Minor Attack in 2019

For the last few weeks I have felt "out of it", had fatigue especially in my legs, had bad bouts of daytime sleepiness, and felt cognitively less "sharp"... All symptoms of what I have been calling my "Empty Cycles". Well yesterday I got a bit of a conformation in the form of a mild cluster attack. It was hardly painful in comparison to the knock down screamers I used to get, but it was definitely the old familiar pains squarely behind the right eye along a plane drawn between the backs of the temples. In fact I can feel a little flare up right now... with makes sense. This is traditionally about my early morning "time" for my second daily attack (or first attack depending on how you look at it cause they would come after midnight between 1-3 am).

This still happens now and then, so I am not FULLY done with them. BUT! I have to tell you. It is all SO much better! This is nothing, a little annoyance really. I may be a little grumpy, not sleep as well, but it will be over soon and I can go back to just having migraines with I still get all the time but are manageable. If anyone is reading this. Try to remember that clusters do end for many people. They have mostly ended for me. I know it's hard. I know it hurts. but it can get better.

Only mild symptoms recently. I am still taking a small amount of Topamax daily but I doubt that has as much to do with the drop off in attacks as just getting older does. I am 53ish now and like is often reported by others I seem to be outgrowing the pain.

I still go through cycles that I associate with clusters, I used to call them "stupid auras". Long ago I noticed that I started felling "weird" and out of sorts when I would begin a cluster cycle. I would complain that I couldn’t "think right" and have a bit of problems stringing words together. It was quite annoying and it was one of the things that convinced me that clusters were neurological in nature long before the research started to point that way. Well, sadly although the intense pain is mostly fading... the stupefaction still remains. I still have weeks or months long periods were I am convinced that I am working at a diminished capacity. When I cone out of one, it is like a new dawn and I often feel like I don't know what I have been doing during that time. Its like i'm trending water and every so often I get to come ashore and rest only to have the tide come in and I have to start struggling again. Add to this the well know effects of Topamax and the learning differences I was born with and I have a recall hard time presenting myself as the intelligent well spoken person that I like to be seen as. I sometimes wonder if I have always had these "stupid auras" and if it is related to or exasperated my learning disabilities in school and throughout my life.

Clusters are thought to be related to a dysfunction of the hippocampus, learning disabilities are dysfunction in other areas of the brain, I would not be surprised that one day it is discovered that it could be related. at least in some people like me. 

I am still getting migraines on a fairly consistent basis but they are getting less noticeable to be as I have just lived with them for a while now and are often long lasting but low grade. They can sometimes peak and get quite bothersome and still often last for many days at a time non stop. But as many cluster sufferers will likely tell you the pain is "different" and is much more manageable to me at least now that I am used to it after many years.

But if anyone comes across this the main take away that I want to share is that I am alive and well in 2017 and largely free from the brutal pain that I once suffered and is documented in this blog. Please take heart, I know it hurts... I know how much it hurts, but there is a light at the end of the tunnel.

"Empty Cycle" Update

I think this recent "empty cycle" is beginning to wane. One thing I have noticed however is that powerful early morning headaches and long lasting Migraines seem to be flooding into the space left in the wake as I start to feel better in other ways.

It is not unusual for me to wake up with daily headaches for long stretches of time, but these from this last week have been quite intense and annoying. Also I had a pretty debilitating migraine for close to 10 hours today. Actually, it never fully left... I can still feel it, but late in the afternoon it started to fall below the threshold that I notice pain these days if you know what I mean.

All this just seems to make me trust my instinct that I am greatly more prone to headaches of all kinds than most people are. Lucky me. Now if science can just figure out for certain why the hell that is.

"Empty Cycles"

I want to clarify my last couple of posts a bit if I can.

For a while I have believed that something is happening in my brain and that the cluster attacks were just the worst and most final result of that problem. Of course this is all speculation, just a few notes based on a few things I have read and my personal experiences, I really don't want anyone to confuse it with science...

Leading up to the cluster attacks I always experienced feelings of "confusion, being less able to focus, feeling cloudy in my thinking, aching in my legs and hands, general fatigue, extreme and bizarre daytime sleepiness. I don't think everyone who has clusters experiences these same things... So I wonder if they are somewhat like the various "aura" that migraine sufferers sometimes (but not always) report.

So here is the thing, over the several years as the actual headaches have gradually become less and less frequent, I would say that I can still "feel" the cycles... its as if the "event" that caused them is still happening, but perhaps my body has learned not to overreact so dramatically.

So I still go through many weeks of feeling like a weakened, less intelligent, dazed, hollowed out version of myself even if I don't get the soul crushing pain stabbing me behind the eye 2-3 times a day. Before when I was feeling stupid, achy, grumpy and weak, it was easy to blame it on the pain (except for the fact that these symptoms proceeded the onset of pain by weeks). So I begin to wonder if this is something I will have to deal with for the rest of my life. When people say that the clusters go away eventually, are they free from ALL effects of them or are they just lucky not to have a distinct "aura" like I am describing? Not a altogether bad trade off mind you, anyone who has suffered cluster pain would take that deal in a heartbeat.

Oh then there is the other trade off... as the clusters get weaker, they increasingly last longer.

So, I still feel lucky even though I have a weak little cluster banging annoyingly at the back of my eye demanding my attention like a petulant child, angry because I am doing my level best to ignore it.

Creativity And Clusters

Just a note on this new cycle.

For the last few months I have been working very hard on a new song. It is not directly about Cluster headaches, but it is about being the owner of a body riddled with odd health problems and how that effects how the world sees you and how you eventually see yourself.

I have been very focused on getting this piece of music done, or at least polished to a point that I would feel comfortable letting others hear it. But a couple of weeks ago that drive just left me... it drained away and I could no longer find it. I tried, but it was gone and the song sits NEARLY finished  like so many others from my past. I have been cursing myself... hating myself over it. Thinking that I am a incredible idiot and weak minded for not being able to push past my fear of what people will think of the final song, and I am sure that is part of it.

But this morning I realized something else.

When I was working on the song a lot and making great progress... I felt good. I was not in a headache cycle. I was free of not just the pain but also the "Aura" symptoms that go along with my clusters. Around the time that I started loosing focus on completing the song is about the same time I started feeling the effects of a new "cycle aura". Now reading this, you may think that those two things seem obviously related, but looking out from this flawed brain... its not always so easy. I am always trying to trick myself into thinking that I feel better than I do... That I have just a little more energy so that I don't let people down. Sometimes I fool myself into ignoring a LOT of discomfort. So waking up to the fact that you have increasingly felt like crap for several weeks and eventually giving yourself a break is not that odd really.

Spooky to think about the effect it has had over the last 20 years... Looking back, I realized that I was most productive musically before my cluster headaches began and  although I made some of my best music after the clusters started... I slowed down dramatically. And, I also stopped performing live. It was so long ago. I can't recall if it was a conscious decision, or more like something that just naturally happened. I can remember being afraid of what I would do if I were to get an attack on stage... The idea that I would be exposed like that, that I might let down my bandmates in such a dramatic way, the fact that almost no one would understand or be forgiving. I am certain that it dampened if not halt my performing in front of people.

I can recall that even though my headaches have slowed down a great deal and the chances of it happening were slim, when I did a recent reunion show with one of my first bands... I was scared to death that I would have an attack and not be able to perform. I almost said no to doing the show.

So, just a reminder to myself... finish the damn song! (but its OK to wait till you feel better).

Visit from a nearly forgotten and unwelcome acquaintance

For a couple of weeks now I have been complaining that:
  • I feel "out of it"
  • I am "20% less sharp" than usual
  • I can't think
  • My legs ache
  • I constantly feel fatigued and sleepy during the day

All these things are what I would consider my classic cluster cycle precursors. All the things that would happen to me in the weeks leading up to a long stretch of cluster attacks. Since I have been taking Topamax, and as I have gotten older and the attacks have become less frequent and fierce. Because of that, things have been a bit more muddled and less defined and I think I started wondering if I had imagined that these "symptoms" were really related because I was still experiencing them now and then but often without the headaches themselves.

But here I sit, with clear cluster pain growing behind my right eye and I wanted to type this to myself and to others that may also feel these same "aura" type symptoms leading up to a cycle. It is so clear to me at this moment that it is all part of the same thing... and when I get the "aura" symptoms without the painful clusters, I am still having a "cycle", just one that doesn't spawn the end result of crushing pain. This of course could be unique to me, Clusters seem to be odd that way. I wonder if its a bit like auras of migraine sufferers, some see spots, some get dizzy, some have no aura at all.

I wonder if it is something going off the rails a tiny bit in my brain. I start feeling dumb, unable to concentrate, constantly tired, I have muscle aches, problems staying awake, tonight I even felt dizzy for a bit (I never get dizzy) and then, if I am unlucky, the old familiar pain creeps in. I don't expect it to get very bad tonight, I haven't had many really horrific attacks like I used to in quite a while now, but even if this doesn't crest into a full blown cluster cycle, I still expect to feel "weird, tired, and confused" for at least the next several weeks.

The pain in my head is getting to the point where it is a little hard to concentrate on typing so I will end this post by reminding anyone who finds this blog that for many people like me, Cluster headaches start to go away eventually! I know how painful and hard it can be while they are going on... I may never by 100% free of them, but I am so much better than I was just a few years ago. Don't lose hope.

Light At The End Of The Tunnel

For some time I have wanted to make a post about how my clusters have been tapering off in severity,  becoming less frequent, and generally becoming less of a factor in my life. I still have headaches... both clusters and also migraines. In fact on any given day,  I am likely to have some type of headache pain. But cluster cycles are more infrequent, and when I have them, its often more of a vague muted/pressure/pain/hard to think kind of feeling. I am still taking Topamax so it is hard to say how much of this is due to topamax keeping them at bay but my feeling is that that I am just outgrowing them... like many people do.

So, I just want people who may come across this blog and are in pain to know that there is light at the end of the tunnel! Over and over again I hear stories from cluster sufferers that their headaches eventually become less frequent, less intense, or end altogether! Even if all the different treatments you've tried don't work, or only have modest success, you can still look forward to a time when the pain will just end.

Hang in there everyone.


Here are a few post from people who are reporting that they have seen the attacks drop off like I have.

Anonymous said...

"I haven't had an attack for 8 years now. I was told that my clusters would taper off and disappear. I never thought that it would happen but here I am pain free."
"Never give up hope folks."

Bob said...

"Sometimes my CHA episodes last 8-10 hours, and on occasion longer. After my 55th (or so) birthday I've had some remission, sometimes lasting for several years.  After three years off for good behavior, mine just started again today :-(

The good news, like you relate Doc, they are tapering off--the length of the episodes that is, and fewer 10s! Best wishes to all Cluster Heads."

Serious research? At Last!

I know I am probably behind the curve on this information... I have been in "lock-down" mode. Focusing all my scant energies on a 2.5 year old and keeping up with my work. But look! Much like a frigg'in ground hog after a long winter, I am poking my head out to Check my shadow, and post in case anyone still comes across these scratches in the clay.

A friend pointed out this article to me today.

LSD Alleviates 'Suicide Headaches'

Now, although I don't beat the drum about it on this blog, I think most cluster sufferers are aware that that people have been (apparently) getting results with psychedelics for many years. I think it has been tough for many of us to get on board with this idea. As I understand it, the people in the cluster community who have braved this path use very small doses of psilocybin or even morning glory seeds to self medicate. Damn, I don't even like taking well tested pharmaceuticals over long periods of time (under a doctors care mind you...) I don't think I would want to "roll my own" so to speak and although I have made mention of it on this blog, I never felt right about popularizing the idea based solely on what seemed to be anecdotal evidence. This stance was sometimes much to the chagrin of die-hard "shrooms cure clusters" fans. I am not really prudish about the substances themselves, I am not entirely a stranger to them or their effects. I mostly have issue with desperate people using potentially dangerous compounds over LONG periods of time with no understanding of how such use could effect them. I can say I have been very tempted to try it on many occasion. You know how it is, you really will try anything when the pain is at its worst. But even though I was interested, I never planed ahead before a cycle hit and besides I don't have the "connections". Well maybe I do, I am a musician after all... ; )

So to me, someone finally doing even a small study like this is very good news. I don't know that I have seen a study like this before. Perhaps it will lead to a safe, measured treatment or at least a greater understanding of what may help. So many people need an answer but just don't want to risk other aspects of their health in the process struggling for it.

Hey, If this does lead to an effective widely used treatment, we will all owe a big debt of thanks to the crazy bastards that first said to themselves... "Damn! This cluster is killing me! I wonder if it would help if I dropped some acid?" Personally, I don't think I would have wanted to take that trip with them.

Sleep, How Can It Be Wrong?

Tonight I decided I needed rest I had been nursing a headache (not a cluster) that I had awoke to the day before and decided that my wacky theories about sleep being a trigger for pain in my head MUST be false. (I go back and forth on thinking I am crazy about this point)

So I retired early, leaving my wife to deal with our extremely rambunctious 2 year old. (I had been dealing with him all day so I guess I shouldn't feel too guilty). I stayed in bed to see when I would crash, and for once I would be dressed for it and in the proper place for sleeping. At around 10pm I realized I was "sputtering" in and out of sleep like a short circuiting toy. I was jerking around and fighting it like I usually do (involuntary response akin to mild night terrors, possibly like the hypnic jerk (Myoclonic spasm?) movements infants make). Normally I try to occupy my mind during these periods because to be honest it is unpleasant and feels a bit like I imagine having a bad head injury would feel like. This is why I don't make it to bed so often and fall asleep wherever I happen to be when the "switch" finally gets thrown.

This is interesting...
"Myoclonic spasms and Epilepsy:
Spasms which are accompanied by a loss of consciousness indicate epilepsy, and should be explored further with an epilepsy clinic or specialist."

I am not implying that I think I have some form of epilepsy, just that there is clearly something weird going on in my noggin that no one has yet figured out fully. Topamax IS an anti seizure medication after all. But I digress...

The last time I saw the clock it was close to eleven and I finally passed out for good. At around 3:30am I came awake with a lot of pain. It was the same headache but it was intensified greatly and I could not sleep through it. I can no longer ignore it, I have to firmly assert that the longer I sleep, especially off schedule, (2-7am the more likely I an to get headaches of all varieties.

I hate these "other" headaches almost as much as clusters because they are annoying in a whole different way and require different tactics. Ignoring mild clusters is a skill I have mastered, it seems unfair to force me to learn a whole different method of pretending to be "normal" around other people.

Honestly I think I am failing and people are starting to tire of me.

Christmas Day

On Christmas morning I was going to wake up and get the house ready for my 2year old son. Start Christmas music, build a fire, make "Ho, Ho, Ho" sounds as he was waking up... that sort of thing. But at 6:50 my eyes fluttered open, I tried to move and pain shot through my skull. I started assessing the pain to see what I was dealing with...

It was on the right side mostly, but also spread all around the back of my head. It was a margarine and it was a bad one. Now I have had these a LOT in the last couple of years but it was Christmas and I was hoping to escape on this of all days. While not nearly as painful as a decent cluster, I knew that these "morning migraines" had the potential to last all day and in some ways be even more debilitating then a cluster.

Then I felt a tiny hint of it... there was a modest cluster brewing under the pain of the migraine.

My wife woke to me softly sobbing.

I am thinking of all you out there that have to put on a brave face during holidays. If you are like me and spend Christmas trying to "keep it together" while feeling like crap, I just wanted to say that as lonely as it feels, you are not alone... Merry Christmas, and keep up the good work.

Some Bad Non Clusters and Fear

I have not been getting bad cluster pain recently perhaps because the Topamax I have been on for quite a while has kept them under control or maybe because I am just in a natural lull like I have experienced before.

But that doesn't mean that I get to enjoy living with the reduced number and much more mild cluster attacks, oh hell no! Other "varieties" of headache have crept in to fill the void. Something about me just makes me very susceptible to headache... It is as if some entity even seems to "WANT" me to have a headache most of the time and will find a way to make it happen. It is a very unpleasant way to live your life. (a huge understatement due to a desire to avoid profanity for once)

So as if the headache that started sunday evening and lasted till Wednesday morning were not enough... My special friends the "intense pain in the morning if you sleep as much as a normal person" headaches are back.

The two day headache was close to the surface on the left temple very intense twingeing like a nerve gone haywire. the skin on that side of my face was tender and by the end of the marathon it felt like i had been hugging a cactus for 2 days while a prize fighter whacked me in the temple during breaks from the hugging.

The morning headaches I have described before, but they are particularly insidious. If I sleep enough to get good rest... I wake with a screaming vascular "all over" headache that hurts when I move and dissipates the longer I am awake. It takes about an hour for a really bad one to get low enough so I don't notice it. One thing I am noticing as this one dissipates is that is feels a bit like a cluster that has switched sides and is hidden "underneath" the tension pain.

The message of these headaches is clear... sleep to much (more than 4-5 hours) and you will suffer.

Neither of these varieties of pain is any were NEAR a modestly powerful cluster attack... but I am "used" to those and dealing with them. Plus, this is supposed to be MY time dammit. I am supposed to be rebuilding my spirit at any chance I get. Always in the back of my head is the fear that this my be the precursor to me becoming one of those poor souls that is genuinely chronic and has clusters every day of their life.

I have great empath for any of you out there that deal with that. Keep being so brave please.

Update On Recent Cycle

After the series of strong classic attacks that happened in late may (4 in one 24 hour period, Yikes!) I had a couple of weeks of moderate to strong attacks that slowly became less frequent. It took many more weeks of a slow tapering off before I could say that the cycle was coming to an end. Still, even as recently as yesterday I found myself complaining of low level "cluster type" pain in my "spot". But then anything less painful than around twice the power of a "normal" headache I tend to ignore.

Also I have been having a lot of problems with daytime drowsiness again... and also the weird thing where my muscles and legs especially ache in a strange way. My doctor has suggested that I may suffer from Fibromyalgia and I am resisting that diagnosis because who the hell wants yet one MORE unexplainable "condition" and take yet MORE mind altering drugs to control it.

I am convinced that there is one damn thing wrong with me that leads to a myriad of related issues. I often grow weary of being the recipient of "shotgun blast medicine". The attitude seems to be that if you toss enough pills at it, some of them have got to work!

What I want is to understand WHY I fell like I have been beaten up with baseball bats, had hot pokers shoved behind my right eye, and feel worse instead of refreshed and recharged if I try to sleep as much as normal people do.

I have a appointment with my neurologist this week and I am not looking forward to telling her that I had a bad cycle. It may mean that I have just been lucky and that the topamax is ineffective to some degree or that she will think that it is no longer working as well as is once seemed to be. Either way I am betting she will want to increase my dosage again or move me to a different drug... ugh.

The beast returns, with a vengeance

This is Katy writing; I just wanted to make a quick post about the most recent cluster cycle. It started in earnest on Sunday, May 16. Doc had four really bad ones that day -- one got up to a level 8. I think he may have had a few "low-level" ones in the few days prior. That Saturday was the Dallas 24-Hour Video Race, so he slept only about two hours Friday night, and was go-go-go all day Saturday. Then on Sunday he got hit really hard. Monday I think he had one, on Tuesday he had two (one was during a client photo shoot, bad timing, but it didn't get to the point that he had to excuse himself), Wednesday he had four again, and then I think three on Thursday. I believe that on Friday, Saturday and Sunday he may have had one or two per day. Doc says that his perception is that they have been decreasing somewhat in intensity over the course of the week.

Son of a...

Defiantly in a "muted" cycle.

I just woke up in my office chair at 2:00am (classic time for an attack) and I realized that the nightmare I was having was my mind trying to wake me up... because I have a little cluster ramping up right now. I don't expect it to get very bad. maybe a three in my scale. over the last two weeks I have gotten a couple of sharp attacks that "poke through" like this, often related to sleep. Like if I take a nap or sleep a lot the night before.

This have been one of the worst though... it may get up to a four before its ready to break.

Really just a reminder to myself that Topamax is not perfect and I am still getting really painful headaches more than any frigging human should have to.

not to mention that I wake up nearly every day with some level of migraine type pain... OK gonna have to stop typing, getting bad.

Maintaining A Low Roar

I know I haven't been posting much...

A 13 month old son with food sensitivities who wakes up 2-6 times a night and sometimes requires hours of soothing to get him back to sleep will cut into your "writing time". But thats not the only reason... I have been in a lull, bad cluster attack wise. I feel guilty in a way because I know so many of you are out there in such great pain and I don't think I feel worthy to speak about it at during a time that I am not feeling it as intensely.

I am still waking almost every day to a 2-3 migraine style headache and at least I forget... I AM in a little cycle right now. I am getting 1-3 level (my scale) "long and low" cluster pain at my typical times of day for the last two weeks but I am so used to mild cluster pain that I sometimes have to stop and think about it, almost "hunt for it" before realizing oh yeah! There it is!

Kinda sad, being so familiar with pain that it becomes like background noise that you tune out. Its still slowing you, making you less effective, you just don't have the time to acknowledge it anymore.

Now the burning question... Am I not getting bad attacks because I am on Topamax? Yes? Maybe? Partly?
a. I think Topamax is having a positive effect (for me).
b. I have had long stretches of time were I didn't get bad attacks before.
c. I get less headaches when I sleep less... and I have been up a LOT with the baby
d. I honestly think my body may just be "walking it off" due to my son

Topamax has pretty much proven to me that it is having some effect on my attacks. It is the best preventative I have tried so far. I understand it does not work for everyone and that just points out the elusive nature of controlling cluster attacks. For all I know my bad attacks will return with a vengeance in spite of Topamax and I would not be surprised in the least. In fact I am waiting for that shoe to drop.

Hell, It doesn't Have to be the Topamax that is fully responsible. Sometimes I just take a long stretch of time off from bad cycles... It has happened a couple of times before and each time I was hopeful that my nightmare was ending. I was heartbreaking to find I was so wrong.

Its now very clear that for me sleep is a "trigger". Yup! The more I sleep the more likely I am to get bad attacks and even migraines. Well, my son has been a real challenge over the last 13 months he needs around the clock attention and his headache ridden insomniac father can usually stay awake to give it to him. This could be 80% of the answer right here to be honest. When we get help watching him and I get the chance to catch up on sleep... I feel like crap after.

I am a firm believer that the body can rise to a challenge for a period of time and that I may be calling on resources that are keeping me healthier because I am caring for a baby. Now that may sound a bit odd coming from me but I think our own bodies are the best pharmaceutical factories on the planet. I don't think is too far fetched to think that I have triggered "fatherhood" changes in my body and that I am reacting in a positive way to providing care for a new person. Its a nice thought anyway

So there it is.

Still lots of headaches over the months, just not the ones that leave you rocking in a corner beating yourself at the base of the skull with the first weighty object you could find.

My wife told me something the other day that made my blood run cold. Our son has been waking up at night more often that usual recently and screaming loudly when he does. She was having a hard time getting him back to sleep and she said he started banging his head rhythmically against he arm and then started hitting himself in the head with his hand in the same way. We both just just kind of stood there for a moment knowing that if he had headaches it would explain so much about why he has had so much difficulty. Then we both decided it was too horrible to consider and I broke the silence by saying "head banging in children is pretty common".

When I was alone I spent a few minutes sobbing at the idea that I may have passed any of my insane health issues on to my wonderful son.