recently ive been thinking about this alot

it always seems an up hill fight where we have to
educate the doctors...i know i have had to a few times esp in japan

im always thinking "what is a doctor?"

well they have been to uni for a long time....
yeah....
so what does that mean?

it seems that the people here know more about stuff

but then we always put at the end of our posts..."but im not a doctor"

i take the advice that i have been given here more highly than what my "doctor" has said.
"crazy" you say.....
but im into my 6th year of university.....not into medical field i would admit but i know how to read....
how do these doctors learn about us?
a 1 hour lecture of their study?
i couldn't count the hours myself let alone the ppl here have done in research.....

two things here i think play importance..

first....research and knowledge....
doctors are "i hope" given the chance over the years to explore the human body and examine what the hell is going on....lol

second experience.....
me"i wanna die"
doc"its ok just take this pill"

i think the later is what is what i see happening now....
they would never understand....ever...unless they are in the same place as me....

but here i can read and feel the real world of cluster headaches...

thank you...

"an analysis of us" Simon bull"

cyberone wrote on Jul 24^th, 2008 at 12:05pm:

how do these doctors learn about us? a 1 hour lecture of their study?

More like 10 minutes.

Quote:

-------------------------------------------------------------------------------- It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain. - Guiseppi

I think this pretty much sums it up for me.
all the best
thebb ;)

It is the truth but every time I explain myself to a Doctor that's one more Doctor that can recognize another clusterhead and know how to treat them.  

To me, it's worth the investment.

I just came back from my Neuro.  At the end of the appointment I thanked him for his open mind and willingness to work with me.  He looked up and said "you know more about cluster headaches than I do".  That would probably bother you.  All I could think was "and he knows more about them every time I visit"  ;)

Row the boat!  Educate every Doctor you meet.  Save family members you'll never meet.

-Dennis-

I've had the same experience as DennisM...

My doctors here WON'T prescribe melatonin but are supporting me through taking it with regular check-ups etc.

I went to my doc yesterday with non-ch related stuff and he was disappointed!! He's taking an active interest in the condition and is learning from my experiences which is good, because I know there's another person with 'CH' there being treated with painkillers by another doc at the surgery (a horrible one who shouted at me about o2). Perhaps this person will either get a correct diagnosis or correct meds.

Like you say, we're spreading the word and making life easier for future ch supporters...

Doctors are like wine.

Some years are good and some are bad.

If you ask someone’s advice, you’ll get there opinion.

If you study up, you’ll already know what vintage you want and will be pleased with your choice the first time.

Therefore: make an educated choice the first time and you’ll not have to drink a lot of bottles you don’t like, or spend your time dumping the bad one’s you paid for down the drain.

Why is this us vs. Doctors??

Aren't we supposed to be on the same team?

You do need to remind yourself that most doctors do care about treating you.  If you approach them with a good attitude, chances are they will work with you and be more receptive to information you bring to the table.  Just remember thanks to the internet and TV, people come in diagnosing themselves with what they saw on dateline or the local news.  Also, people come in with remedies they read about on the internet or that Aunt Rose told them about at Thanksgiving.

For doctors, it is very tough sometimes to treat people because they come in thinking they know what is wrong and how to treat it because of an article they read or a report they saw, hen they dont even have that affliction.

I am not excusing bad doctors or doctors that dont listen, but my doctor told me once that the week after the local paper did an article on fibro-myalgia, he had 2-3 patients an hour coming in with a self-diagnosis of it.

Anyway, keep on prepping yourself for each appointment and fight for the things you need, just remember that your doctors are people too and MOST have your best interest at heart.  A good relationship with your doctor will help you in the long run.

this message is brought to you by a collection of doctors, their spouses, and their children

Remember, please dont show up at a doctor's house for medical issues and expect her husband to welcome you into their home to ask the doctor medical advice at home when your doctors office has a doctor on 24 hr call who will speak to you any time.

Just my.02546 cents.

Well cyberone, I understand you, but I also TOTALLY agree with FramCire's post.

First of all
it seems that the people here know more about stuff
but then we always put at the end of our posts..."but im not a doctor"
Do you find it as something strange? I don't. It's quite normal that we, patients, very often know more than some (I think bad) doctors. Obviously WE are the sufferers and you we know much from our experience (also a doctor doesn't have to know about some "alternative" treatments, they must base treatment on their medical experience and knowledge). About "im not a doctor" - obviously we don't know about all meds interactions etc. also similar sympthoms (headaches) can be a sign of something really serious so we shouldn't "diagnose" anyone new and rather let him visit a real doctor.

how do these doctors learn about us?
a 1 hour lecture of their study?
Actually... is it their fault? There are houndreds diseases of all and doctors have to learn about most of them (well education system in each country can be a bit different) and then gain deep knowledge in their specialization, which is, in that case, a neurology. Also don't forget that many doctors are experts in some small fields. I am sure many professors of neurology, who are for example Alzheimer or SM experts, wouldn't be able to treat CH properly (and vice versa).

Doctors are like wine.
Some years are good and some are bad.
Indeed... I have met many doctors in my not that long life and some of them were just average, some of them were bad and overpriced or even horrible (black sheeps :P) but I have also met a few wonderful doctors (e.g. my current neurologist) who propose all that stuff (I mean most common meds) w/o any suggestions from me.

Another example - young "family doctor" (don't know how to call it in English, someone who you visit when you have just a flu or someone who can direct you to proper specialist) in my ambulatory. He seems to know EVERYTHING. It would be enough for is work if he knows about basic diseases and basic sympthoms or more serious diseases but he seems to know almost EVERYTHING. Really, I ask about something really rare and then he gives me a small lecture about that  :D

Best regards.

I was diagnosed at a large TEACHING hospital (Scott and White) so there are a "few" doctors on the market who actually KNOW what a CH is - where they are I don't know, but they have been exposed to them.  :)  Maybe they'll recognize them if someone shows up in their office with one.

As far as diagnosing yourself. I agree with Fram -- you can't just walk in and TELL the doc... you've got to "listen" also.

But that being said, you've also got to be your own advocate. Question the doc. ASK how many cluster patients he/she has/is treating. What treatments he/she thinks are best. Etc.  

I had an "older" GP (retired now) who would call me when he had a ptient with really bad headaches, describe the headache and ask me if I thought it was migraines or CH. We usually referred them to my neuro for tests and a "second diagnoses".  ;)  

It's always amazed me WHY someone would want to have a disease (like the ones on TV) when they're perfectly healthy. But doctors have always been bombarded with cases everytime a new disease comes out. Truth be know I'll bet there's a lot of women who have gone to their docs with prostrate problems since there's been a lot on the news about it. :D

My advice to you would be -- Find a doctor you can "communicate" with and listen as well as talk. You can "educate" each other...

Hugs BD

BarbaraD wrote on Jul 26^th, 2008 at 8:49am:

But that being said, you've also got to be your own advocate. Question the doc. ASK how many cluster patients he/she has/is treating. What treatments he/she thinks are best. Etc.   It's always amazed me WHY someone would want to have a disease (like the ones on TV) when they're perfectly healthy. But doctors have always been bombarded with cases everytime a new disease comes out. Truth be know I'll bet there's a lot of women who have gone to their docs with prostrate problems since there's been a lot on the news about it. :D My advice to you would be -- Find a doctor you can "communicate" with and listen as well as talk. You can "educate" each other... Hugs BD

I agree with everything you say.

As for your question, there are many reasons why people want to have these diseases.

1.  It's an excuse for lots of things.
2.  It gets them attention.
3.  Possible drugs or disability pay.
4.  Suggestibility.

those are just some of the reasons people do that.  It sucks because real sufferers have a harder time being diagnosed because of this.

I don't think it's us vs Dr.s but let's face it, a Dr spends maybe 10 minutes with you and in the end they are going to diagnose the most common thing it could be - they are playing the odds and it works most of the time. That is why we have to take the time to educate ourselves and go in with all the research we can.

Remember, this doesn't just apply to CH. When my mother had a horrible pain from her chest down to her stomach, she went to the Dr who gave her a heartburn medication; which seemed logical. My parents knew it wasn't that and went back, several times, demanding that tests be done. (this was before everyone had access to the internet) Long story short, she died three months later from pancreatic cancer.

We have to be our own advocates and we are fortunate to live in a time that so much information is at our fingertips.

Great thread with some awesome points made. I always end my posts with "I'm not a doctor." As angry as we sometimes get with doctors, they do know a lot. They know how some symptoms can mask more serious symptoms, how some medications can interact, dangerously, maybe even fatally, with others. So I agree, most of us know more SPECIFICS  about CH then most doctors, but please don't abandon the advice of your doctor. As frustrating as it can sometimes be to communicate your knowledge, to a doctor, I would be wary of completely taking over my own treatment plan. I know a LOT about CH, but recognize that when it comes to the field of medicine, there is still so much I just don't know.

Just Joe's 2.5 cents worth!!!

Guiseppi