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Topic: Wow that hurts! (Read 515 times) |
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Whipsmart
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Hipster Doofus
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Wow that hurts!
« on: May 11th, 2007, 12:16pm » |
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Hey all. I was awoken this morning with the icepick in the eye. That's not the best way to start the day. I tried to get through it to no avail. My doc put me on Maxalt last month. We're just starting to get to the bottom of these.
Man, they suck.
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Guiseppi
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Re: Wow that hurts!
« Reply #1 on: May 11th, 2007, 1:23pm » |
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And now as Chuck so succinctly puts it, the nosiness starts!!! Welcome to the board. I assume you already have the CH diagnosis so that's half the battle. Are you using anything besides Maxalt? Have you tried using oxygen as an abortive? Imitrex? Do you have any kind of preventative med program? When you get a chance give us a run down of where you've been with this. Then we'll all trip over each other to see who can offer you a suggestion that might help.
Seriously, a lot of great people here and lots of collective experience. I hope you find something that'll help you out.
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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Rosybabe
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"Too much of a good thing can be wonderful!!
 
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Re: Wow that hurts!
« Reply #2 on: May 11th, 2007, 1:49pm » |
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HI!
Guiseppi is right, we need LOTS of info so we may be able to help, if you need the help or just to get to know you better.
Pain free wishes for you!!
pixie dust from
Rosy
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Whipsmart
New Board Newbie
Hipster Doofus
Posts: 21
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Re: Wow that hurts!
« Reply #3 on: May 11th, 2007, 4:49pm » |
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on May 11th, 2007, 1:23pm, Guiseppi wrote:And now as Chuck so succinctly puts it, the nosiness starts!!! Welcome to the board. I assume you already have the CH diagnosis so that's half the battle. Are you using anything besides Maxalt? Have you tried using oxygen as an abortive? Imitrex? Do you have any kind of preventative med program? When you get a chance give us a run down of where you've been with this. Then we'll all trip over each other to see who can offer you a suggestion that might help.
Seriously, a lot of great people here and lots of collective experience. I hope you find something that'll help you out.
Guiseppi |
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I'll give it my best shot.
Here's my cluster related info:
My doc told me that everything I've described sounds like clusters to him. About two years ago he sent me for a scan. Nothing abnormal there. That was a relief as my mom had a brain tumor.
I didn't need seem to need much as my cycles were very far apart. Usually Excedrin Migraine, ice, showers, and getting away from others helped do the trick. This year the Excedrin Migraine basically stopped working. I explained to the doc that the headaches now laughed at the Excedrin. He had me try Maxalt. It takes a little while to rev up, but for the most part it does the trick.
I've got an app't with him again on Monday. I've burned through the Maxalt quicker than expected. I've had some doozies lately.
I have two times that I get the poker in the eye: either 4:30-5:00 am or around 5:30pm. I'm on doxepin to help me sleep at night. I'm guessing that's why I don't wake up until the pain is at its peak. I also take Concerta for ADD. I've been on some form of Concerta/Ritalin for ten years when I was diagnosed in college with ADD.
So, I think I'll come in armed with info on Monday to the doc. It sounds like oxygen is a good thing to have handy. My doc thought the Maxalt would work better than Imitrex.
Personal:
I'm a 32yo male from Michigan. I'm a special education teacher (behavior disorders). Fairly laid back guy until the hot poker comes around.
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ClusterChuck
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The BEAST rises again, and again, and again, and .
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Re: Wow that hurts!
« Reply #4 on: May 11th, 2007, 5:23pm » |
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Ummmmm ... Ok ... as far as it goes ... BUT, you didn't tell us the most IMPORTANT of information ... Which testicle hangs lowest? And which hand do you use to masterbate with?? 
Seriously, though, sorry you have to be here, but I am glad you found us. Watch out for most of them, cause they a nuckin futs!!! I am the only sane one here.
By all means get oxygen. It MUST be used the right way, in order to work. You need between 8 and 15 LPM (litre per minute) flow rate with a non-rebreather mask. The lower flow rates, and that stupid nose canula are basically worthless.
Another thing to ask for is Imitrex, but in the injectable form. The pills take way too long to work, and the nasal spray does not work (for most users) as fast as the self injector does.
Now oxygen and imitrex are GREAT, but they are abortives. They stop a hit, once it starts. You need to get on a preventative program, to keep them from even starting. Verapamil is usually the first choice, and it works very well for many. But, it takes 7 to 10 days to get working in your system. Many take a prednesone taper, for the initial portion. Prednesone cannot be taken for a long time, but works well, while waiting for the verapamil to get working. Lithium and topomax are other meds that may be used alone, or in combination with other meds.
Realize that YOU need to find out all you can, and go into the doctor's office, loaded with information, as your doctor probably knows very little about clusters.
The most important tools are the following three items, in order of importance:
attitude Attitude and finally, ATTITUDE!!!
Never ever let the beast win! You are stronger and more stubborn than he is!
Ask whatever questions you have. We will try our best to answer them.
Good luck, and keep us informed.
The secret hand shake will be given to you after the initiation rites. Have no fear of the rites, as we have not killed anyone in ... oh .. it must be at least two months since the last one died ...
Chuck
PS: Yes, I AM a sick, and deranged SOB!!!
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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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Rosybabe
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"Too much of a good thing can be wonderful!!
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Re: Wow that hurts!
« Reply #5 on: May 11th, 2007, 5:40pm » |
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listen to Chuckie, he may seem crazy  but he is not, he knows what he is talking about...
Please gather as much info as you can, you will need it at your Doc's visit so you can get what you need to stop the beast.
Good Luck and please come back and let us know how it went ...
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| « Last Edit: May 11th, 2007, 9:41pm by Rosybabe » |
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Believing is just the beginning!
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George_J
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Re: Wow that hurts!
« Reply #6 on: May 11th, 2007, 9:19pm » |
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on May 11th, 2007, 4:49pm, Whipsmart wrote: I've been on some form of Concerta/Ritalin for ten years when I was diagnosed in college with ADD.
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That's interesting. If I recall correctly, there was a brief period when Ritalin was being prescribed to treat CH. Haven't heard anything about that for some time.
Apparently, Ritalin does not help with your CH.
Best wishes, and welcome,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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TonyG1
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Hi Whip sorry you're in pain and have to be here.
As Chuck indicates, in addition to abortives (Maxalt, Imitrex, O2), you might want to check about preventatives... verapamil works well for many of us out here ...
As far as any initiation rites Chuck spoke of ... since you have CH ... I suspect you've had to walk thru fire already...  Welcome aboard !! 
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sldrswyfe
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Re: Wow that hurts!
« Reply #8 on: May 13th, 2007, 5:21pm » |
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Hi Whip,
Sorry you are here, my sentiments reflect everyone's here, but glad you found this place...being that you are new to the game...you will learn things that a majority of us had to live through to learn.
I can't not stress enough...OXYGEN at 10-12 liters...and as Chuck informed you, used for abborting CH's.
I don't think one person here could truly live without it...and knowing there is at least one thing that saves us.
Welcome!!
Sherri
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"Great spirits have always found violent
opposition from the mediocrities." -Einstein
"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot
"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
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andrewjb
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when the love of power becomes the power of love !
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Re: Wow that hurts!
« Reply #9 on: May 13th, 2007, 7:23pm » |
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, well whips, there it is layed before you, the most knowlegeable site on the web, with great spirt. welcome. read, read, read. andrew.
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| « Last Edit: May 13th, 2007, 7:24pm by andrewjb » |
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Whipsmart
New Board Newbie
Hipster Doofus
Posts: 21
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Re: Wow that hurts!
« Reply #10 on: May 13th, 2007, 11:33pm » |
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Thanks for all the replies! I'll let you know what I find out when I go to the doctor's office tomorrow after work.
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E-Double
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Re: Wow that hurts!
« Reply #11 on: May 14th, 2007, 10:28am » |
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Thank G-d another Behaviorist 
I'm also a Special Ed Teacher (though I no longer teach in a school) and a Board Certfied Behavior Analyst.
Being that you are from Michigan, do try to get an appointment @ MHNI http://www.mhni.com
Looking forward to talking with you and helping you on your journey!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Whipsmart
New Board Newbie
Hipster Doofus
Posts: 21
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Re: Wow that hurts!
« Reply #12 on: May 14th, 2007, 7:06pm » |
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Thanks all. I met with my doctor for awhile today. He wants to put me on a preventative: Inderal LA. It's a beta blocker. He said that should help out. Since the Maxalt works when I take it, he said to use that when I need it too. He also scheduled me for an MRI. I had a CT scan three years ago.
He said he wants to make sure there's nothing else going on up there. I assured him there wasn't. He said he'd like to give the beta blocker a chance to help out before changing anything else and trying oxygen. I'm fine with that. The Maxalt does do the trick, it just has its own time table.
So, I go back in a month to see how things are going. My blood pressure was fairly low: 100/70. My pulse was down too. I guess it's easier to relax when your head isn't killing you. 
So at the age of 32, I'm beginning to get quite the medicine cabinet. Thank God for great insurance!
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Kevin_M
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withered branches grow green again.
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Re: Wow that hurts!
« Reply #13 on: May 14th, 2007, 7:55pm » |
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on May 14th, 2007, 7:06pm, Whipsmart wrote:preventative: Inderal LA.
He said he'd like to give the beta blocker a chance to help out before changing anything else and trying oxygen.
So, I go back in a month to see how things are going. |
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Keep a headache log on yourself and see how the Inderal is doing. Giving it a month's chance with sub-par results can be a long time into an episode to have to change and start another preventative, if need be. Give doc an update report within two weeks, it's never too early to start oxygen needing an abortive.
Good luck and welcome.
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| « Last Edit: May 14th, 2007, 8:11pm by Kevin_M » |
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E-Double
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Are we ourselves?
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Re: Wow that hurts!
« Reply #14 on: May 14th, 2007, 8:26pm » |
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Get the Oxygen Now!
Taking time to see if a preventative medication will reach some sort of therapeutic level has nothing to do with providing you relief for acute pain.
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| « Last Edit: May 14th, 2007, 8:27pm by E-Double » |
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Whipsmart
New Board Newbie
Hipster Doofus
Posts: 21
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Re: Wow that hurts!
« Reply #15 on: Jul 1st, 2007, 2:49pm » |
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The Inderal LA ended up helping a great deal. Either my cycle ended or this stuff is the shizo. I don't care which is which, I'm just happy they're gone for now. It took a little about a week for them to go away completely, but I've been pain free for awhile. The meds only made me tired for the first day. I'm guessing that's a nice side effect of my ADD.
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