Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2002 Posts >> Cluster Mimicking
        
(Message started by: Margi on Oct 23^rd, 2002, 1:54pm)

Title: Cluster Mimicking
Post by Margi on Oct 23^rd, 2002, 1:54pm

No, this isn't another flame post.

This is just proof that there ARE other conditions out there that mimic cluster headaches and some of them are dang dangerous!! A newbie mailed this to me, in hopes that I would post it to warn people of the danger of this particular affliction, called Carotid Artery Dissection.

Here's what she said about it:

"There is a condition called carotid artery dissection that produces horner's syndrome, unilateral headache and pulsatile tinnitus (hearing your own pulse rate all the time). The article says this condition can look like cluster headache. This condition can cause stroke, (and my doctor obviously didn't know about it) so I think that it's important that this information gets out in case other people are misdiagnosed.

Here is the link (look under vascular dissection)

http://www.neurologyreviews.com/nov00/nr_nov00_headache.html

and folks wonder why we 'know-it-alls' are cautious in making sure that people who are being diagnosed and treated for cluster really HAVE cluster? ::)

Title: Re: Cluster Mimicking
Post by hub on Oct 23^rd, 2002, 2:21pm

That's not it at all Margi. We do it because we are unique and so special and it's our disease. It's kind of like a junkie going into an AA meeting. Or a Jew going into a catholic church... Or Bob P going to the health club...

Title: Re: Cluster Mimicking
Post by Bob P on Oct 23^rd, 2002, 2:51pm

They forgot one. In hub's case it's just gas.

Title: Re: Cluster Mimicking
Post by Margi on Oct 23^rd, 2002, 2:52pm

well, hub - you do have a couple of points (but we won't talk about your ears ;)).

what scares me is if the folks that are suffering from this Carotid Artery thing are being treated as clusterheads and given imitrex, it's only going to accellerate the possibility of stroke.

this gal really did her homework and her OWN research. her doctor was WRONG.

Title: Re: Cluster Mimicking
Post by Ueli on Oct 23^rd, 2002, 2:59pm

Another disease that can have symptoms similar to CH is temporal arteritis (described on the same page Margi gave).
The 'know-it-alls' would recommend a neuro and a MRI scan. The 'welcome-all-to-this-site' would cuddle the guy with TA, until he turned blind.

Title: Re: Cluster Mimicking
Post by Bob P on Oct 23^rd, 2002, 3:00pm

I've got an article at home about Spontaneous Carotid artery Disection mimicking meegraine, or something to that extent. I'll send it to ya or post it or put it in the OUCH library or use it for TP or something.

Title: Re: Cluster Mimicking
Post by jonny on Oct 23^rd, 2002, 3:03pm

I could go for being cuddled with T&A ;D

But im not that lucky, oh well, back to the vasaline ;D

.......................jonny

Title: Re: Cluster Mimicking
Post by Slammy on Oct 23^rd, 2002, 3:14pm

That 'll turn ya blind too, Jonny ;D

Slammy 8)

Title: Re: Cluster Mimicking
Post by Bob P on Oct 23^rd, 2002, 3:39pm

I'm tellin' ya, it's the women that do all this touchy feely crappola. Well, hub does a little too.

And women don't even get clsuters. What the heck are they hangin' around for??

If anyone tries to touchy feely me while I'm clusterin', I'm gonna smack 'em around like I used to my mom (and still do my wife).

Title: Re: Cluster Mimicking
Post by Jim R on Oct 23^rd, 2002, 3:46pm

Not only blind Slammy...hairy palms! LOL! ;)

Title: Re: Cluster Mimicking
Post by Charlie on Oct 23^rd, 2002, 3:55pm

No. It causes CH. :o

What a bunch of jerk-offs. :D

Charlie---Celibate and sober for 11 years. :-[

Title: Re: Cluster Mimicking
Post by Jim R on Oct 23^rd, 2002, 3:59pm

Charlie - I thought it RELIEVED them?! LOL! Oh yeah - only women can manage that!! ;)

Jim R

Title: Re: Cluster Mimicking
Post by DougL on Oct 23^rd, 2002, 4:40pm

Jonny,
No one uses vasaline any more.
Don’t you know you’re supposed to use
Water based, sperm aside lubricant.

I also heard if you rubbed that stuff on your head
It would make you feel “OH” so much better. :-*

DouglasL

Title: Re: Cluster Mimicking
Post by Drk^Angel on Oct 23^rd, 2002, 5:01pm

Margi,

I have no problem recommending anyone, who has not had the proper tests to rule out other underlying problems, to visit a neuro, and have an MRI and/or any other test that will rule out other causes for the pain. I have no problem recommending someone who may not be sure about their diagnosis to get a second opinion. I also have no problems with recommending anyone who has not yet seen a proper neuro to do so as soon as possible. I have never said that I have a problem with that, and have done so myself. I do have a problem with ppl telling others that there is no way they can have clusters, and they don't belong here. I also have a problem with ppl ridiculing sufferers that may not have the exact same symptoms, level of pain, or reaction to the pain as they do.

Can we now let it drop please?

Drk^Angel

Title: Re: Cluster Mimicking
Post by 2late on Oct 23^rd, 2002, 5:05pm

I dunno Doug L., vasalene is still the lube of choice, sometimes KY, your right, rubbin it on my "head" does make me feel better ;D ..........2late

Title: Re: Cluster Mimicking
Post by jonny on Oct 23^rd, 2002, 5:05pm

I dont see where Margi mentioned your name, DRK.

Why dont YOU drop it?

........................jonny

Title: Re: Cluster Mimicking
Post by Drk^Angel on Oct 23^rd, 2002, 5:10pm

Nevermind... If you can't see it, I'm not going to point it out for you, because you're obviously blind already.

Drk^Angel

Title: Re: Cluster Mimicking
Post by DougL on Oct 23^rd, 2002, 5:11pm

Drk

Margi never memtioned your name in her post.
Why cant you drop it?

DougL

Title: Re: Cluster Mimicking
Post by Margi on Oct 23^rd, 2002, 5:48pm

No, I'll never 'drop' a subject that could cause people to have strokes. This newbie sufferer sent this to me and asked me to post it to warn other people about the dangers of people being misdiagnosed by their doctors.
THAT's why it's so important to have a clear-cut definition of what clusters really are. Cluster meds given to a non-clusterhead can kill. That's it, that's all.

Oh great, now Doug and Jonny are fighting over the KY. ::)

Title: Re: Cluster Mimicking
Post by Charlie on Oct 23^rd, 2002, 5:58pm

For those who don't know how to follow a thread:

Pull up a chair.

Stand on the chair.

Throw a rope over a beam and around your neck.

Quickly get off the chair.

Charlie

Title: Re: Cluster Mimicking
Post by Ted on Oct 23^rd, 2002, 5:58pm

Man, Drk. This post was about a potentially life-threatening condition that mimics clusters and about the one woman who seemingly found out the hard way. It was posted as a means to educate people about it so they can make sure they don't die from a misdiagnosis. It was NOT about you. Not everything in the world is about you.

GET OVER YOURSELF!

And thanks Margi and whoever sent you the mail.

Title: Re: Cluster Mimicking
Post by Slammy on Oct 23^rd, 2002, 6:04pm

Wow!

Quote:

Can we now let it drop please?

This isn't about you! It has nothing to do with you! Jeezus! ya think the world revolves around you? Ya think we sit around all day and say " Hmmmm, what else can I post to get under Drk's skin" ?

Quote:

No, I'll never 'drop' a subject that could cause people to have strokes

Thatababy Margi! I told ya what that does to me when you "get going!" :D

Slammy 8)

Title: Re: Cluster Mimicking
Post by SFChris on Oct 23^rd, 2002, 6:28pm

All,

Let's take this discussion back to Margi's original post because it is an important thread. I do believe alot of people are mis-diagnosed with clusters, and clearly there are alot of other conditions that could be more dangerous if not properly diagnosed! It is important that people get a second, or even third opinion from a qualified doctor.
When I first came to this board I had been "diagnosed" with CH by a doctor at the emergency room. I was told to take massive amounts of ibuprofin, and a beta-blocker as a preventative. I was also told to avoid red-wine, aged cheese and all the other "migraine causing" foods. I took this as gospel because he was a doctor, and even posted about how these foods were triggers for me (because he told me they were)... I eventually went to a neurologist who confirmed the cluster diagnosis (by an MRI and nitroglycerian test), and put me on Verapimil and Imitrix, and took me off the ibuprofin, and let me eat the "migraine foods". I eventually made it to Dr. Goldstein who also confirmed the CH diagnosis (additional MRI) and got me through the cycle.
My point is the original doctor got lucky with the diagnosis because he clearly didn't know how to treat me, indicating that he knew shit about clusters. I'm now sure most doctors really don't no shit about them...
So - as much as I don't like the "flaming" that can happen here, I do understand why folks push for a correct diagnosis. If doctors can't get it right, we sure as shit should!!

Chris

Title: Re: Cluster Mimicking
Post by Jim R on Oct 23^rd, 2002, 6:44pm

Good post SF Chris! Despite the jokes, this is a very important subject, as Margi originally indicated. This is - or should be - nothin about anything but it's original purpose - mistaken diagnoses can be very dangerous (let alone frustrating)... JIm R

Title: Re: Cluster Mimicking
Post by SFChris on Oct 23^rd, 2002, 6:49pm

Thanks Jim - with all of the recent "fun" on the board, I don't want the actual intention of Margi's post to get lost. It is critical that the peeps here are properly diagnosed because there are worse things than CH. And the wrong meds can really fuck you up. >:(

Title: Re: Cluster Mimicking
Post by Marc on Oct 24^th, 2002, 12:26am

Margi,

Good point!

The first Neuro I saw insisted on an MRI and an MRA for exactly that reason.

The MRA is one way to focus on Arterial conditions and she specifically wanted to rule out Cartoid Artery problems.

Marc

Title: Re: Cluster Mimicking
Post by Linda T on Oct 24^th, 2002, 9:34am

I think that this is a really important point too. I agree with SFChris. There are things out there that are going to mimick CH and some of these things are life threatening. People out there should be aware of this.

During the peak of my cycle during the first part of this year, my mom started complaining of ha that sounded a whole lot like ch. I thought - what are the odds? A 78 year old lady with no ch history? An actual family connection here? Can't be. Well the docs thought she had temporal artiritis. She went through the whole gamut of tests which all proved negative. She was on pred for about 2-3 months. Same as some with ch, when they tried to taper the ha was back.

Later this year, we found out that mom has thyroid cancer. Doing some research on this I found that this type of cancer is sometimes responsible for "migraine" headache. Luckily, mom has been treated and is doing well - but I think that this was some kind of signal that something else was going wrong.

I hope that people out there are not jumping to the conclusion that what they have is ch without going through the proper tests and whatever. I hope that everyone out there is getting whatever help they need. That's why I think Margi's post is on the money. Thanks Margi!

Wishing you all PFDAN always, Linda T

Title: Re: Cluster Mimicking
Post by Bob P on Oct 24^th, 2002, 1:38pm

From Dr. Klaper's study which was conducted on this web site:

"We analyzed a total of 789 respondents, 76% men and 28% women. RESULTS:
Eighty-seven percent of respondents qualified as having cluster headache according to International Headache Society criteria."

So, 1 out of 7 people who responded from this site, didn't have the correct symptoms for their headaches to be diagnosed as clusters.

Why do we question, DUH!

Title: Re: Cluster Mimicking
Post by StanTheMan on Oct 24^th, 2002, 1:41pm

Dittos, Marc (and Margi) !

I've dealt with CH's for the past 10 years (cycles hitting about every 18 - 24 months) and I never saw a neuro until this year.
At first, when my current physician wanted to refer me to the neuro, my eyes rolled a bit and I thought "yeah, what's he gonna tell me that I don't already know?".
But after I saw him and discussed the reasoning for a visit and an MRI / MRA, I really saw the wisdom behind it.
Sure, in my case there was nothing new to report, but I'm glad some of the really nasty, scary stuff has been ruled out.
So I definately echo a lot of what's been said -- if you're new to being a clusterhead or think you have clusters, see a good neurologist and get a proper diagosis. :)

PFDAN

Stan "Waiting for Hoops season to start!" TheMan
RockChalk J-Hawk!

Title: Re: Cluster Mimicking
Post by jonny on Oct 24^th, 2002, 2:28pm

Well, slap my ass, cut my hair and scrape my skin off to get at my ink!!!!.......those figures cant be right Bob, didnt ya know that someone looking for Ebay that lands here has Clusters? ;D

They just cant be right, im calling Hub....he will know!

...................jonny

Title: Re: Cluster Mimicking
Post by Bob P on Oct 24^th, 2002, 4:04pm

What they didn't say was that all 13% who didn't qualify, were women, well except for one guy with wings.

On a serious note, I just noticed that NORD, The National Organization of Rare Disorders, has listed OUCH as a resource for clusters. We're there some with some pretty big players.

http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Headache%2C%20Cluster

Title: Re: Cluster Mimicking
Post by Jim R on Oct 24^th, 2002, 4:10pm

That is pretty great, Bob. NORD is one of the more recognized clinical resources. Pretty impressive.... Jim R

Title: Re: Cluster Mimicking
Post by jonny on Oct 24^th, 2002, 5:02pm

Geez Bob,

Are you telling me the know-it-alls started something three yrs ago that is recognized buy big name Docs in the field of clusters and is getting much attention in the HA world?.......Much more attention than any other CH group!!!

Nah, couldnt be.....the know-it-alls are just intrested in judging people and not CH ;D

........................jonny..........Bite me!!!!