Batch wrote on Oct 14th, 2008 at 4:06pm:MJ,
I read your comments on the cluster headache survey with great interest. I’m sorry you thought it was biased and filled with unwarranted assumptions. That was never the intent. On the contrary, a lot of effort went into making it as comprehensive and as definitive a study as possible by a group of dedicated people including DJ, in the hopes the results would clearly benefit all cluster headache sufferers.
That dedicated group consists of motivated cluster headache sufferers, two of the top neurologists in the Nation specializing in our disorder and its many strategies of treatment, as well as another group of skilled professionals with years of experience in generating and conducting on-line medical surveys using a best practice approach. The survey was also tested extensively prior to release over a two-month period by a statistically significant number of episodic and chronic cluster headache sufferers. The analysis of their surveys and comments collected during pre-release testing indicated none of the bias or errant assumptions you claim it contains.
Ordinarily, I would be concerned by the potential impact comments like yours would have on an effort like this. However, as it appears you have another agenda, I checked with the folks in charge of conducting and monitoring the survey. So far it appears your comments have not had any perceptible effect on the numbers or rate of response by so many others who continue to take and complete this important survey.
As you say, yours is just another opinion on the opinion pages of life and living with clusters. In as much as you’ve had the opportunity to state your opinion, there’s no reason why I shouldn’t state mine... I think you’re wrong and for whatever reason you made them, your comments are baseless… That’s just my opinion.
The neurologists associated with the development of this survey see more cluster headache sufferers in a day than most see in an entire career. They are well aware the level of information held by the medical community in general about our disorder is insufficient. These same neurologists made every effort to ensure the survey was constructed to sort fact from fiction in statistically significant terms so that it could be used to educate cluster headache sufferers, neurologists, healthcare providers, payers, and regulators alike. So there is a bias in one respect… and it’s to help cluster headache sufferers. That’s a goal and a fact.
However, as it’s not clear you actually completed the survey, you may not have noticed it was constructed with dependency questions to cross check responses in order to ensure consistency and that any conclusions drawn from the results are statistically valid. It’s also possible you failed to notice many of the questions came directly from the excellent surveys DJ conducted here on CH.com. What may not be obvious to the least casual observer, are the rules governing medical surveys like this one. These rules cover how the survey data is collected, compiled, analyzed, and guarded much like rules of evidence so they can be certified and verified. As good as the surveys DJ conducted here on CH.com are, he didn’t have the money to make sure these rules were met. That’s another fact.
Your comments on cluster headache medications are confusing. The list of abortive, transitional, and preventative cluster headache medications listed in the survey were selected from National Standards of Care and Treatment guidelines. These are also the mainstream medications that can be prescribed legally on or off label to treat our disorder. That’s also a fact.
What I find most confusing are your comments about oxygen therapy. It’s hard to tell if oxygen therapy doesn’t work for you as an abortive, or you just don’t want it to work… Can you give us a clue? If used properly, as early as possible, and at a high enough flow rate, oxygen therapy should work effectively to abort most cluster headache attacks most of the time… and when it doesn’t, we need to know why. Finding out why involves a process of time, research, and studies… This survey is part of that process, and all that costs money… How much have you got? That’s not an assumption… It’s a conditional statement of fact and a question.
Take care and apology accepted… If you’re still having problems making oxygen therapy work for you as an abortive, please let me know. I may be able to help. I’m the grand poobah of oxygen therapy and one of the chief instigators of the oxygen group here on CH.com that Steph pointed out is responsible for this survey.
V/R, Batch
Batch and all
Hi
First I have absolutely no doubt that the survey was developed with the very best of intentions and I do appluad all of those involved.
If the survey were labeled Oxygen therapy and cluster headache I would have no issues.
Second I believe my comments may have caused a couple more to participate if only out of curiosity.
I have no other agenda whatsoever Batch, other than the survey does not cover the bases fully.
Unfortunately I do not have the solution either.
The main critiscism I have is that the survey is allready skewered by my completing it. I was forced to answer many questions incorrectly to get to the next.
Reading a few other responses I wasnt the only one that had to falsify the answers.
The medication comments are just that and shouldnt be confusing. The answers are that none of the meds listed in the survey ever worked for me and the only ones untried by me would be lithium and melatonin.
The survey wont let you continue unless you provide a response to the developers liking.
Now regarding the oxygen therapy.
Oxygen has to be one of the easiest and best abortives for a substantial percent of the CH population. I would certainly encourage all sufferrers to at least try it.
You asked about my oxygen use. I will expand a bit.
I have suffered with CH for 34 or so years, I am a variable episodic, my cycles at the shortest ever were at 4 months and the longest ones at 3 years. I have never had a variation in the hits in all the years, I did have a couple of year long breaks in that time. I allways get hit from 8-10 times per day, allways at 1-2 hrs a hit. Untill very recent years I never experienced a lower than K9 attack nor did I ever medicinally fully abort an attack..
One can only imagine the lengths I have gone to find relief. I have seen some of the supposed best. From the mayo clinics to universities to new age healers to indian shaman. I have tried drug after drug, tested for every allergy known, had my nose, eyes, ears and pimples inspected, my DNA read, foods analyzed, brain scanned, blood tested, nerves prodded, gases given, heart scanned, and on and on. All those years My CH had remained resistant to any and all treatments tried.
I have used oxygen through a tube a bag a pipe and a hose. I have a taken it straight up untill my cheeks allmost popped and my lungs could explode. I have a proper mask, I have a multigas mass flow meter that registers to 1000 liters per minute that I have hooked between a mask and the tank Allways with the hope and belief that if I try it one more time.
The only results I get with high flow oxygen above 10 LPM is an increase in the pain, a sharpening of the pain as though a 3rd demon has decided to play as well. You dont want to know that feeling at 25 LPM. There are not words to describe what O2 can do when its not a benefit.
Apologies for the ramble, I am only trying to show that O2 does not work for all and there are others here in similar situations.
My real fear with the survey is that med personell will take the skewered results and assume that since one doesnt meet said survey statistics the they must not have CH. (someone here may say that) We are now back to step one.
Only 2 things have ever fully killed a CH for me.
Mass adrenalin rush and my current trial and error treatment.
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