Doc's Cluster Headache Journal

Tuesday, April 08, 2008

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.


5 Comments:

  • I'm glad I found your blog and I'm going to make sure my husband is aware of it also. Four years ago, I lost my husband to Cluster Headaches. Life has never been the same since. I feel so bad for him and what he goes through and I've tried to help him by doing research and finding new doctors. He once used "Sinus-Buster". It was one of the alternative treatments I found online. At first he thought that it was working, but soon discovered that it wasn't. But when you live with someone who is in so much pain, there isn't anything you won't try. My husband would have two cycles per year. Spring and Fall. each lasting 8 to 12 weeks. In the beginning, he was misdiagnosed and over medicated with narcotics. After much research, we weaned him from the narcotics (which were completely ineffective and made the CH worse) and have since evolved to treatments which include: Oxygen, Topamax and Imitrex injections. Also, it is important to say that he has begun aggressive allergy treatments and has shots once a week. It's all about eliminating those triggers! We are working on reducing his exposure to stress as well. He skipped his Fall cycle in 2007 and he thought that he was going into remission. However, over the last week, he's had several "hits". He was relieved in a way, because he said that they were not as severe and that they were very short in duration. Also, he hasn't had a hit for the last two days, which is very unusualy when going into the cycle. I would love to continue chatting to you about this horrible condition and I hope my husband posts some of his thoughts as well. As the wife of a cluster headache sufferer, I recognize the devastativing effect this can have on the entire family. I walk on eggshells every day. This sounds terrible, but I get angry when I know he's beginning a cyle. I just wish they would go away and never come back. Sincerely, Elizabeth Tapia, Indianapolis, IN

    By Anonymous Anonymous, at 4/08/2008 1:46 PM  

  • Elizabeth,

    Its nice to meet you, but my real wish is that you would never have had reason to come here. So that greeting never seems to be the right thing to say. The thing that is really closest to the greeting I want to give new visitors is something along the lines of... "I'm sorry that we have this brutal thing in common, but I am glad you found me if the information here helps you in any way, even if that is only to let you know you are not alone in the world and others understand what its like to go through this."

    I know how hard it can be to be the partner of someone with cluster headaches. My wife puts up with a lot and I can't thank her enough. I didn't always think she would stick with me and I am very grateful that she did. I can tell you that there have been times that I have gone for over a year without any significant cycles/attacks and other times that have been even longer with short cycles or mild attacks. I have also over the years, sort of built up a set of skills for "dealing" with the pain and it gets less traumatic and disruptive over time as you learn to work around it to some degree.

    Also over the years mine have gone from being like clockwork soldiers hitting me in fairly regular cylcles with well timed attacks twice a day
    2-4pm soften him up with a level 2-3
    2-3am smash him with a level 5-10

    and much like your husband's my cycles lasted anywhere from 2-4 months, but I think mine are "getting old" and mushy... there are posts about it here but long story short I have headache pain a lot more of the time now for much longer periods but with with much fewer severe attacks.

    I still get "Bad Cycles" and the classic hardcore clusters but I seem to get them less and in exchange I just hurt moderately in a chronic fashion. I mention this because I may seem to have different things going on with me currently but I fully understand what your husband is going though.

    I think Topamax is having some effect on my cycles and attacks but it is too early for me to really tell exactly. I would say that this class of drugs seems to "disrupt" them in me and make them less perdictable while at the same time makeing them less severe. So I find the repost from your husband having "not as severe and that they were very short in duration" hits. while on Topamax very interesting.

    By Blogger Murdock Scott, at 4/08/2008 8:10 PM  

  • Doc: Thank you for your response. My husband has been on Topamax for over a year. Although he feels it's helping him, he also wants to get off the medication due to the disturbing side effects. He is hopeful that the immuno-therapy (allegy shots) will help relieve some of the triggers associated with his CH. Also, he feels that being able to "hone in" on the specific triggers is a vital key in reducing or eliminating the attacks. This is his (our) goal. Stress seems to be a large factor in the severity and duration of the cycles as well. Would be interested in hearing back from you about your observations, and what triggers you - although I'm aware that it will be different for everyone. He got up at 3:00 a.m. this morning and got on his oxygen... haven't talked to him yet this morning to see if that helped. Question: He was given the nasal canula to use with his O2. Should he be using a face mask?? I've been doing a lot of research regarding the pineal gland and hypothalmus and their role in this whole CH nightmare. Also, I'm looking into magnetic field therapy. So far, the reports seem to be favorable.

    Something interesting you may want to know... My husband was diagnosed with Lyme disease four years ago as well. Soon after, that's when the headaches started. Our current doctor said that the disruption of his immune system, because of the disease, was a factor. I've had him and numerouse immune building supplements and encourage him to eliminate stress, eat right, sleep right, etc., in the hopes of rebuilding his immune system. I know you're probably aware of the melatonin deficiency link too.
    I have to go now, but I would love to continue sharing our experiences. I will print off our posts and let my husband read them. I hope he will log-on and talk to you personally. Again, thank you so much! Elizabeth Tapia
    P.S. I would love to speak with your wife as well. Perhaps we can be a support system for each other :)

    By Anonymous Anonymous, at 4/09/2008 9:31 AM  

  • Elizabeth,

    Are you still around?

    I am sorry I didn't respond more quickly.
    Honestly, I think part of the reason is that you seem very positive and hopeful and sometimes I have trouble matching that enthusiasm in other people on the subject. I've had most of the hope and enthusiasm beaten out of me a long time ago and I'm not sure that I want to infect your hopefulness with my defeat. If that makes any sense. So if anything I say he starts to get you down, just do me a favor and don't let it. : )

    You probably have already figured this out by now but he should definitely have a mask for the oxygen, at least that's my understanding. I have tried oxygen on two different occasions and found it to be somewhat helpful but overall disappointing, even with the mask. I think there is some danger involved in breathing oxygen with a mask for extended periods of time, so it would be a very good idea to hop over to clusterheadaches.com and read the threads regarding oxygen and masks. It can seem a little intimidating over there, because they're talking about things like customizing masks specifically for cluster headaches and using oxygen obtained from welding supply sources, but there are people over there that know a lot more about oxygen than I do. I just never got enough from it to bother with it to that degree.

    Like you said, everyone is different. I believe this greatly when it comes to cluster headaches. I think some of the biggest confusion that people seem to have on the subject is that they believe that everyone should react exactly the same way to the same treatments. And I just don't think this is possible. So I think you have people out there who have milder clusters with fewer triggers and so maybe that person discovers that when they stop eating salad olives they have much shorter cycles but that's not to say that anyone else will be effected the same way. They might even announce on a website that they've discovered the cure for cluster headaches and that's all you have to do is avoid eating salad olives and they can't understand why everyone else is still having so many problems.

    So on the subject of my triggers, I have come to believe that my mere existence is a trigger for my cluster headaches. I really have tried eliminating one thing or another. Keeping long lists of things that do seem to effect the duration and strength of my cycles and attacks. But in the long run it's only been a few things that I know for a fact I can't tolerate and that will make my cycles worse. Keep in mind, I don't believe that these things start new cycles, I only believe that they bring on extra attacks or increase the length and severity of attacks that I would normally get. I also don't believe they extend the length of a cycle but they may appear to have that effect because I believe in the beginning and tale in a cycle I am having headaches that are so weak that I don't perceive them as being painful. This is a somewhat difficult concept to explain but I describe it as "feeling stupid" or being spacey. I think that the things that might trigger my headaches are actually not triggering anything at all but possibly instead just making the inconceivable seeds of existing headaches perceivable and painful. Of course this is all just personal theory. It should all be taken with a grain of salt.

    So where are these triggers I have?

    1. Alcohol, I pretty much don't drink anymore. Even when I'm not a cycle it's become somewhat of a Pavlovian response to say no drinking I put any kind of alcoholic beverage across my lips and I'm going to pay for it it's just that simple. But having said that there are a few rules. Champagne is the worst. Any kind of wine is the next likely to give me a screaming headache, and then from there mixed drinks with hard liquor that is dark like whiskey and beer seem to have about the same effect headache wise then surprisingly little lighter in color and the more pure the alcohol becomes the less likely it is to give me a headache. So if I am drinking, I tend to drink things like vodka martinis.

    2. Raw garlic, if I'm out at a restaurant and ordered something that I didn't read the ingredients of very carefully and I crunched down on some undercooked garlic, then it's pretty certain that I'm going to have a pretty bad headache that evening if I'm in a cycle. That really sucks too because I love garlic! This is also a bit true of strong onions and similar pungent food ingredients. Cilantro for example is particularly bad if I get a mouthful of it. It's just so perfume-ish. Which brings me to the last trigger in my list...

    3. Strong perfumes, just about anything that people wear normally I can't put on my own body, it will give me a headache and not just cluster headaches, it will give me a normal headache as well. I use a deodorant that has no odor and any cologne or sent that I wear has to either be made from natural oils or of a very high-quality. So as a consequence I really don't wear a lot of cologne. As an example of how bad this actually is, I cannot walk through the main entrance of most department stores I can't make it past this cosmetics counters without my head starting to throb.


    I find it very interesting that the hypothalamus seems to be the key. My personal belief they will find at some point that the hypothalamus itself were some part of the brain near the thalamus is actually malfunctioning prior to cluster attack. I haven't read anything new on this, I think the last materials I read may have been two or three years old. Some curious if you've seen newer research. I also have pretty serious sleeping disorders which are not just related to incorrect breathing but also seem to involve chronic insomnia and inappropriate daytime drowsiness regardless of how much rest and getting during the nighttime hours also as I mentioned above sleep in my sleep patterns seem to affect my cluster headaches. So it all seems to come back to Mr. hypothalamus. One thing that I just read recently which I found was very very interesting is that the hypothalamus actually is involved in controlling our perception of pain. Now that's kind of unfortunate to have part of your brain that a functioning and causing you pain to also be part of your brain that deals with the perception of that pain, kind of like letting the madman run the asylum. Of course, that's just speculation on my part, the fact that it is involved in perceiving pain to have nothing to do with the intensity of cluster headaches in fact it probably doesn't since the brain itself doesn't feel pain.


    I was currious about your intrest in magnetic field therapy. I read about work being done in this area three or four years ago for people with bipolar disorder, who have epilepsy, or migraine. I haven't read anything specifically detailed about it being used to treat cluster suffers although I have seen the last couple of years that some papers have been published where it seems to get mentioned. The explanation of why the researchers thought this worked for epileptic patients and migraine patients made perfect sense to me and gives a lot of weight to the idea that clusters and migraines are closer to problems of the brain than the vascular and tension headaches that most people are used to. I'm really hopeful that this research leads to effective treatment it's noninvasive and nonchemical. I would love to walk in for a once a month appointment to get my brain zapped. So have you found out much more about this? Is there anyone currently treating cluster patients in this way that you have discovered?

    Well it's almost 4 in the morning, and I should probably get to bed before I fall asleep in the little floor at a usually do. I hope you and your husband are doing well, and but of course I mean I hope he's not currently having cluster headaches. :-)

    By Blogger Murdock Scott, at 4/28/2008 4:04 AM  

  • Hi Elizabeth,
    I'm Doc's wife, and I'd love to talk with you about what you're going through with your husband's cluster cycles. I'm sure that we have a lot in common in that regard. Especially when he is going through a really difficult cycle, it helps me immensely to have people to talk to who understand what *I* am going through as well. It's excruciating for our cluster sufferers, but it's also tough on the supporters. I think that it's totally normal to get angry -- I know I do at times. If you like you can e-mail me at katy at katyscott dot com.

    By Blogger Katy, at 5/05/2008 4:23 PM  

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