I think this site is extremely useful and I would just like to point this out first, however, what is with all the doubt?

I know from my experience with CH and my own research that I definitely have this condition so why when I ask for advice and help am I made to feel like I have to prove to people that it is true?

I have some very 'text book' attacks that come like clockwork and I also have different headaches too normally as a result of banging my head on a wall during an attack. I have only recently been diagnosed but I am 100%sure that I have this condition. I ask you why I should have to go over everything that I suffer with people on here just to be taken seriously I have found the information extremely useful but the message board is full of people that want you to prove you have the condition before they will listen to my concerns or questions. If something doesn't work for me but works for you or the other way round that doesn't mean that I don't have the condition. We could all benefit from some people getting off there high horses on this as we all suffer as much as the next person with this condition.

I just read your 5 posts and any responses you recieved.  You had exactly one person doubt the diagnosis that a dr. gave you in the ER.  (I'm going to assume it was just the other day, as you said "I just got home") 

The person who said that is one of the most intelligent posters we have on this site, as well as one of the most supportive to newcomers.  As you can see from his abstracts and fairly heavy reading materials he always links to..he is a man of science and after suffering from CH himself he knows how difficult it is to properly diagnose CH as most drs. are incredably mis-informed about this condition.  He... and all of us, for that matter are acutely aware how CH symptoms can and very often DO, mimic other diseases.  We've seen it here over and over again.

I understand pain of any kind can make us sensitive and cranky, but I assure you..no one had the intention of insult, slight or getting on their "high horse"

   Welcome Aimee   :)

Not feeling very welcome.

As informed as that person maybe I do not believe the best way to help a newcomer is to act like they don't know what they are talking about I HAVE done my research.

It is not just my post its many if you read them a lot of people have to prove to you guys that they have the condition. I don't need that nobody does.

But hey thanks for you help I am sure I will use this site for info but im done with the message board.

We hope that you DO use this site for info and we hope that it helps you find something that will work for your clusters. Thats what it is here for.

If you decide to not post anything more on the message board, thats ok too.

Hi Aimee


Quote:

My doctor in the hospital was very good don't get me wrong. Its just his knowledge on the subject wasn't great.

This is from one of your earlier posts and I've bolded the key part.

This is actually a pretty complex area of medicine, so in order to get a correct diagnosis, especially when there are multiple other potential causes of near identical symptoms is not simple, but it relies on a significant body of knowledge and experience, beyond that of most GPs and many neurologists.

There are several posts about what can cause cluster like symptoms that is well, well worth a read - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Given that many of these other non-CH issues can need urgent specialized treatment, which is different to CH treatment, this is precisely why people are urged to seek a diagnosis or a confirmation from a headache specialist.

A year or so ago there was a post here where someone who had CH was talking with someone (think a work colleague) who had what to them seemed to be text book CH, but still urged them to see a specialist. It turned out that they had a brain tumour, not CH, that could have been otherwise fatal.

There have been other cases where people have been incorrectly diagnosed by GPs and then given drugs at the high doses that people with CH need, which are significantly higher than normal use (e.g. verapamil) which can cause further issues.

This is why people want to make sure that people have got the right diagnosis, which is something that we can not do ourselves.

Once there is a diagnosis, people are more than happy to help and give advice, as you'll see from reading multiple posts here.

I hope you do stay around as there is so much to learn from here. I know it has made a very significant impact on my life, from being in a downward spiral due to CH, to a total turn around, just from getting great advice plus understanding from people who understand what it's like to get CHs.

Quote:

A year or so ago there was a post here where someone who had CH was talking with someone (think a work colleague) who had what to them seemed to be text book CH, but still urged them to see a specialist. It turned out that they had a brain tumour, not CH, that could have been otherwise fatal. There have been other cases where people have been incorrectly diagnosed by GPs and then given drugs at the high doses that people with CH need, which are significantly higher than normal use (e.g. verapamil) which can cause further issues. This is why people want to make sure that people have got the right diagnosis, which is something that we can not do ourselves.

THAT is exactly what I was trying to tell her but you put it much better than me Mike.  I remember that person too and we all felt so badly.  Over the years there have been others too.  Not necessisarily a brain tumor, but so many other conditions that mimic CH, almost to the letter.  Not to mention the reverse..where folks have had perfectly good teeth pulled because they thought THAT was the problem or un-necessary sinus surgery.   :-/

Again I am not doubting want everyone is saying I should probably make clear that it was not just the one doctor who diagnosed me it was 4 doctors over a 3 day period along with my GP and neuro specialist. I have had great treatment from my doctors so far however, each of them has had to go away and do research themselves in order to make the diagnosis.
The one major problem I have with the doctors is their reluctency to prescribe high dosages of anything like the verapamil, I am on 120 mg a day. They also struggled with ideas on pain relief. My doctors willingness to go and do further research to be sure makes me feel safe in the diagnosis and also the information I have come across on this website and others.

I guess I should have gone into more detail about my actual diagnosis in my first post.

I wrote my first post with the hope of someone just saying its ok you are not alone, I did not expect to be told that someone, after reading a 400 word post, doubts my diagnosis. I continue to be hopeful in finding the best care I can and I DO appreciate people taking the time to comment on what I have said, I am finding this all a huge change to my life I have finally found out what is wrong and now I can find the right people to help.

I should also mention that although it was only 3 days I had many tests done and yes they had an 'idea'  and rolled with it and in so many ways some part of me hopes its not CH and its something I don't have to live with permanently

Mike NZ wrote on Apr 13^th, 2012 at 4:26pm:

Hi Aimee This is actually a pretty complex area of medicine, so in order to get a correct diagnosis, especially when there are multiple other potential causes of near identical symptoms is not simple, but it relies on a significant body of knowledge and experience, beyond that of most GPs and many neurologists. Hi Aimee....give us a chance...this is family...and one of the precepts is: "take what you need and leave the rest" There are several posts about what can cause cluster like symptoms that is well, well worth a read - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Given that many of these other non-CH issues can need urgent specialized treatment, which is different to CH treatment, this is precisely why people are urged to seek a diagnosis or a confirmation from a headache specialist. A year or so ago there was a post here where someone who had CH was talking with someone (think a work colleague) who had what to them seemed to be text book CH, but still urged them to see a specialist. It turned out that they had a brain tumour, not CH, that could have been otherwise fatal. That may have been me. I take this shit REAL serious. Since Jon is known to have "monster" headaches...he is considered an expert (YIKES!). I was presented with a colleague with "classic" ch symptoms. Mama didn't raise no fools...I advised..."well, it sounds like ch...but you REALLY need to get some expert opinion on the possibilities". He did...it WAS a brain tumor...and if he had been treated for just ch...he'd be DEAD. Happy to report the tumor was removed and he is doing fine! There have been other cases where people have been incorrectly diagnosed by GPs and then given drugs at the high doses that people with CH need, which are significantly higher than normal use (e.g. verapamil) which can cause further issues. This is why people want to make sure that people have got the right diagnosis, which is something that we can not do ourselves. Once there is a diagnosis, people are more than happy to help and give advice, as you'll see from reading multiple posts here. I hope you do stay around as there is so much to learn from here. I know it has made a very significant impact on my life, from being in a downward spiral due to CH, to a total turn around, just from getting great advice plus understanding from people who understand what it's like to get CHs. We are careful...to be otherwise is to be STUPID, irresponsible, and practicing medicine without a license. We DO care...stick around.... Best, Jon

Quote:

the best way to help a newcomer is to act like they don't know what they are talking about I HAVE done my research.

Most dont, (I didn't) and admit it and are open to the experienced suggestions offered here. Those are the ones that benefit the most from CH.com

Then there are those who already have all the answers because they have "done their research". Those folks probably don't benefit much from CH.com and go on with unmitigated suffering.

Pick one.

jon019 wrote on Apr 13^th, 2012 at 9:32pm:

That may have been me. I take this shit REAL serious. Since Jon is known to have "monster" headaches...he is considered an expert (YIKES!). I was presented with a colleague with "classic" ch symptoms. Mama didn't raise no fools...I advised..."well, it sounds like ch...but you REALLY need to get some expert opinion on the possibilities". He did...it WAS a brain tumor...and if he had been treated for just ch...he'd be DEAD. Happy to report the tumor was removed and he is doing fine!

Yes, it was you Jon, I found the post with the help of Google, which I remember being a huge lesson that so many of us took on board. We are not medical doctors, we're just people with a lot of experience of CH.

The post can be found at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

It is well worth reading for anyone reading this post.

It was the most gracious lady ever graced this place who said, "We're not doctors, but by God we're expert patients."

AussieBrian wrote on Apr 14^th, 2012 at 7:20am:

It was the most gracious lady ever graced this place who said, "We're not doctors, but by God we're expert patients."

...one of my favorite quotes of all time...

along with a certain Aussie's ::): "30 years of ch and still no bloody good at it"...at once funny, ironic, true, false, alliterative, succinct, and GRACEFUL....

AussieBrian wrote on Apr 14^th, 2012 at 7:20am:

It was the most gracious lady ever graced this place who said, "We're not doctors, but by God we're expert patients."

The kind of patients that some doctors love to have and others hate, which tends to say a lot about the kind of person the doctor is.