could always sleep in or take a nap teh next day to recover. And if I got a cluster, I would definitely take a nap after my meds to recover.

But now that Spark is here, I have to change my habits again. I can't just sleep whenever I want anymore. Spark's schedule simply does not allow for that. So now I have to sleep when I can, and work around my sleep and clusters. When the clusters hit, I have to stay awake and muddle through them addled by drugs and energy drained while attempting to take good care of Spark and take care of other responsibilities as well.

This is much harder than last year.

Luckily, I have better meds this year than last year. But still. I am somewhat at a loss as to how to manage my time during my clusters.

Again and Again

You know what? I'm getting really sick of getting woken up every day around 4ish by my clusters. It gets old real fast.

Clusters and dreams

This morning at 4:00, I was awoken by a cluster. I stumbled off to my oxygen bottle and sucked away for 20 minutes until the pain went away. It should have been gone in 10. That did not bode well. I made my way back to bed and was awoken an hour later by another cluster.

Daily doubles suck. Daily doubles this close together are brutal. I know from experience that another dose of oxygen so soon after the first will do absolutely nothing. So I immediately went for my Imitrex needle.

The Imitrex did its magic and the pain melted away. It also jacked the bizzare factor of my dreams into the stratosphere. Galadrial, magic keys, fireplaces, lifeguarding, deep unlit pools with strange machinery, kids drowning, babies in rain gutters. My dreams are typically filled with strange images, but this was bizzare even by dream standards.

What was particularly disturbing was how difficult it was to distinguish between dream and reality when I woke up. I was utterly baffled to find myself in bed instead of on a roof looking at babies in rain gutters. And it took minutes to get my bearings and for my head to stop thinking that bedrooms were strange and babies in gutters were perfectly normal.

When Spark took his morning nap, I took one too (having gotten little sleep during the night), and I had more bizzare dreams and the same difficulty straightening out my head when I woke up.

My spirits have been high, but I've been a little off the whole day now.

More Headaches

So...continuing where I left off last week...

On the morning of my last final I got a cluster. It was a light one and I still hadn't returned my unused bottles of oxygen from my last cluster, so I took a hit of O2 and was fine. The unrealistic optimist in me hoped that it was a just a really late tail end headache from my last cluster, which I had thought ended about two weeks previous. Or alternately just a fluke random isolated headache.

Of course it was neither. The whole reason they are called clusters is that they cluster together. They don't happen two weeks apart, and they don't happen in isolation. My happy delusion of not entering another cluster fell away that night when I had another headache (again treated with O2). And then another the next morning (which O2 failed to even dent). Three cluster headaches in less than 24 hours. And no more doubt about the advent of a new cluster.

Fortunately, the intensity of the headaches in this cluster has been relatively low. Unfortunately, my Prednizone has been doing precious little to prevent new headaches. Surprising as it usually works well.

My energy, mood, and appetite have been going wild due to the headaches and the meds. Which explains my recent lack of posting (here or elsewhere).

Cluster

Here's a handy synopsis of what Cluster Headaches are.

A friend of mine asked me if I have trouble thinking when I'm having a cluster. I can still think fine, but it takes a lot more effort. The pain obviously consumes most of my attention, so it is very hard for me to focus and/or concentrate. Anything that requires significant focus/concentration (e.g. papers/exams) ends up being done much slower and ultimately is of lower quality.

Of course, things like papers take a lot of time, and the headaches won't be continuous for the entire time--that's why they can get done at all. While the actual headaches are happening, I am able to concentrate if I put forth a Herculean effort, but good luck trying to convince me to care that much about anything. Usually, my only priority at those times is getting a hold of meds.

And that brings me to the next wrinkle: meds. The meds are pretty good at masking the pain, but they definitly dull my thinking. So if my headache isn't too bad, I'm left in a dilemma: dull the pain and dull my thinking, or skip the meds so that I can keep some mental acuity. If the headache is bad enough, then I'm not going to think straight anyways, so I should just take the meds so that at least I'm not in pain. But the lighter ones leave me with a trade off to make. And when I have a particularly hard paper to write, sometimes I have to forgo the meds.

Sorry, I'm just kind of rambling now. I'll stop now.

Stupid Head

I have been diligent with my meds and as a result, this cluster of headaches is not as bad as it could have been. It is, however, still excruciating.

I have not lost my "Bring-it-on!" attitude (as Syndromes put it), but I must admit that I'm very tired. Keeping that attitude and fighting resignation and despair is exhausting. Throw in midterms and work deadlines (to say nothing of taking care of Spark) and I'm not only burning my candle at both ends, I'm burning it in the middle too.

Spring Break is coming soon. We'll see if I don't collapse before then.

They're baaaack

The headaches have returned. But I am ready this time--armed with tanks of oxygen, syringes of Imitrex and tablets of Prednisone. Maybe they will be successful in keeping the demons from derailing my life.