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Posted by Todd ( on February 12, 2000 at 20:01:34:

A few things keep seeming to come up frequently lately. gary's done a great job responding to most of them, but I feel the need to add my input.

I agree that we always seem to have a few active posters who most likely don't truly suffer from clusters. This is unfortunate, but unavoidable. Caveat emptor means 'buyer beware'. Not sure what 'Internet Message Board Reader beware' translates into in Latin, but we need to remember the concept.

I also agree that everything about CH is variable...from what meds work THIS time to what meds work for EVERYONE (none!) to the detailed symptoms of each cycle and attack. Nonetheless, we need to be very careful about jumping to conclusions without meaningful data. When I was in remission for 3 years (yah!!!!), I hadn't eaten macadamia nuts during the entire time. BINGO! Cure!!! Macadamia nuts are the trigger!
Except....I still haven't eaten any macadamia nuts and I've had two cycles since then.


Don't get me wrong; I'd love to find that it's the chlorine most municipalities add to the public water supply that cause/triggers/aggravates/whatever clusters, but it just isn't going to happen.

Now, on to my personal pet peeve---following the directions. gary alluded to this in one of his posts, but I'd like to go a bit deeper.

Let's use my favorite and one of the (almost)universal abortives for clusters: Imitrex.
If anyone can explain the chemical differences between the injections, nasal spray and tablets, I'd love to learn. The way I read the leaflets, it's all the same stuff. So how can one form work for you and the other not?

Here's my interpretation...the same way a 99.9% effective birth control pill results in 10% pregnancy rates among users. In the manufacturing and computer worlds the phrase is Operator Error. Click the little 'X' in the top right of your screen and you can't blame the puter or Windows for 'crashing' your program.

I've never tried O2 for my attacks, though I plan to next go-round. I also plan to make sure I'm using a non-rebreather mask at 8-10 lpm, because that's what those who have found it beneficial say it takes. So many have said it helps that, frankly, I dismiss those who say it doesn't.

By the same token, if Imitrex tabs or spray don't work for you, you have to consider your application technique. I've never seen a single post saying that the tabs worked but the injections didn't. Do tabs and spray take longer to kick in? Yup. Does that mean the 'don't work'? Nope.

Why is this such a hot button with me? Well, I doubt I'm the only clusterhead who has a phobia about needles. Nothing at all to do with pain...in fact, as for the Weekend Topic, I toss my hat in the 'high tolerance' camp. I just have a psychological difficulty dealing with the concept of consensual stabbing. And I hate the idea that there may be other clusterheads like me out there who don't even try the spray or tabs because they've heard 'only the injections work'. BULL! Tabs work for me within 15 minutes approximately 95% of the time. The spray did the same, but I didn't care for the 'post-nasal drip' (nasty tasting stuff!). I can see how they can be more convenient when out and about, and have used them a few times.

Bottom line, please post all the first person accounts you have. The accumulation of anecdotal data is about all we have going for us.

BUT, a post that says 'didn't work for me. nt.' does little good.

We suffer from a very complex, little understood and barely known disorder. To date, the only interesting bit of scientific data is that ONE study using brand new and unproven technology APPEARS to have demonstrated that we have enlarged hypothalmi. When asked what this means, the research scientist who conducted the study said (in more technical terms) " Who the heck knows?" This in no way belittles or dismisses Dr. Goadsby's work--so far it's the only hint we have. But let's keep grounded folks. At this point, EVERYTHING is a theory, an idea, a concept or anecdotal. Let's add to the limited body of knowledge with the most factual, complete information we can, not further the confusion with protestations based on a single experiment that didn't conform to the requirements of the therapy being utilized.

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