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Topic: Diagnosed today (Read 442 times) |
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mem024
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Diagnosed today
« on: Jan 8th, 2004, 9:28pm » |
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My catscans came back clean. I do not have a sinus infection or any other problem. I am now officially diagnosed with cluster headaches and I'm now pretty scared. I have to meet with my doctor tomorrow to talk about getting started on the medications. Does anyone have any advice?
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ShariRae
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Re: Diagnosed today
« Reply #1 on: Jan 8th, 2004, 9:31pm » |
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Read Read Read... everything you can here...preventatives as well as abortives (O2)..
and most importantly....ask questions..
let us know what the neuro decides & good luck
Huggs
Shari
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Only two defining forces have ever offered to die for you,
Jesus Christ and the American Soldier.
One died for your soul, the other for your freedom.
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ClusterChuck
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The BEAST rises again, and again, and again, and .
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Re: Diagnosed today
« Reply #2 on: Jan 8th, 2004, 10:23pm » |
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Oxygen, Imitrex, Verapamil.
Oxygen and imitrex are abortives (stops a hit once it started) and verapamil is a preventative (stops or prevents a cycle from starting).
Those are probably the most common and successful treatments.
Print out the oxygen information on the left of your screen. Take it with you to show your doctor. If O2 (oxygen) is not taken properly (non-rebreathing mask and 8 to 15 LPM{litres per minute}) it will not work. Do not let him set you up with a nose canula (I think that is what it is called) or with an oxygen generating machine. The machine cannot produce a high enough flow.
Read the information found at the OUCH site also. Print out what ever you think might help you. Just remember, if you have a good doctor, he/she will be willing to listen to you and learn. If not, FIRE HIM/HER!!!!
Keep us informed.
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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manana
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Re: Diagnosed today
« Reply #3 on: Jan 8th, 2004, 10:25pm » |
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Read & study as much as you have time for Re: CH I've found that some doctors are not well informed with this problem. However, if you participate in your treatment with what you know & learn, you may one day be able to help another. I've suffered 30 yrs or so. Officially diagnosied 15 yrs or so ago. Not much has changed since then except the ch's are getting worse. There have been several new treatments made available to the public. Imitrex seems to work best for me for aborting attacks. I'm seeing my doctor tomorrow to see about trying O2. Wish you well!! 
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t_h_b
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primary chronic since 1999
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Re: Diagnosed today
« Reply #4 on: Jan 8th, 2004, 10:39pm » |
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Congrats! You don't have a brain tumor.
Like everyone here's saying, you need both preventatives and abortives.
There are all kinds of things that may or may not work for you as preventatives. You might give melatonin a try as it has helped a few of us in addition to the suggestions above. Also, you might have to take a fairly large dose of verapamil for it to work. A good indication of the knowledge level of a neurologist in regards to CH is his or her willingness to give you sufficient doses of verapamil. My internist freaks at my 480mg a day and I'm not sure he believes me when I tell him some clusterheads are taking two or three times that. My neuro doubled my dose without me even asking.
Most people get abortive relief from Imitrex injections or oxygen but there are many other things that work for some. I've been helped by intranasal lidocaine ointment and ice packs help some.
Unless you can find a cracker-jack neurologist, you'll have to direct your own treatment, so educate yourself. This site is the best place to start. www.chhelp.org is good, too.
Good luck!
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| « Last Edit: Jan 8th, 2004, 11:09pm by t_h_b » |
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Rick_K
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Re: Diagnosed today
« Reply #5 on: Jan 9th, 2004, 12:25am » |
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Read everything here and at the OUCH site. Do talk with you doc about O2, it's cheap, won't hurt you but as Chuck said it MUST be uesd correctly. Print out the oxygen info and take it with you to your appointment.
Welcome...I'm happy you found us and sorry you need to be here but will you not find a greater group of people nor any better supporters.
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episodic since 1969........damn
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Charlie
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Re: Diagnosed today
« Reply #6 on: Jan 9th, 2004, 1:30am » |
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It's good to find that you don't have some life-threatening malady but this one is no picnic. My advice is to stick around. You'll find a lot of good ideas here about dealing with this horror. Here is one that worked very well for me:
http://www.netsync.net/users/charlies/
Welcome to the fold and feel free to rant away.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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stevegeebe
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Re: Diagnosed today
« Reply #7 on: Jan 9th, 2004, 6:57am » |
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Mandy,
If you are searching for a Neuro might I recommend Dr. Debra Elliott with the Tulane Headache Clinic. (504) 588-5231.
She understands CH and what we all go through. She works with you and not on you. Big difference.
Good luck.
Steve G
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thomas
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Print all of the info off of the left, and hang around.
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Lissa
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Re: Diagnosed today
« Reply #9 on: Jan 9th, 2004, 8:37am » |
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Verapamil and Imitrex!!
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Episodic cluster survivor since 1995 at age 16.
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