wink     ; )

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.)

Crabby

I have become uncharacteristically crabby in the past week or so. I'm not sure what my problem is, but I need an attitude adjustment soon. (So far Tree has been patient with me. It would be best if I did not exceed her patience.) Maybe I'm too tired. Maybe it's too hot out. Maybe I thought that all my problems would go away when Tree got home for summer vacation (her summer vacation started last week) but they didn't. I dunno. But I snap at people. I'm impatient. I'm condescending. I'm frequently irritated. I don't carry any of this behavior to an extreme, but it is all more than normal and I'd rather nip this in the bud if I can.

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.)

Brushing My Teeth

Around 5:00 PM today I went to the bathroom. When I was done, I brushed my teeth. I do not normally brush my teeth in the middle of the day. I left the bathroom and was talking to Tree before I realized that I had just brushed my teeth for no particular reason.

I still have no idea why I did that. I must either be so tired that my brain is misfiring, or I'm going senile waaaaay early.

Beta Testing

I'm beta testing a new puzzle game right now. It's a wierd experience. I'll figure out an optimal strategy (which may be a bit too optimal) and tell the programmers about it, and the next version of the game is rebalanced so that that stategy is no longer so strong.

The game itself is not terribly addicting, but I can't really think of any significant improvements either. Hmmmm...

Bye Mom

Peppy came by this morning and picked up Mom and they left to go home.

I rather liked having Mom around the house. Dishes and weeding and gardening and laundry all magically got done with her around. Plus, it is now too quiet around the house.

Bye Mom! We miss you.

Amusing Advertising

I had a good day today...no clusters. Here are two amusing pictures to celebrate:

Note to the makers of this snack food: "Cheddar and More Cheddar" is not "Two Flavors", it is one flavor twice.

Good thing I didn't go for those "Centipede-Shaped" diapers that I saw down the aisle from these ones.

Mom

Tree's mom is here on a surprise visit. She arrived at 6:00 this evening, just in time to help celebrate Tree's birthday. (Peppy will drive himself and mom back home on Sunday.) Yay for Mom and extra celebrants for Tree's birthday!

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.

Happy Birthdays!

Today we celebrated the births of the two most important women in my life: Tree and Sis. Happy Birthdays!

Peppy

Peppy is here for a visit. Yay for Peppy! This is the first time he has seen Spark, who is Peppy's third Great-Grandchild. They seem to be getting along famously.

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.

Summer School

Today was supposed to have been my first day of summer school. I spent a lot of time worrying whether I should take it or drop it. I wanted to get it out of the way, and I wanted to take this class from the prof who is teaching it this summer, but I was worried about leaving Spark in someone else's care for 8 hours/day for a week, and I was worried about trying to take a very intense class while suffering from my clusters.

I kept wavering back and forth, until my decision was made for me: the school cancelled the class due to under-enrollment. Good. Now I don't have to feel guilty about not taking it this summer and I get a full refund of my tuition (which I would not have gotten if I dropped the class).

Its a good thing that the class got cancelled too--my concerns turned out to be pretty valid. I am still in the midst of a cluster, which would have made taking the class difficult at best, and Spark just does not yet seem to be able to handle being apart from both me and Tree for more than a few hours at a time. So if I were taking the class right now, I'd be trying to concentrate through pain, endure 8 hour classes day after day through energy drains, and I'd be worrying about Spark the whole time too.

Thank God for summer vacation.

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.