I had some time this morning so I attempted the cluster survey.

Sorry DJ but I found this survey completely biased toward maybe just a few individuals own headaches and non representative of the CH population as a whole.

Its assuming we all take medications of a specific type and all respond in kind.

Its assuming all can abort a headache.

Its assuming oxygen works for everyone.  It does not.

At the 50% survey completion mark it no longer makes any sense.

Maybe this could be beneficial for someone who suffers mildly but I see no value in releasing the survey to medical personell as it will only decrease the ability to properly diagnose and treat clusters over the entire CH population.

All the questions have been written to support the designers opinion of CH and their assumption that oxygen is the only answer.

I just hate to see this kind of biased and uninformed work put out there.

My apologies to those who endeavored to put this out there. I do appreciate the efforts.  Many of the questions and answers are just wrong and may be misleading to the medical community if that is the surveys intended target..

The surveys done on this site (CH.com) by DJ do make sense and better medical info can be gotten there.

Just another opinion on the opinion pages of life and living with clusters.

I did the survey and the survey say's!!. Surveys are always incomplete and ambigous. :P Better than not saying anything though. Hope it helps. ;)
all the best
the bb

Yep.
I was thinking the same. I had to bomb out on this one. :-/

JOHN

MJ

I am one of the individuals that helped initiated this survey and helped to get it to what it is today! (I have a very small part)
and must say I find your comments some-what disturbing!
If we don’t try, if we don’t do, we are the losers, if we do, and get opposition we are the losers, you might
find it completely biased….. but we try, we take things into our hand and try, and make
a (big) effort, to promote our situation, be it in the medical world, be it in the chain of supply for
specific equipment to fit our needs, or be it medicines to fit our needs.
To criticize is good, as long as you can offer a better alternative! and get it from idea to reality

I am very insulted!

Some better individuals then me have put time, effort, and a lot of hard work and professionalism into this
you can not just write it away with a simple post!

I do ask every one of you do take this survey…… the information that will be generated from this
is important for all of us…….. it will give us a better and comprehensive understanding, to be used
in the search for a better way to fight CH!


Michael

Here we go.

Over a survey.

I did not find it slanted to o2 users.  It even asked if I had heard of o2 before the survey.

I had a few problems.  In a few spots,  I had to pick an answer or could not continue - when the question prior I had indicated it did not apply to me.  Also, I could not remember the dosages of previous medications and forgot a few meds, and also I used some meds more than one time at different dosages.

Charlotte


ps  Michael, do not  be insulted.  People are entitled to their opinions.  Although you contributed, this is not about you.

I'm sorry you felt the survey was biased, however, an oxygen therapy group was in charge of this, so I guess they would be a little biased!  lol  In that way, an LSD study would be biased to you too if you didn't participate in LSD therapy...or shrooms or Imitrex.  

The information they are wanting to find will be very important to physicians, therfore, hopefully finding it's way to the insurance companies.  In Dallas I sat in on a meeting that discussed the frusrtation of clusterheadache sufferers and their insurance coverage.  THIS information gathered will hopefully give them an understanding how crucial oxygen is to some, thus making it easier to gain, and might even ease the financial burden as well.

We have sent this out to over 6,000 people, and I'm sure not everyone will be "spot on" for this survey, But that's the point, to find out how different each sufferer is and why some therapies work and why some don't.  

I'm sorry the survey didn't line up with you, but we appreciate the effort.  

We urge each of you to try attempting the survey.  This information you will be providing could be a new breakthrough for the cluster headache community!

Thanks again!

Steph

I to thought is was way too biased on oxygen. I did finish the surrvey although I have never tried O2. Please don't tell me to try it as I am un-employed with no insurance and I am just dealing with my K-9's to K-10's nightly

Well, I hear that 02 is pretty cheap.  

Quote:

Please don't tell me to try it as I am un-employed with no insurance and I am just dealing with my K-9's to K-10's nightly

I think you should try it. You wouldn't reget it. It works well and no one should try to get through a k10 with nothing. That is dangerous.
all the best
thebb
I you need help to get it, just ask.

Hang in there, gsockrider.

Just finished the survey, which is not the best designed one I have ever taken. I'm glad, however, that someone is attempting to do something, and hope that it eventually leads for more PF time for any or all of us.

gneicco

gsockrider wrote on Oct 14^th, 2008 at 10:21am:

I to thought is was way too biased on oxygen. I did finish the surrvey although I have never tried O2. Please don't tell me to try it as I am un-employed with no insurance and I am just dealing with my K-9's to K-10's nightly

   All ya ever do is whine about no insurance and no money.  Take charge of your life.  Get welders oxygen.Lease the tank don't buy it. the rest will happen.

                   Potter

I hope that there will be a general survey one day - you know, the kind the rest of us (non- Americans) and also reply... ;)

So, because I cannot reply, I didn't take a look at it. But, I like the idea behind it and my thankyous to the hard-working bunch of people behind it. :)

Sanna
who loves surveys

Yes the survey was very biased to those of us that o2 dosn't work, it could have been set up better and had a few snags.  I was also frustrated when I finished the survey because of the fact that most of the survey was about o2 and I was hoping that this survey would help all cluster sufferers.  But I do see that the good people who made this are trying to help and show doctors and medical suppliers the lenghts that a ch'er will go to find relief.  To the people who made this survey dont take the comments here personal take the info here and continue the surveys and hope that you can find a way to help as many sufferers as you can.

  Thank you for trying to help,     Phil

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

sandie99 wrote on Oct 14^th, 2008 at 3:05pm:

I hope that there will be a general survey one day - you know, the kind the rest of us (non- Americans) and also reply... ;)

I did take a look a the survey; I was totally excited to. But since I'm not in the U.S; I couldn't complete it...at least that's my assumption? Correct me PLEASE if I'm wrong. I applaud the efforts of the people who made the survey possible!!!

As one of the "pre testers" in the survey, we were given the survey months ago and asked for opinions and suggestions which as most of you know, I've never been shy about giving.

I don't know what the other pre-testers did, but I offered many suggetions and opinions and on the final survey most of these were changed or incorporated into the survey.

Nothing is PERFECT, but I feel it was a good survey and applaud those who worked so hard to put it together to TRY to help those of us who are suffering from CH.

As one who has USED O2 for more than a decade I've seen changes in the use occur and without some research this would not have happened. Yes, I'm better off today than I was a decade ago using O2 but without research I wouldn't be. I now know that 25lpm works better than the 8lpm I was originally started on. And so does my neuro because I told him. He now prescribes 15-25lpm regulators thanks to research of a few.

In Dallas I was in "bad shape" but was fortunate enough to meet some wonderful people and be put in a "research" program on some new uses of O2 therapy that have given me a new prespective and some PF time that I didn't have before. I'm very optimistic right now where before I was in a state of depression. If this survey will bring relief to one or two CH sufferers then I'd say it was worth it.

Of course that's just my opinion, but as I've said before, I think everyone is entitled to it.

Hugs BD

I tried to take the survey, and Batch, you are right there are dependency questions, however, if I had responded that I didn't use one form of treatment, or it didn't work and another question was about how I used that treatment, I had no choice but to answer it, even though it was wrong.
Quote:

In a few spots,  I had to pick an answer or could not continue - when the question prior I had indicated it did not apply to me.

 The simple option of having "N/A" for an answer would have been very helpful for most questions.

I could not proceed past a question on clustermasx usage, even though I answered it, so I stopped there. I hesitate to try to finish it, due to providing answers that are not correct to questions that have only certain options, therefore, skewing the results.

It is good to see the survey, I believe docs, insurance companies, and yes, O2 companies, along with CH'ers would benefit from it, and maybe in the future we could have a more fine tuned survey.

Michael, I can't see why you would be insulted by someone's opinion, but let me take this opportunity to apologize in advance in case you feel the same about mine.

Oops.  I posted these comments in a thread on the general board and took a little ridicule for it.  I guess they belong here


Quote:

IMHO - a poorly constructed survey.  Many questions with a fixed list of answers to choose from just don't have an applicable answer for all. Seemed very heavy on O2.  Made me wonder if an Oxygen company was sponsoring the thing. ~~~~~~~~~~~~~~~~~~ I see the thread does cover some of the problem questions I was referring to, like the ER doctor question.  I've never gone to the ER so how do I answer yes or no to whether or not the doc was familiar with CH?  There are a few like that.  You are required to naswer the question so I just checked any old box not liking the fact I would be skewing the results.  Should have had an N/A choice. ~~~~~~~~~~~~~~~~~ I also didn't realize it was a home grown survey.  I thought it was developed by a professional survey company but now realize it is only being hosted by a survey web site. Surveys are good things.  The surveys on CH.com have what, 10,000 - 12,000 responses.  That has to be the largest CH survey ever conducted.  In Atlanta, John Graham said our nubers were our largest asset.  I think he was correct.

I want to second or third or whatever we're up to here the thanks to those who put the survey together. I'm not sure how you could argue that it was biased toward oxygen.... there were plenty of questions about other abortives, some I'd never heard of in fact.

I do note the comments about non-applicable questions and the lack of an N/A option; I too had to answer a couple that didn't apply to me merely to get to the next page. But that's a relatively small point (I think?) that I hope won't skew the results too heavily.

Mainly, we need all the help we can get! And if this helps doctors or insurance companies, let's support it, hey?

David

I'm thankful for ANY kind of survey, news article, study, etc.
We get little enough attention paid to this condition.

So the survey may not be perfect.  What is?  It may not address each and every situation.  Cluster patient reaction to  prevent drugs and abortive drugs is unique to each individual.  The condition is as individual as the sufferer.

This survey was construction with attention to 02 usage.  No?

Blake has not completed the survey as of yet but most certainly will.....perfect or not.  At least it's a step and I appreciate the effort and hard work of all individuals involved.

My Daddy would say.....some people would bitch if they were hung with a new rope.... ;)

Be well....
Jackie

Yeah, there's some bumps in the way the survey works.  But in general, I was able to give the "best" answers that were most appropriate to me.  This certainly was more worthy of my time and effort than the dumb irrelevant surveys that I need to take occasionally at work.

Jon

yes the dependancy questions were  frustrating but were needed to validate the survey.
to whine and complain about something without constructive idea's to improve is , well i wont say.
as far as the questions that were not particulary relevant to a persons situation, one has to remember the goal and focus which was to raise ch awareness and help people. please think of someone other than yourself.  if it doesn't help you it may help others someday.

if you don't like this post , please dial 1-800-waaa  extension/ I didn't get my way
[smiley=referee.gif]

Batch wrote on Oct 14^th, 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.

Ditto what MJ said.  The fact that a number of people registered the same concern (what the sheep call complaining) give it creedence.  With these posts at least it's known that the results of the "Was the ER doctor familiar with CH" can be thrown out because the responses are skewed (as well as any other similar questions with forced responses).

My appreciation to those who gave their time to create the survey as well as answer it.  I hope it reaps some benficial results.

Thankyou.

I received the survey by email but found out I couldn't participate. So I wanna ask the following:
will there be a survey for the Europeans among us? I would love to do my little part.

Pascal.

Don't be so restrictive. I bet the guys from Asia, Australia, South America, ... want to participate as well.

Oliver

I will make sure that the responses here make it to the "surveyers".  I feel it's important that they read what this community thinks and feels about this.  If they don't have something going for non US citizens, maybe this would spark an interest to do so.

Again, we thank you for taking time out of your schedules to participate in the survey...perfect answers or not!!   ;)

We have been informed that this has been a huge success already, so those that haven't yet taken it, please do so as soon as you can!

Thanks!
Stephanie

gizmo wrote on Oct 19^th, 2008 at 8:52am:

Don't be so restrictive. I bet the guys from Asia, Australia, South America, ... want to participate as well. Oliver

But off course, Oliver. Just didn't think of that haha. Had a drink or two yesterday.

Pascal.

maalstroom wrote on Oct 19^th, 2008 at 9:37am:

Had a drink or two yesterday.

Then you are excused.  ;D

I have a feeling that these concerns will get back to the people who put out this survey and these concerns will be addressed.

Hugs BD

I just took the survey and was honored to do so, got to say I must be a sloooow reader, it took me over an hour. Their was some great questions, but I was disapointed not to be asked if I was a lefty or righy..I want to thank all the fine people for for their time in putting this together and giving me the oppertunity to be a part of this..

Shark Boy