Clusters Eat My Music Career

Recently I've been spending a little time reconnecting with the fine folks at cluster headaches.com. 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:

PaynesGrey.com

Payne's Grey on the iTunes Music store

Something in Doc's Eye

Doc's Photography at Murdockscott.com

War Part 3

OK, I think I am going to just stop responding to them because I am getting creeped out. The person I have been speaking with offered to have the lab mix a stronger batch for me. *blink* *Blink* 

Honestly, I know they probably know what they are doing and have good backgrounds but that just seems reckless to me. After all, no matter where the substance comes from, it is still a chemical compound. So, I don't think I will be accepting the offer to be a guinea pig.

I could huff puffer fish pee too but in large enough quantities who the hell knows what THAT would do to me? But its natural right?

WAR! Part 2

I received a reply from my new friends at S*nol and they kindly offered to make me a shill as well! I can give away free trials of the stuff weeeeeeeeeeeee. hmmmm. Set up trials of a product that I personally believe doesn't work.... hmmm let me think on that one.

This was my email back to them... They have one of those scary "DO NOT REPRODUCE" footers in their e-mails and although I think those are worthless and intended to intimidate in just these type of situations... I will honor their wishes, I don't want to stoop to a lack of respect similar to theirs, and I will not post any portion of what they wrote.

Name Withheld,

I would in fact like to see those clinical trials, but be aware that I am aware of how such things could easily be procured especially in our current climate of poor regulation. I wont necessarily see such documents as "Proof" of anything unless I could independently verify said findings. I see a sleep specialist, a neurologist at a well considered headache management clinic in Dallas as well as a general partitioner that has a special interest in treating headache sufferers. I will be sure to ask them all what they think of the research you provide. Maybe they could answer what it is I am doing wrong as to make it not work for me.

Maybe they could also shed that same light on the reasons if doesn't seem to work for several people at Clusterheadaches.com or why it does not seem to even be listed as a treatment option at O.U.C.H?

Maybe the documents will shed some light on why it doesn't work for the husband of the poor woman that just posted on my site about it. I am sorry sir, but saying it enough times will NOT make something true and from my perspective, that is what you marketing department is trying to do. I have my experiences and no matter how many people you send in to try to "spin" them, they are still valid. It would be best to stay clear of my blog in the future. Be aware that I am somewhat savvy and can see a visitors IP address.

The funny thing is, at first I was simply off handedly stating that it didn't work for me and that people should try it for themselfs.... its the aggressive behavior of you company that has put me at odds and made me feel like I have to defend my position and the people I feel I represent.

"person makes satement about personal space on the internet and internet having "no limits" and that the cost of being on the web is to have companies and individuals take advantage of that freedom"

Are you serious? No limits? Sir, we have the same limits we have ALWAYS had. It is a public space same as any other, and I expect your company to act the same way they would if they were in a park, mall, or on my green as it was viewable from the street... with respect. The fact that you choose not to do that speaks volumes.

Look, I know you may very well believe in what you are saying... but if you have never personally experienced a cluster headache you may just not understand. I think your company may just be barking up the wrong tree recommending this to people with cluster headaches. Where did they even get the people for the cluster studies? I just can't imagine it, Have you ever SEEN a person in the middle of a really bad attack? If they took 10-15 people having mild attacks then... pft. sure. but you know what? Most of us SLEEP THROUGH THOSE. We could care less about something that takes out the pain of a 1-3 level attack (2-5 being what I would consider a migraine level pain, yes... I have both) After 16-17 years I can do a "normal" level of headache pain without batting an eye.

So when I say it wasn't worth it to me... I mean it... it simply didn't offer me anything worth the effort and annoyance. Hitting myself in the base of the skull with a blunt object repeatedly offers more relief. Thats not a joke by the way, if you don't know what I'm taking about then you need to learn more about cluster headaches.

I don't know if your email was an attempt at an apology, but in some ways it had quite the opposite effect. heh. once again, you may have underestimated that you are dealing with a population of people who are constantly in a foul mood. (that was a joke, sorta)

Doc.

*Sniff* *Sniff*

Post from this morning...

Sinol works for me as well. I have found that I must use it when my auras first appear or else it only takes the pain down a notch. Dont give up on it!
By Anonymous, at 4/08/2008 9:08 AM

Site visitors from that time frame:
9am 24.181.183.216 12 actions 5m 27s
Visitor detail IP address:24.181.183.216
Name this visitor IP lookup: ARIN / RIPE
Language:English
Location: Monroe, CT, USA
Oper. System: Windows
Web browser: Internet Explorer
Resolution:1024x768
Javascript: Enabled

Compare to:
Sinol USA
PO Box 73587 S. Main St. Newtown, CT 06470
(203)270-7755 Fax (203)270-6866
www.sinolusa.com

WAR!

Last night the line in the sand was crossed... you do NOT come on to my land and set up shop without my say so. You DO NOT take advantage of the weakened and fragile state of the desperate people that may stumble into this place looking for answers or just the friendly voice of someone who knows what kind of hell they are going through!

I sent the invader a quick email last night asking when I could expect payment for their ad. They replied this morning with confusion. Here is the response to the Parts of the following is redacted as to not promote them more...

Sir,

As you may have guessed from my previous e-mail, and quite annoyed. I've been a cluster headache sufferer for over 17 years. I'm sure this is something that you know a little bit about as it is remotely related to the nature of your product. I think you would agree though, the idea that your product could offer complete relief for someone who suffers from the amazingly brutal pain of cluster headaches is a bit far-fetched. At least I hope you're not trying to market your product as a "cure" to these poor people like myself. That indeed would be a sick, sick joke.

Having said that, we as cluster sufferers will try anything and I mean anything for even small amounts of relief. So yes, on the recommendation of a friend, who merely has "normal" headaches, I tried your product. Honestly I found it to be ineffective against the tidal wave of pain that is associated with cluster headaches. To be fair I don't blame your product, it was unmatched fight to begin with. Cluster headaches are described as some of the most terrifying pain that can be experienced by a human being and yet allow them to survive.

So, sometime ago. On my personal blog where I relate and archive my experiences with having this debilitating condition, I mentioned in a polite manner that remedies of this type didn't seem to have much effect for me personally. I was very careful not to mention any product names, but explained that I had tried both available brands that I was aware of. I also encourage people to try the products for themselves as I am keenly aware that not everyone responds the same way to these type of treatments.

Since that time, the mere mention of the words "Capsaicin Spray" has brought about quite a few posts on my site glowingly praising the seemingly and miraculous effects of your product, always carefully mention it by name or saying how much better it is than the competitor. Now it is true that I am a bit of a cynic. But it is also true, but this is the digital age and the wild West of internet advertising. It seems as if almost anything goes, and anything is fair game. So I personally was polite to these posters and respectfully disagreed with them repeating my position that even though the product didn't work for me everyone should draw their own conclusions. Other visitors to my website, were not as kind and seemed to identified them as shills and marketing wonks and went as far as calling them non-sufferers. Personally, I have to agree. I find it very hard to believe that anyone who suffers from cluster headaches would find your product to be anything more than just a minor tool in their bag of tricks to fight this horrible affliction. But at the same time, I didn't want to misidentify anyone or falsely berate someone who did feel that they had gotten some relief from using your product. I am sure some feel they do. So, I've quietly seethed and held my suspicions at bay.

Until last night, my God! Do your people ever have giant ones.
I got a ping from my blog showing that I have a new comment post and I went to go see what it was and I found this jewel...

*********************************snip**************************************
p said...
All New Natural Nasal Spray: Sinol

"My Headaches are gone! Thank you so much." – Jean Burns

“I eat a lot of hot peppers,'’…“I for some reason started doing that in 1992, and I swear by it. I think it keeps my metabolism revved up and keeps me healthy.” – Hillary Clinton

Capsaicin, an ingredient that comes from the pepper plant and is found in most spicy foods. – SinolUSA

Sinol All Natural Nasal Spray with Capsaicin

Sinol is the first over-the-counter nasal spray created for allergies, sinus problems and headaches. Our homeopathic all natural nasal spray is made effective with Capsaicin and provides relief of sinus pressure, allergy symptoms and headaches, including sinus, cluster and migraine headaches and post nasal drip. Nasal sprays for headaches, allergies and sinus problems sprays work faster than pills or liquid form because nasal sprays go directly to the problem area. Pills or liquids needs to be digested and absorbed before they become effective. Sinol relieves pain and pressure associated with sinus problems, allergies and headaches in minutes!

Headache:
Headaches are caused by the contraction of blood vessels around the eyes and across the forehead. Capsaicin is effective in dilating constricting blood vessels and is the main ingredient in Sinol. For fast relief of migraine, cluster, sinus, premenstrual, menstrual and tension headaches. Sinol is a fast acting all natural remedy that can relieve headaches when they first begin. Nothing works faster than Sinol Nasal Spray for headache pain!

Sinol is extremely effective for migraines, cluster and tension type headaches. You will experience relief in 2-12 minutes. If your headache persists follow up immediately with 1-2 sprays.

For Allergies/Sinus:
For relief of indoor/outdoor allergies and sinus conditions.
A daily regimen of Sinol will keep you breathing clearly and easily each and every day.
If used in a regular daily regiment (3x a day) Sinol can prevent allergy symptoms throughout the allergy season.

Sinol will drain sinuses and keep them clean and bacteria free. For severe sinus problems such as infection or sinusitis, use Sinol daily.
The all-natural ingredients in Sinol perform a specific task in relieving headache symptoms:

Aloe Vera Extract, Eucalyptus Oil. Rosemary Extract, Sea Salt, Ascorbic Acid (vitamin C) and Capsicum 4x,

For more information call us at 1-888-******* or http://www.*********/
*******************************snip*****************************************

Now THAT, is just plain as day. It's an advertisement. Placed in my personal blog. Without my permission.

Let me ask you something, do you see anything wrong with that? Do you see a problem here? Do you understand why I would be upset?

Sure, I could delete it. But why should I have to? Why should I have to defend myself against companies trying to promote themselves on the site were all I'm trying to do is provide my friends and family and interested people information about what is going on in my life with my head, with my pain. If your people had looked at my blog they would have seen that I don't even have ads for myself! none... not even the little google ones. I don't want there to be any question about my motivation... so no ads.

You're dealing with people who are in pain... in the case of cluster sufferers, a great deal of pain. You don't really see anything wrong with spraying your digital graffiti on our personal space, and if you're willing to do this, then how can I be sure that Mary or Ted or Jake who posts about how much they love your product are not just marketing people doing spin control. Its just so damn wrong on so many levels.

You need to find a new way to promote your product. Have you ever tried advertising, with you know, dollars? It's a lot more of a direct relationship and leaves the people you're dealing with feeling a lot less like they've been abused. Perhaps you should consider that.

I don't think I will be removing your post. Instead I think I will make an example of it. I cannot tell you how much I absolutely despise this type of behavior. Any goodwill I had toward your company is completely eroded. Good job!

Doc.