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        New Message Board Archives >> 2006 General Board Posts >> That EFFIN IDIOT!!!
        
(Message started by: ClusterChuck on Apr 12th, 2006, 1:10am)
Title: That EFFIN IDIOT!!!
Post by ClusterChuck on Apr 12th, 2006, 1:10am
Guess what!!!!  I do NOT have cluster headaches!!!   Isn’t that GREAT news???

Now, the story BEHIND the story:
My neuro (who is GREAT) thought that I might get some answers, and possibly successful treatment (I’m beginning to seriously doubt that will ever happen, for me) if I were to go to a neuro, who is more specialized in headaches, than she is.  Ok, I’m game.  Add another name to my huge list.  

So, I travel 2 ½ hours, one way, to see this, so called headache genius.  I go out there for the initial visit, then two more times for tests, and then, today, for his evaluation.  (twenty hours of driving, not counting time spent on the side of the road, dealing with the beast, and hours spent in waiting chairs)  Even though I had told myself, not to get too ramped up and excited, I did.  Finally a break through?  YEEHAW!!!

His brilliant conclusions:  I do not have cluster headaches.  ..  ..  ..  ..  ..  ..  Ok .. .. .. .. .. .. What DO I have?  He has no idea.  BUT, he is convinced that I do not suffer from cluster headaches.  His reasons?  They are as follows:
A person with cluster headaches:
- Has a maximum of 6 hits a day (6, is a light day for me – I get up to 16 a day)
- Only has them on one side of their head, during a cycle (I get them on both sides)
- When they reach 50 years of age, they start to decline, and go away (I have gotten MUCH worse, in the last 6 years {I am 56 years old})
- Responds to at LEAST one of the medications or cocktails that I have tried
- Cannot drink ANY type of alcohol, at all, without it being a trigger (I can drink anything, except beer, wine, or rum)
- Never has an orgasm as a trigger (no comment …)
- Does NOT scream, pull hair, and get abusive, during a bad hit (again, no comment …)

He mentioned a few other, proven traits, that I go against, as for the reason for his wonderful diagnosis.  But, I was so pissed, by this time, that I had started to tune him out, so that I didn’t get “abusive” and beat his fucking brains out!  He witnessed several hits, including a doozie of  a KIP9 (where I screamed, pulled hair, and got abusive to their damn interference).  So, for 14 years as an episodic, and now 8 years as a chronic, I have been treated for something I DON’T have.  And I didn’t even count the first 6 years, when no one knew what I had, and during which time, I was committed to a psychiatric facility, and then treated as an out patient, to cure me for “pretending” to have pain.  So for a total of 28 years that I have had this mysterious ailment, I have been diagnosed and treated wrong, all along.  

I know that many of you have witnessed me having one of these “episodes”.  I am here to inform you, they were not cluster headache attacks.

Aren’t I LUCKY???  I DON’T have this terrible affliction!  LUCKY ME!!!



What a FUCKING IDIOT !!!!!!!!!  And this guys is considered to be, and calls himself, a headache EXPERT????  I have been sitting here fuming (and dealing with these mysterious “episodes”) all afternoon and evening, since leaving his office.

I am sorry for the long rant.  I just can’t believe that a so called expert can be so fucking stupid and wrong!

Chuck – no longer a clusterhead
Title: Re: That EFFIN IDIOT!!!
Post by AussieBrian on Apr 12th, 2006, 1:16am
Hey, Chuck, that's fabulous news!!!!  Can I have address so I can cured just like you did??
Title: Re: That EFFIN IDIOT!!!
Post by Pinkfloyd on Apr 12th, 2006, 1:23am

on 04/12/06 at 01:10:27, ClusterChuck wrote:
Chuck – no longer a clusterhead


Not the first time I've seen clusters "cured" through re-diagnosis.

I hope you write DJ for special dispensation so you can continue to post here though.

I suppose you could start a new message board for whatever it IS that ails you, but if there's only you, you'll have to spilt your personality to have someone to talk to.  :(

Here's my take on the diagnosis. He had nothing to offer to treat your clusters, so he gave you something without a name so he can't be held responsible for helping you.

Sorry Chuck, I also had most of those things he said cluster people don't have. If you start a new board, let me know  ;)

Bobw
Title: Re: That EFFIN IDIOT!!!
Post by Jasmyn on Apr 12th, 2006, 2:20am
Well, it is good news to know that there is eventually a miracle cure for CH. :o

"You just go and see an uninformed professional idiot and Wha-la... you are cured!" ::)
Title: Re: That EFFIN IDIOT!!!
Post by tanner on Apr 12th, 2006, 3:27am
 Chuck, where can I find this guy. I'm 53 get way too many hits, I can drink, and the their getting worse! What the F##k am I doing up at 4:00 am waiting for the next one?

 sorry about the disappointment..................tim
Title: Re: That EFFIN IDIOT!!!
Post by zwibbs/Scott on Apr 12th, 2006, 5:14am
Cluster Chuck----------This Sounds like a Cluster f**k. If you ever plan to be in New York I have a great Neurologist who deals with several Cluster sufferers. He also runs a pain clinic and whenever I am in his office the other patients swear by this guy. He also treated me for Sciatica which I only had once and I got it from sneezing........That's right...........sneezing. I had quite the year last year ( 2005)- Sciatica then in October the beast paid me another visit.
Title: Re: That EFFIN IDIOT!!!
Post by chewy on Apr 12th, 2006, 5:31am
So what does he want you to do now? Let me guess.

Tommorow you start accupuncture and the chiro is next week ?
Title: Re: That EFFIN IDIOT!!!
Post by Svenn on Apr 12th, 2006, 5:41am
Why am i not suprised Chuck.

Think its best for me to keep my comments for myself here.
Specially about some of the things you told us  ;;D



Svenn
Title: Re: That EFFIN IDIOT!!!
Post by Kevin_M on Apr 12th, 2006, 5:45am

on 04/12/06 at 01:10:27, ClusterChuck wrote:
Guess what!!!!  I do NOT have cluster headaches!!!   Isn’t that GREAT news???



If this "I don't have clusters" is an excuse to not be at the convention Chuck, you better get more creative than that.    ;)



I guess some afflictions never learned to read medical books.
Title: Re: That EFFIN IDIOT!!!
Post by catlind on Apr 12th, 2006, 7:37am
What a shame that some doctors, neurologists eve, don't know enough about clusters to know that chronics can drink.  I've got a neuro like that too, I believe she said something about clusters only afflicting males over the age of 40.  Between her and your neuro, man, no one should ever suffer more than 10 years and of course none of females actually have clusters either.

Sorry you got your hopes up and had them dashed.  I've got a 2x4 that can cure you  ;;D

Cat
Title: Re: That EFFIN IDIOT!!!
Post by TomM on Apr 12th, 2006, 7:42am
That is GREAT news! ... now leave this site to us who DO have CH. <tongue in cheek>
Like the rest of us, Dr.s have opinions. Put his in the "A$$hole" column.
Chuck--you know what you've got and I feel your pain. You're mostly pissed b/c of the effort of all the tests, driving, and $$ for a misdiagnosis. I feel your pain.
Vent away.
TomM
Title: Re: That EFFIN IDIOT!!!
Post by BMoneeTheMoneeMan on Apr 12th, 2006, 7:58am
Boy, I am so glad there are new rules for CH.
No more than 6 a day.
Just moderate pain, nothing severe.
And thank God that no women suffer from CH.


Doesnt scream, pull hair or get abusive?  lol
I wonder what it was that made me bang my head on my brother in law's dashboard this weekend.
hmmmmm

BMonee
Title: Re: That EFFIN IDIOT!!!
Post by aprilbee on Apr 12th, 2006, 8:08am
Geez........ ::)  I switched neuros last year because I told him about this support group and he asked me if it was just a bunch of old men talking about their headaches....'nough for me...now seeing Dr. Tribbe in OKC...very good neuro and I think treats a lot of people on this board that are in OK....

Good luck, can't believe what is happening to you... >:(
Title: Re: That EFFIN IDIOT!!!
Post by Paul98 on Apr 12th, 2006, 8:09am
Hey Chuck-  Feel bad for you with all the wasted time and frustration.  To many of the Dr.'s see things in B&W and if it isn't "text book" symptoms it can't be this or that.  They may be good at memorizing things but they can't think outside the book learning.  

Hang in there!

-P.
Title: Re: That EFFIN IDIOT!!!
Post by thomas on Apr 12th, 2006, 8:14am

on 04/12/06 at 01:10:27, ClusterChuck wrote:
Guess what!!!!  I do NOT have cluster headaches!!!   Isn’t that GREAT news???

Now, the story BEHIND the story:
My neuro (who is GREAT) thought that I might get some answers, and possibly successful treatment (I’m beginning to seriously doubt that will ever happen, for me) if I were to go to a neuro, who is more specialized in headaches, than she is.  Ok, I’m game.  Add another name to my huge list.  

So, I travel 2 ½ hours, one way, to see this, so called headache genius.  I go out there for the initial visit, then two more times for tests, and then, today, for his evaluation.  (twenty hours of driving, not counting time spent on the side of the road, dealing with the beast, and hours spent in waiting chairs)  Even though I had told myself, not to get too ramped up and excited, I did.  Finally a break through?  YEEHAW!!!

His brilliant conclusions:  I do not have cluster headaches.  ..  ..  ..  ..  ..  ..  Ok .. .. .. .. .. .. What DO I have?  He has no idea.  BUT, he is convinced that I do not suffer from cluster headaches.  His reasons?  They are as follows:
A person with cluster headaches:
- Has a maximum of 6 hits a day (6, is a light day for me – I get up to 16 a day)
- Only has them on one side of their head, during a cycle (I get them on both sides)
- When they reach 50 years of age, they start to decline, and go away (I have gotten MUCH worse, in the last 6 years {I am 56 years old})
- Responds to at LEAST one of the medications or cocktails that I have tried
- Cannot drink ANY type of alcohol, at all, without it being a trigger (I can drink anything, except beer, wine, or rum)
- Never has an orgasm as a trigger (no comment …)
- Does NOT scream, pull hair, and get abusive, during a bad hit (again, no comment …)

He mentioned a few other, proven traits, that I go against, as for the reason for his wonderful diagnosis.  But, I was so pissed, by this time, that I had started to tune him out, so that I didn’t get “abusive” and beat his fucking brains out!  He witnessed several hits, including a doozie of  a KIP9 (where I screamed, pulled hair, and got abusive to their damn interference).  So, for 14 years as an episodic, and now 8 years as a chronic, I have been treated for something I DON’T have.  And I didn’t even count the first 6 years, when no one knew what I had, and during which time, I was committed to a psychiatric facility, and then treated as an out patient, to cure me for “pretending” to have pain.  So for a total of 28 years that I have had this mysterious ailment, I have been diagnosed and treated wrong, all along.  

I know that many of you have witnessed me having one of these “episodes”.  I am here to inform you, they were not cluster headache attacks.

Aren’t I LUCKY???  I DON’T have this terrible affliction!  LUCKY ME!!!



What a FUCKING IDIOT !!!!!!!!!  And this guys is considered to be, and calls himself, a headache EXPERT????  I have been sitting here fuming (and dealing with these mysterious “episodes”) all afternoon and evening, since leaving his office.

I am sorry for the long rant.  I just can’t believe that a so called expert can be so fucking stupid and wrong!

Chuck – no longer a clusterhead



Chuckie dear.  I am elated to hear that you don't suffer from this nightmare.

Yeah right!  I have seen you get hit, and there is no doubt that it is CH.  I am very sorry that you had to go through all of that bull shit.

But this reminds me of behaviour I see HERE almost daily.  Some one comes here and talks about their pain and symptoms, and the Gestapo run them off, because their symptoms aren't identical to thiers.  

So before people start bashing this obvious quack, perhaps they should look in the mirror.

If any of you are offended by what I said, you can bring it up with me any time you'd like.  But you know I speak the truth.

Love you CHuck. :-*
Title: Re: That EFFIN IDIOT!!!
Post by Gena on Apr 12th, 2006, 8:20am

on 04/12/06 at 08:14:45, thomas wrote:
Chuckie dear.  I am elated to hear that you don't suffer from this nightmare.

Yeah right!  I have seen you get hit, and there is no doubt that it is CH.  I am very sorry that you had to go through all of that bull shit.

But this reminds me of behaviour I see HERE almost daily.  Some one comes here and talks about their pain and symptoms, and the Gestapo run them off, because their symptoms aren't identical to thiers.  

So before people start bashing this obvious quack, perhaps they should look in the mirror.

If any of you are offended by what I said, you can bring it up with me any time you'd like.  But you know I speak the truth.

Love you CHuck. :-*


[smiley=thumb.gif]
Title: Re: That EFFIN IDIOT!!!
Post by FramCire on Apr 12th, 2006, 8:30am

on 04/12/06 at 01:10:27, ClusterChuck wrote:
Guess what!!!!  I do NOT have cluster headaches!!!   Isn’t that GREAT news???

They are as follows:
A person with cluster headaches:
- Has a maximum of 6 hits a day (6, is a light day for me – I get up to 16 a day)
- Only has them on one side of their head, during a cycle (I get them on both sides)
- When they reach 50 years of age, they start to decline, and go away (I have gotten MUCH worse, in the last 6 years {I am 56 years old})
- Responds to at LEAST one of the medications or cocktails that I have tried
- Cannot drink ANY type of alcohol, at all, without it being a trigger (I can drink anything, except beer, wine, or rum)
- Never has an orgasm as a trigger (no comment …)
- Does NOT scream, pull hair, and get abusive, during a bad hit (again, no comment …)


Here's some good news for everyone.

7% of us don't have CH (7+ hits a day)

19% also dont (on both sides, not just 1)

2% Started at age 50, so they had to get worse from nothing

22% say that no abortives work/46% say no preventatives work

74% drink alcohol (it can't be a trigger for all of them)

So, by my estimation (re: guess) at least %50 don't have CH according to 1 of the reasons your doc gave.

If to get disgnosed with CH we had to all conform to the same symptoms, duration, treatment, and frequency... would any of us have CH?  

My advice, go back to the old Dr. and laugh this guy off.  Yes you spent too much time and effort to see this clown, but don't waste any more of your time being angry at him.
Title: Re: That EFFIN IDIOT!!!
Post by Jimi on Apr 12th, 2006, 9:33am
Well I have seen you get hit and you DO have cluster headaches. What was his answer to why 02 will abort them after 15 minutes?

Oh BTW, you owe me $200 for the diagnosis.
Title: Re: That EFFIN IDIOT!!!
Post by Goblin on Apr 12th, 2006, 11:22am
He isn't a Headache specialist he is a pain in the arse specialist. >:( >:(
I saw the video clip of your attack and If your hit there was anything like that and he still said you don't have CH then he might as well be a freaking horse doctor!
Title: Re: That EFFIN IDIOT!!!
Post by Sandy_C on Apr 12th, 2006, 2:05pm
Chuck

I'm so glad you don't have CH.  What a freaking miracle!

Seriously though, I'm sorry you had to waste so much time and money on a "headache specialis" that doesn't know his CHead from his A$$hole.  Since his diagnosis was not on the money, why not refuse to send him any money for his diagnosis???  

Hang in there buddy.  We're still here for you CH or no CH.

[smiley=hug.gif] [smiley=hug.gif]

Sandy
Title: Re: That EFFIN IDIOT!!!
Post by Donna_D. on Apr 12th, 2006, 2:08pm
I posted this in another thread, I just want to make sure Chuckie sees it...LOL!!


http://www.digitalfilms.com/play.php?id=737960




:P

DD
Title: Re: That EFFIN IDIOT!!!
Post by Dragnlance on Apr 12th, 2006, 2:36pm
I had something simular.

Doc told me I couldnt have CH because
1) I dont smoke
2) I dont drink
3) not overweight
4) I am active outdoors
5) do not have an "addictive personality"

WTF????   If the problem lies with a malfunction in the hypothalamus, what do personal habits have to do with anything???

I understand how you feel CHuck

Dragn
Title: Re: That EFFIN IDIOT!!!
Post by Charlie on Apr 12th, 2006, 6:31pm
Wonderful news Chuck.....  

Perhaps you can post the address so we can find him and pound him to dust.

http://www.netsync.net/users/charlies/gifs/INQUISITION SMILEY.gif

So sorry Chuck...

Charlie
Title: Re: That EFFIN IDIOT!!!
Post by Sean_C on Apr 12th, 2006, 9:23pm
Email him your link of the hit, then ask him what he thinks.

Nothing worse than a doc that says "next" as your walking out the door :-/

Keep your hopes up Chuck, it still could be worse.

Sean....................................
Title: Re: That EFFIN IDIOT!!!
Post by Jonny on Apr 12th, 2006, 9:36pm
Shut up........get even, kill him ;;D
Title: Re: That EFFIN IDIOT!!!
Post by ClusterChuck on Apr 14th, 2006, 2:26am
Guess what??

The bone head's office has now called me THREE times, to set up an appointment for further testing!

Does he REALLY think I am EVER going to put more money in his pockets?

FUCKING IDIOT!!!!!!!

the former clusterhead
Chuck
Title: Re: That EFFIN IDIOT!!!
Post by Lizzie2 on Apr 14th, 2006, 12:09pm
What are his professional affiliations?  Is he a member of the American Headache Society?  Seriously...if he calls himself a headache specialist, then he ought to have some professional affiliations to back that up.  I'd be curious to know his name, but I know you may not want to give it.  I promise not to contact him or show up on his door step to beat him up or anything like that!  PM me if you'd rather. :)

Hugz to a GREAT clusterpal,
Lizzie :)
Title: Re: That EFFIN IDIOT!!!
Post by FramCire on Apr 19th, 2006, 1:12pm
All you CH-wannabbes make me sick.  

Seriosuly though, we should post a list of doctors we have had good experiences with and docs we have had bad experiences with.  Not to blacklist the bad, but to make sure we are prepared for them.
Title: Re: That EFFIN IDIOT!!!
Post by BarbaraD on Apr 19th, 2006, 2:34pm
I went thru this years and years ago and finally after I got just really fed up with all those "headache" specialists doing nothing, but being proud of themselves, I finally went back to my family doc and told him we weren't going to go to any more "specialists". He and I were going to treat me and that's what we did for a couple of years - I researched and he wrote the scripts. Then I got really bad and he "snuck" a neuro in on me while I was in the hospital. Turned out this guy had migraines and kept up on all kinds of headaches and knew what Clusters actually were. I got hit while we were talking and he didn't argue with me when I told him what to give me. We've been together ever since - My GP, this neuro and I. That's about 10 years now and it was shear luck.... I've sent everyone in East Texas to both of them. so if anyone is close to East Texas give me a call -- they're worth visiting.

I guess that's how we find the "right" doc -- word of mouth. BUT, sometimes our personalities play a big part in chosing the right doc also.

Anyhow Chuck - I'm so glad you don't have CH. That little scene I witnessed in Nashville was "just a play for attention?"  ;;D  Sorry, I still laugh when I think of those people at the next table looking so horrified that the rest of us just went on eating while Luke took care of you. They finally asked if we weren't worried. I think that's when Sven and Charlie explained CH to them.

Hugs BD
Title: Re: That EFFIN IDIOT!!!
Post by Bob P on Apr 19th, 2006, 2:50pm

Quote:
A person with cluster headaches:
- Has a maximum of 6 hits a day (6, is a light day for me – I get up to 16 a day)
- Only has them on one side of their head, during a cycle (I get them on both sides)
- When they reach 50 years of age, they start to decline, and go away (I have gotten MUCH worse, in the last 6 years {I am 56 years old})
- Responds to at LEAST one of the medications or cocktails that I have tried
- Cannot drink ANY type of alcohol, at all, without it being a trigger (I can drink anything, except beer, wine, or rum)
- Never has an orgasm as a trigger (no comment …)
- Does NOT scream, pull hair, and get abusive, during a bad hit (again, no comment …)


Described me perfectly.  That dude knows what he's talkin' about (except he forgot WDGCH)!
Title: Re: That EFFIN IDIOT!!!
Post by wildhaus on Apr 19th, 2006, 3:13pm

Hey Chuck

And I was under the impression miracles never happened........
Oh well I was wrong…..
Can I have address I need a miracle too…… please

I will be in the USA any way for the convention….. so why not
Drop in…. get cured.... and forget the convention....and on to aussiland
I have to meat the guy with the beer tick……..

I have to tell your story to my Pain Doc. I will see him on Friday… he loves
This charlatans…Talk big know Sh-t

by the way I am with Jonny on this one......
what was it - Kill him? ;;D


Michael
Title: Re: That EFFIN IDIOT!!!
Post by SteveY on Apr 19th, 2006, 4:35pm
Chuck

I saw your attacks at the conference last year in Dallas.

You have CH.

Dump the bastard and move on.

Steve
Title: Re: That EFFIN IDIOT!!!
Post by Ghost on Apr 19th, 2006, 4:43pm
Going with Jonny too!

Have guns will hunt! >:( >:( >:(

Be good my friend!

Mike
Title: Re: That EFFIN IDIOT!!!
Post by Richr8 on Apr 19th, 2006, 7:12pm
So, it sounds like the old Neuro is light years ahead of this knucklehead.  I would be interested to hear her comments and wonder if she will be sending any other cluster heads his way?

I'd be furious as well.
Title: Re: That EFFIN IDIOT!!!
Post by Carl_D on Apr 20th, 2006, 6:10pm
It took having clusters to understand why my dad hated doctors so much and thought they were all quacks.

Not all of them, just 77%!

Peace,
Carl D

*Note - it should be added here that 54% of all survey estimates are made up on the spur of the moment.  ;;D
Title: Re: That EFFIN IDIOT!!!
Post by Jasmyn on Apr 21st, 2006, 5:16am
Incompetent Neuro's and docs should be listed.  That will give us a choice and head start plus save us all a lot of money.

Retraining of these professionals are a necessity!
Title: Re: That EFFIN IDIOT!!!
Post by Svenn on Apr 21st, 2006, 5:24am

on 04/21/06 at 05:16:29, Jasmyn wrote:
Incompetent Neuro's and docs should be listed.  .

Retraining of these so called professionals are a necessity!



Just helping you out here with a few words Jasmyn



Svenn


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