Doc's Cluster Headache Journal

Thursday, April 10, 2008

Clusters Eat My Music Career

Recently I've been spending a little time reconnecting with the fine folks at cluster I'm not sure why I feel so uncomfortable around other cluster headache sufferers but I honestly think it's that seeing so many of us in one place is little overwhelming for me. Knowing that each one of these people hurt as badly as I have is honestly something thats difficult for me to deal with. For example, I noticed that there is a message board heading for parents of children with cluster headaches... I haven't been able to bring myself to click it. I had just never before considered that there were child suffers and the idea of such a thing nearly has my mind paralyzed.

So I go for long periods of time were I don't seek out the company of other clusterheads. I'm a bit of a recluse as it is, but all it takes is little bit of me feeling out of place for me to want to hide myself away. And if there's one thing the cluster headaches will do for you, they definitely make you feel out of place, out of sorts, and quite often out of your mind. This is not to say that I don't care, I think it's almost the opposite I'm afraid of getting way too involved. Getting overwhelmed by the community and the stories of every person in it. I can absolutely see myself doing that.

So I set up a new account (I can't find the information on my old one, I think he used some funky alias because I was afraid my boss at the time would find out about my cluster headaches and I would get fired) and I started poking around again. Well tonight I found the "getting to know you" thread and started thinking how I would describe myself and what I do. Well, this is the exact sort of thing that when discussing with other cluster sufferers I can be brutally honest with myself about and discuss in a way that I usually don't. So when "normal" people ask me what it is I do, I tell them I'm a graphic designer, a photographic illustrator, photographer, but mainly I'm a musician. I explain to them that I'm a vocalist in a somewhat progressive avant-garde vocal oriented genre defying band by the name of Payne's Grey... well when considering how I would describe what I do to other cluster suffers I realized that it would most likely admit I don't really do music much anymore.

I try, I aspire to do more, I keep my gear up to date, and talking with my wonderfully talented guitarist Shawn O'Neill about finishing a few of the songs that we haven't quite gotten done but the real story is that the cluster headaches have pretty much crushed my drive and ability to make music. Making music was never easy for me. Everything about it was very challenging time consuming especially when you consider the fact that I was so demanding of myself and wanted everything to be perfect. I want the music to be absolutely the best I could make it. And I'm really not willing for it to be anything less. Unfortunately, those goals are a little hard to reach when you feel like absolute crap half the time and you're exhausted the other half.
When I think back, and really kind of amazed they did it for as long as I did. I started getting headaches while I was in bands that were regularly performing live. I can remember several times being on stage with headaches and praying that my head wouldn't get any worse. Luckily, my clusters were on a very regular schedule for quite a while and I could pretty much count on a mild to medium attack around 2 PM to 3 PM and nothing more until the really heavy duty attack usually around 1 PM to 3 PM. So the chances of me still being onstage singing during a bad attack are usually pretty slim but I did sometimes get them off schedule and I kind of lived in fear of that. Although it was never a conscious decision that I recall, I wonder now if that's one of the reasons I stopped performing.

As far as creating and recording original music I kept going strong for many years after getting the headaches but looking at it in retrospect, I think I eventually just ran out of steam and I had to start narrowing down the things in my life and making choices about what to accomplish. I'm very proud of what I have done musically and I would say I have had modest success with but it is never been something that earned a lot of income, especially when you consider the amount of time that I put into it. I don't really ever remember having the thought "I need to stop making music because it's wasting my time" but with big chunks of my life being ripped away from me, with all kinds of strange medications being poured down my throat having all kinds of unsettling effects on my mind and focus, with exhaustion being heaped upon the last round of exhaustion that I never fully recovered from. I think it just became clear that I couldn't afford it... I couldn't afford the luxury of the time necessary for me to create music.

So now, I mostly do photography as a creative outlet, and doesn't require as much attention to detail, or a whole different set of disciplines from the photographic illustration that I do currently to earn a living. In other words, I get to do creative stuff and still simplify my life. Of course, if my recordings were to start selling to the point where I could justify it, maybe I could refocus on music as a career... but with the way the music industry is going the chances of an avant-garde emotive male vocalist who is a bit older making a living from selling digital music on the Internet is... well highly unlikely.

Where's my camera...

by the way if you want to hear this wacky music or see some of my goofy photos hit up these links:

Payne's Grey on the iTunes Music store

Something in Doc's Eye

Doc's Photography at


  • Ouch! Nothing more frustrating than something that stops you from doing things you enjoy. I had something that could be classified along the lines of cluster headaches for a while. On and off all day, never knew when it was going to hit me with crushing pain next.All over my head but mostly on the sides.

    I am truly a skeptic so it took me a while to listen to a friend's advice.Eventually I broke down and tried some high quality probiotics that he was suggesting. Went all out and bought the refrigerated kind from a health food store. I would have never have believed that it would do anything but it worked.

    Hope you find an answer.

    By Anonymous Anonymous, at 4/22/2008 10:12 PM  

  • I appreciate your input. I hope you can appreciate my skepticism for homeopathic remedies. Few people really understand the severe nature of cluster headaches, What you described doesn't sound much like clusters to be honest. I only say any of this because so many people misunderstand and think of cluster pain as similar to a "bad headache" that they are used to. Its hard to say if the pain of one person if greater than another persons, but clusters are generally considered to be some of the worst pain a person can can experience and survive. For example women that have them have said the pain can be comparable to childbirth. During a cycle that can be a nightly experience for someone like me.

    Who knows, maybe the product you mention will help. But chances are many of us have tried it. Trust me its a hobby to test out every claim that comes out. I don't doubt that the product you mention is beneficial, and may help people that have headaches caused by stress, allergy... any of the normal headache suspects.

    But my personal belief is that migraine and cluster headaches are the outward manifestation of a neurological disorder that is not yet well understood. So to me, its kind of like suggesting eating better to an epilepsy patient. Sure its a good idea, but I can't see it solving the issue...

    Having said that I will pick some up and eat it... ewww

    If it has any noticeable effect I will report it in my blog.

    By Blogger Murdock Scott, at 4/23/2008 3:20 AM  

  • Appreciate it? I share it.
    I still don't know if that is what helped me. All I know is that when I stop taking them the pain comes back. Not a moment too soon either, I remember having trouble getting to the store when I bought them because I was in such pain.

    I have really short hair and I remember my girlfriend asked me if it hurt on a certain spot on my head. It did? I wondered how she knew? She said that she could see my head was swollen there. That was scary!

    After taking the probiotics the pain has not stopped altogether but it happens much less frequently.

    There actually are studies out there that support the claim for migraines related to micro organisms. I think a cluster is a different animal as you say although perhaps remotely related.

    Each person is different which makes finding a silver bullet cure impossible. Problems like this require a custom routine to manage them. Adding probiotics or a healthy diet or a fitness routine may not cure you but may help the meds you take work better.

    There are few great mysteries left and I don't believe cluster headaches are one of them. Find a research medical facility (Mayo, Cleveland Clinic) that has someone who specializes in them and pick up the phone if you have not done this already. They will find a way to help you.

    By Anonymous Anonymous, at 4/24/2008 11:14 AM  

  • "There are few great mysteries left and I don't believe cluster headaches are one of them."

    Well, sadly, on this point you are mistaken. It is in fact quite a mystery. Some research is going on but cluster headaches are not well understood. A "cure" is not available. Treatment is hit or miss and usually involves drugs that have side effects that are undesirable, especially given the level of effectiveness.

    I am under the care of a neurologist at a well respected pain management clinic in Dallas that deals specifically with severe headache. I also keep an ear to the ground to listen for other sources of information about treatment and research. Some things look interesting, Like quite a few people claiming to have "cured" themselves with miniscule doses of currently illegal fungus or researchers "interrupting headaches" with very high powered magnetic fields. (I know that sounds quackery but it seems to have a good basis in real science and some measurable results)

    Most research I have heard of suggests that cluster headaches might be related to dysfunction of the hypothalamus and that and that vessel dilation is a secondary phenomenon. All of which make good sense to me given the precise timing of the stupid things. What other human disorder can you practically set your watch by!

    You are right about taking care of yourself, but honestly Cluster sufferers are sometimes lucky to pull themselves together enough to do the things that need to be done, let alone anything "extra." I will say that the human body is a whole machine and something wrong in the gut effecting the brain so dramatically is not out of the realm of possibility in my mind... just indirect and unlikely.

    One other thing I need to mention, and try not to take this as an accusation...

    I trust that you are a concerned person trying to give honest advice. If you are however a viral marketing person I would kindly ask you to move on. You may have read some of my recent posts about dealing with such people so I apologize if I seem a bit paranoid, but I an afraid I have had many people come here and pretend to be sufferers in order to sell products. They were very subtle at first, friendly and believable, which of course makes it even more offensive. I am pretty good at sniffing them out as I am somewhat savvy and can see a visitors IP address.

    So I really hope you are not one of those people... that would suck... I am going to assume you are not at this point. : )

    Good luck to you and I hope you continue to feel well.

    P.S. The part about the swelling on your head kinda freaks me out... I hope you saw a good doctor. heh.

    By Blogger Murdock Scott, at 4/24/2008 1:58 PM  

  • Viral marketing. Thats funny.
    No I am a programmer oddly enough. That means I am far too lazy to market anything. Unless I wrote something to market it for me?? Oh, a side note, IP's are generally useless in stopping people. So many open wireless networks that people can connect to and get a different one. I want to use some cliche about herding cats here but I am stopping myself. Trying to think of something simple you could do but my ideas all involve complex things beyond most bloggers.

    Still have not seen the Dr. yet but I go on Tuesday. I don't think the swelling has come back since I added like 5 supplements to my routine. Still get standard tension pain 3 or 4 times a day for brief periods. The shooting pains that were on top of my head, the ones that made high bridges and tall buildings look like an acceptable therapy, have stopped for now.

    Debating about asking for a full set of scans for that or not. As you mentioned earlier, magnetic fields don't play well with my noggin. I think wait and see might be the best policy.

    By Anonymous Anonymous, at 4/27/2008 11:56 PM  

  • So far, people I suspect as being marketing folk have been surprisingly unsophisticated. I understand the limitations of identifying a savvy person via an IP address but the funny thing is I don't think the ones that have done it had any clue they could be sniffed at all... So My statements are a basic scare tactic to the uninformed. I have no illusions about stopping people that know the "tricks".

    I think they are just people sitting behind desks at small companies making posts on slow sales days.

    If it gets really bad I will just start killing every post that mentions any product or treatment. It makes me sad, but I don't want hucksters playing on the pain and desperation of my readers.

    The recent "war" posts will help explain my paranoia if you want a laugh.

    So this all just started for you right? It just occurred to me that I had an "event" that sorta kicked off my headache career myself. I don't know if something changed in my physiology or what but that first "I never knew pain could be like this" headache was not actually in the location where I have Clusters or migraines now.

    I really hope this is a one time event for you my friend and not a herald of joining this club.

    I am sure the doctor will want to do a cat scan at least. Any time someone reports that much headache pain they want to eliminate other possible causes that require immediate care. I think I have had 4 cat scans of the ol' noodle. But if given a choice... don't wait and see.

    Honestly the pain you describe does not sound like a cluster to me. It dose not have any of the tell-tale signs and it really dosent sound particularly "migraine-ish" either. and that leaves? I dunno... That makes me want to encourage you to take this pretty seriously. and eliminate any dangerous conditions that a cat scan might reveal.

    I can't have a MRI. : ( I have 5 fragments of a bullet in my leg and the Doctors told me they were afraid of moving one and it going into an artery. hehe.

    I don't know how serious you are about the "high bridges and tall buildings" comment, but clusterheads have to treat those type of statements as if they are serious due to the number of people that do in fact end their life because they have cluster headaches. If you are in that kind of pain and you had those types of thoughts because of it, Don't mess around. Get to the doctor quick. TELL THEM that the pain was that intense. Make them understand. Get scanned, get poked, get prodded. No amount of yogurt in the world is gonna fix it if you have something seriously physically wrong in your head.

    Disclaimer: I'm not a doctor... just some guy with headaches.

    Take care bud, I hope you are free of headache pain soon.

    By Blogger Murdock Scott, at 4/28/2008 2:23 AM  

  • I'd say that I am more at the angry phase of pain than the hopeless phase. I have only had problems for a little over a year now. Still optimistic despite not having an entirely pain free day in 4 months. So not really looking for any easy outs at the moment. I am going to discuss some options for getting to the bottom of this tomorrow with the Dr. Just not something that I already know will result in a 3 day long continuous brain fog + headache and no real answers.

    If you suspect that a real company is behind your marketing posts. Try running a whois on the IP's. There are websites that will allow you to search on an IP and find it's owner. If it is an ISP such as Verizon or Comcast or something then it is an idiot at home. If it is a company that really makes a product, then you can send them a strongly worded letter of discontent. Claim copyright infringement, threaten legal action, get some amusement out of it at the very least.

    By Anonymous Anonymous, at 4/28/2008 6:56 PM  

  • Yeah, I have been whois-ing folks since the mid 90's, the problem like you mentioned in a previous post is that its easy to spoof. Also I suspect a lot of viral marketing people don't necessarily clock in at a 9-5 office job. Many of them probably do it from home on what would appear to be a regular old consumer style dynamic IP DSL account or cable. Hopefully the thought that I may take the time to try to discover if they are representatives of a company and only pretending to be headache sufferers will make them think twice before posting.

    Sorry to have drug you into this side conversation in the first place. heh.

    I wasn't aware that you have had this going on for over a year. I totally understand and agree with your "fog" statement. I assume you are saying you want to avoid narcotics. I am with you, if it had taken all the pain killers that doctors wanted me to take over the years I would have accomplished next to nothing. Preventatives in use now seem to be quite a bit less mind numbing. The one that I am on now does still make me a bit goofy but it may be tolerable. I have my own doctor appointment with my neurologist next week to evaluate how well they are working... short story is, not that great.

    The not having answers thing is the worst... but thats sorta the deal I have found at least with my headaches. The "cause" is still mostly a mystery. Makeing them stop has been like throwing darts blindfolded.

    Just make sure your doctor knows how much this is effecting your quality of life and such. I think they sometimes have a hard time wrapping their heads around how much "mere" headaches could really mess with someone.

    Good luck at the doc, and stop by to tell us what happened.

    By Blogger Murdock Scott, at 4/28/2008 8:39 PM  

  • Yes indeed this is not a just a passing headache but a way of life or interruption of it for a long time now.
    It's such a long story but it sounds like you probably know most of it from your own experiences. Don't know what kind of headache this is and don't care. I need some sort of relief more than I need a classification at the moment. Don't like the idea of being lumped in a group regardless of what it is.

    Got some pain today before visiting the Dr. He wants more tests and I am in no position to argue.

    Going to take a few weeks to get it all done. Let you know if there is a major discovery.

    By Anonymous Anonymous, at 4/29/2008 11:45 PM  

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