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Margi
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Push for a correct diagnosis!
« on: Mar 11th, 2005, 10:28am » |
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Just a reminder that just because a doctor may have diagnosed you to have cluster headaches, it is IMPERATIVE that you are confident with your diagnosis. If your symptoms don't fit those described on the cluster websites, please get a second opinion. You may have been prescribed meds that could, indeed, make your condition worse and could be potentially lethal.
We've had a man arrive our Canadian website who was recently diagnosed to be a clusterhead. After talking with him for awhile, he started telling us more about what he was going through. It turned out that he was passing out at the end of his attacks. He had one attack last week, and two the week prior. Also, constant ringing in his ears. His GP had given him imitrex, zomig, indomethacin and a blood pressure reducer (we're not sure if it was Verapamil or not). UNBELIEVABLE that his doctor would prescribe him two triptans as well as indo, but...obviously, this doctor was uneducated to clusters.
We quickly cautioned him about taking more than one triptan and he discontinued use of the indo. Fortunately, he didn't have another attack in the time we were talking to him so he didn't have to take anything.
He did see a neurologist yesterday and it turns out that the attack he had last week wasn't a cluster. It was a stroke. He took the Zomig when he would get one of these "clusters". I don't doubt that the Zomig escalated things and could very well have caused the stroke. I think it's the blood pressure reducer that probably saved his life and counteracted the effects of the triptans in his system.
He's now being sent for an MRI and CT scan and is off all meds except the b/p reducer. Had he continued taking the triptans because he was diagnosed by a doctor to be a clusterhead, it could have very well killed him. Fortunately, the stroke (or series of strokes) he had was very minor and he's ok.
And some people wonder why we pioneers question folks with symptoms that are outside the box? 
Here is his original thread:
http://www.clusterheadaches.ca/cgi-bin/yabb/YaBB.pl?board=General;action =display;num=1110158312;start=
And here is the thread where he tells us what his neuro said.
http://www.clusterheadaches.ca/cgi-bin/yabb/YaBB.pl?board=General;action =display;num=1110485362
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| « Last Edit: Mar 11th, 2005, 10:32am by Margi » |
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ArCane
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Re: Push for a correct diagnosis!
« Reply #1 on: Mar 11th, 2005, 10:58am » |
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WOW!! That's scarry.
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vig
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Re: Push for a correct diagnosis!
« Reply #2 on: Mar 11th, 2005, 11:01am » |
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Wow!
and a great save by you Margi...
thanks again for all your help in the cluster community...
who knows how this would've turned out without the help....
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thomas
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Re: Push for a correct diagnosis!
« Reply #3 on: Mar 11th, 2005, 11:10am » |
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on Mar 11th, 2005, 10:28am, Margi wrote:
And some people wonder why we pioneers question folks with symptoms that are outside the box?
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Hey, who loves ya babe?  I followed that thread as it unfolded, and Gord may possibly owe his life to Margi, a very beautiful thing.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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thomas
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Re: Push for a correct diagnosis!
« Reply #5 on: Mar 11th, 2005, 11:22am » |
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on Mar 11th, 2005, 11:20am, zrmulcahy wrote:
Personally, I'm thinking about getting an MRI if the alternative therapy fails, just to confirm. |
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That should have been one of the FIRST things you had done. It is very important to RULE OUT things that could be much more life-threatening than CH, get thyself to an MRI bay ASAP!
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Margi
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Re: Push for a correct diagnosis!
« Reply #6 on: Mar 11th, 2005, 12:04pm » |
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on Mar 11th, 2005, 11:22am, guesst wrote:
That should have been one of the FIRST things you had done. It is very important to RULE OUT things that could be much more life-threatening than CH, get thyself to an MRI bay ASAP! |
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Abso-friggin-LUTELY! This certainly isn't the first person we've heard of who has been misdiagnosed nor, sadly, will he be the last. Makes me SO angry that doctor's words are often treated as law with potentially lethal outcome. My own GP told me that they spend very little time in med school learning about headaches and, ironically, because of the recent publicity into clusters (because of the cluster websites), quite often otherwise unidentifiable headpain is thrown into the cluster box.
It's all DJ's fault. LOL 
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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kathy copelin, ch.com 8/8/06
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Bob P
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Re: Push for a correct diagnosis!
« Reply #7 on: Mar 11th, 2005, 1:01pm » |
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I take it you're especially speaking to the women?
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Margi
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Re: Push for a correct diagnosis!
« Reply #8 on: Mar 11th, 2005, 1:24pm » |
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oooh, you'll pay for that one, Bob.
livin' life on the edge today, are you?
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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rickyshot
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Re: Push for a correct diagnosis!
« Reply #9 on: Mar 11th, 2005, 1:30pm » |
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Yeah I was following his case closely and on the Canadian site too. Thanks Margi. My neuro always checks me with a CT scan when I end up in ER. You never know.... even after a million attacks when the cause is something else. I had one TIA BTW from complicated migraines. They don't play with me. Migraines, TIA and CH What a world........
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E-Double
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Re: Push for a correct diagnosis!
« Reply #10 on: Mar 11th, 2005, 1:36pm » |
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WOW!!!
Glad he survived and a great observation Margi!!!
You rule!
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LeLimey
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Re: Push for a correct diagnosis!
« Reply #11 on: Mar 11th, 2005, 5:01pm » |
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Couldn't agree more with E-Double. You should be feeling really proud of yourself Margi 
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Grandma_Sweet_Boy
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Re: Push for a correct diagnosis!
« Reply #12 on: Mar 11th, 2005, 5:01pm » |
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Our Margi rocks! She is well respected and well loved by all of us and does an amazing job of bopping back and forth between the two boards - helping and catching! Y'all treat her nice now, y'a hear?
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broomhilda
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Re: Push for a correct diagnosis!
« Reply #13 on: Mar 11th, 2005, 5:09pm » |
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Ditto to what Carol said 
Excellent post Margi and important for everyone.It was a rough few days sorting things out for Gord but am glad hes going to get the proper support and treatment now...
I for one know I would not be here if it was not for you 
And to DJ
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Suck it up Princess...
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Lizzie2
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Re: Push for a correct diagnosis!
« Reply #14 on: Mar 11th, 2005, 6:55pm » |
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Not to play devil's advocate because OBVIOUSLY that guy really is probably quite greatful to Margi and everyone else who kept pushing him to look into things farther!
However, I know in my case and some other people's cases...my symptoms didn't fit into the "Box" because I also have more than one type of headache condition. This delayed diagnosis, and I went months without treatment in a miserable state of hell.
It can definitely go both ways...and either way, it can be a major disaster, depending on what else is going on. By the time I was finally diagnosed with CH, my doctor had me on about 25 different meds for other headache conditions. Once I was diagnosed with CH, most of those meds went out the window and we focused on the ones that would actually HELP. Plus, no O2 until I was diagnosed.
Needless to say, getting that diagnosis saved my life, but on a totally different level. Although my clusters are chronic and still aren't under control, I'm much better off now than I was back when they were undiagnosed and I possibly slept an hour a night or so until I finally got treatment!
So I'm definitely not playing devil's advocate...but my neuro's office just put out a newsletter and if one were to read it, you'd definitely think that the old typical stereotype (males 20's-30's, square jaw, hazel eyes, heavy smoker...etc) were the only ones who could get clusters. I said that the ratio was dropping around 2-3:1 for men to women, and he said, "It is still predominantly male." That may be the case, but as long as it is not denying women treatment due to perpetuating the myths.
We'll have to see if any of the nursing students pay attention to my honors project on all headache types. It does work to try to dispel some of the myths related to clusters and also more accurately describe the disorder. But unfortunately, I couldn't devote enough time just to clusters since it is a presentation to improve the quality of ALL headache education.
Ah well... live and learn the hard way sometimes. 
Carrie
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maureen
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Re: Push for a correct diagnosis!
« Reply #15 on: Mar 11th, 2005, 9:01pm » |
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I followed that thread as well, you should be patting yourself on the back Margi.
It's sad Drs are reluctant to give CH suffers 02 but will fill your pocket with meds.
hmmmmm whats that tell ya
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Gator
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Re: Push for a correct diagnosis!
« Reply #16 on: Mar 12th, 2005, 4:06am » |
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I think this thread needs to be stuck up top of this board, the meds board and the getting to know you board. It's just too important to let this fall off the bottom. This very thread exemplifies why we question symptoms and medications, even for people who say they were diagnosed by a doctor. I think the people who get all bent out of shape because we appear to be trying to exclude them from this site should be sent here so they understand that we DO care and THIS is why. It is much better to have a delayed but correct diagnosis of cluster headaches than a quick incorrect one.
Having clusters won't kill you. Taking the cluster meds when you don't have them just might.
Thanks Margi for keeping a watchful eye on us all and for sharing things like this.
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magman
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Re: Push for a correct diagnosis!
« Reply #17 on: Mar 12th, 2005, 7:37am » |
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Many thanks Margi, for your dedicated support and the knowledge you disseminate to all of us.
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Redd
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Re: Push for a correct diagnosis!
« Reply #18 on: Mar 12th, 2005, 9:35am » |
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Margi you are one in a million! Great catch, and I hope that many many blessings are bestowed on you for all you do.
You've been an advocate to so many and were one of the first ones to take me by the hand when I first got here. Wish I could hug ya for that. Thank you again for all you do.
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catlind
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Re: Push for a correct diagnosis!
« Reply #19 on: Mar 13th, 2005, 12:48am » |
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Couldn't agree more with what's written in this thread. There was a gal at Ft. Drum that was diagnosed with migraines without investigation, she dropped dead from an aneurysm, so MRI/CT is an absolute must in problematic severe recurring headaches.
Of course I'm a woman so I'm still trying to get a correct diagnosis, the 6 neuros (including Walter Reed Army Medical Center and New England Center for Headache) must be wrong about the clusters .... a girl can hope can't she?
Cat
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Margi
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Re: Push for a correct diagnosis!
« Reply #20 on: Mar 13th, 2005, 2:00pm » |
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um, hold on a second folks. I mean, thank you for all the flowery shit you say about me, but that was SO not the reason for bringing this post over to the American board. My POINT was that all too often folks are misdiagnosed with potentially lethal outcome. I just want everyone to be aware and educated into their own treatment regimes. That's all.
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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IMHO (which in my universe is correct)
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Gator
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Re: Push for a correct diagnosis!
« Reply #21 on: Mar 13th, 2005, 11:28pm » |
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on Mar 13th, 2005, 2:00pm, Margi wrote:um, hold on a second folks. I mean, thank you for all the flowery shit you say about me, but that was SO not the reason for bringing this post over to the American board. My POINT was that all too often folks are misdiagnosed with potentially lethal outcome. I just want everyone to be aware and educated into their own treatment regimes. That's all.
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Margi, I know why you posted this here. This kind of stuff can't be stressed enough. I am very glad you posted it as is everyone else.
Now shut up and take a compliment ya hard headed broad. You deserve it.
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Margi
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Re: Push for a correct diagnosis!
« Reply #22 on: Mar 14th, 2005, 2:14pm » |
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LOL yessir, Gator. Thank you. OK? 
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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jokrs2
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Re: Push for a correct diagnosis!
« Reply #23 on: Mar 14th, 2005, 5:16pm » |
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I also want to give out a big thanks to Margi. You are a blessing indeed.
I had a doctor tell me that there was nothing wrong with me after I had gone from 160 lbs to 115 lbs at 5 foot 11 inches tall. My wife said "bullshirt"! Next day took me to an abdominal surgeon who immediately removed 19 inches of blocked intestine, a gang green appendix and part of my abdomen was gang green. I also had huge herniations from bad scar tissue growth that were removed. After the operation my surgeon went out to tell my doctor that I would have probably been dead in another 24 hours. Yeah it was all in my head, just like the clusters. My wife says that I look great at 210 lbs and the fact that I bodybuild put the weight in the right places. One doctor is never enough and either is one opinion. Blessings and PFD's to everyone. Joe
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