Doc's Cluster Headache Journal

Tuesday, April 08, 2008

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 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)



  • the nerve! of them that is. the lines they continue to cross are never-ending. go get 'em, doc

    By Blogger deborah, at 4/10/2008 11:09 AM  

  • Have you ever tried this stuff? Some people swear by it. I assume that occasionally they are actually "real people". : )

    I would think that even if it worked for a migraine sufferer, the effects would not last very long. I tried it on both my migraines and during skull splitting cluster attacks and like I have been telling him I just didn't get much from it. So I'm curious if this product is used a lot amongst migraine sufferers.

    To be honest, I am not sure my migraines are as bad as some peoples are, in level anyway. (my 2 week solid migraine must win me some street creed I would hope though. heh) I try not to compare clusters to migraines in pain levels because you know I understand they both suck in their own unique ways.

    I guest I am sorta stumbling around saying, that I don't want to discourage anyone from trying something that might help them just because I didn't respond to it.

    Regardless of the companies overly aggressive marketing.

    By Blogger Murdock Scott, at 4/10/2008 2:44 PM  

  • I've never even HEARD of it before reading it here. I suppose I'm now setting myself up for some unwanted traffic by them; which I can certainly handle. I'm not interested in trying it.

    I did try something similar, I think, years ago, oh what was it called??? It was herbal under the tongue, there goes the memory.... I can't think of it. but that didn't work either. snake oil.

    Hey, when even the best drugs out there don't work for me, it's unlikely the herbal remedies and snake oils are going to do the trick. right? If I can think of it, I will get back to you on it.

    By Blogger deborah, at 4/11/2008 1:15 PM  

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