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Topic: After reading many posts I guess I'm lucky (Read 390 times) |
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Whatthe
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After reading many posts I guess I'm lucky
« on: Feb 1st, 2005, 9:54pm » |
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Hello all:
I would just like to say, I feel lucky to have found this site.
The first time I was diagnosed with CH was 2.5 weeks ago.
In 1993 I was 23 years old. (I think I probably had them earlier, but cest le vie.) I was given a CT scan and diagnosed with sinus trouble. Then again 1997 I was hit with the same unbelievable pain behind my right eye.
This time it was diagnosed as subluxated and loosened vertebrae from playing football for so long. 2001 I thought it was the same thing. After suffering each time for 1 to 1.5 months they went away for about 4-5 years each time.
This time I had been going through personal life changes. Everybody thought it was stress, but until you suffer a CH, people have NO idea.
So I decided to see a doctor while having a headache. I went to a walk-in clinic and the doctor started telling me about my episodes and history without ever seeing me before. "Text Book Cluster Headaches", "I can't believe any internist hasn't diagnosed this before."
With 1 shot of Imitrex and 5 minutes the headache was gone. Since then I learned to feel the warning signs and take an Imitrex pill with the first ramp up of pain coming from the base of my head by my neck.
Here's my question(s):
1. Does anybody feel what I'll term aftershocks? For me it's mild disorientation (a feeling like your head is bobbing in water). This happens even if the Imitrex relieved the pain
2. After a headache that wakes you up in the night, are you able to function the following day?
3. Does anybody suffer from and a noticeably lower IQ, forgetfulness, mild depression?
Lastly, I took note that there is a letter "Somewhere on this site" that I can give to my employer that describes what is going on.
Will somebody kindly post a link with that?
My job performance over the last 4 weeks has greatly suffered and my stressed out, overly insensitive boss keeps threatening my job.
After reading what many of you go through much more frequently and chronically than myself, I truly count myself as Blessed.
I wish all of you a pain free day, week, month, year and decade. GODSPEED!
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| « Last Edit: Feb 1st, 2005, 10:04pm by Whatthe » |
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GOD only gives us what we can bear
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E-Double
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Re: After reading many posts I guess I'm lucky
« Reply #1 on: Feb 1st, 2005, 10:08pm » |
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Welcome brother!
We have all been there and PAin is pain. "It" doesn't discriminate yet has chosen us to be the toughest SOB's around 
With triptans I get that fuzzy feeling afterwards as well.
You do learn to function because you have to and the journey brings out the better in ya.
Many of us get depressed over this... pain will do that but I think it's mostly because of the downward spiral the quality of life can take.
I have learned to LIVE and I try not question too much anymore. Kinda helps.....Ups and downs too but much better....
Ask doctor about oxygen.
also check out http://www.clusterheadaches.org/ Colleagues letter under the O.U.C.H. column.
good luck and stay positive!!
Eric
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RichardN
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Re: After reading many posts I guess I'm lucky
« Reply #3 on: Feb 2nd, 2005, 12:33am » |
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Welcome and congratulations on finding a knowledgeable doc at the right time . . . . if there's such a thing as a "right time" for a cluster, you hit the mark.
Glad you found us . . . . much caring/sharing/info here, and someone's always awake.
PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Kris_in_SJ
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Re: After reading many posts I guess I'm lucky
« Reply #4 on: Feb 2nd, 2005, 8:09pm » |
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Hi, and welcome. So sorry you have to be here, though.
Glad you found the letter - I can refer to it but never seem to remember the link (I'm self-employed).
In answer to some of your questions, when I'm in cycle I'm never in totally "right" in my brain. I'm somewhat forgetful, feel like I'm existing in a bit of a fog, and definitely slightly depressed!
I would guess it's a combo of factors - the pain you just got past, the pain you know is coming again, the constant shadow-like discomfort you have most the time when in cycle. Not to mention the meds you have to pay for, the people you have to explain your condition to, and the constant anxiety you're undergoing.
Just know you're not alone. Everyone on this board has been there or is there right now. Those of us who have been there, will be there again. Hang in, my friend!
PFDAY to you,
Kris
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E-Double
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Re: After reading many posts I guess I'm lucky
« Reply #5 on: Feb 2nd, 2005, 8:17pm » |
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Kris said it best (like may a time )
Glad to be of help and if ever in need just drop a line!
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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Boyce
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Re: After reading many posts I guess I'm lucky
« Reply #6 on: Feb 2nd, 2005, 9:49pm » |
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on Feb 1st, 2005, 10:47pm, Whatthe wrote:
Hey....thanks for posting that link, I've been looking for it....but I get a 404 on that link?
"ERROR 404
The page you requested is missing. Either you typed the wrong URL or we have a broken link.
Please check the URL you entered.
This error has been logged and we will check for a broken link."
can someone check that link or email me the pdf at bikerboyce at yahoo dot com ?....thanks in advance....
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debz
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Re: After reading many posts I guess I'm lucky
« Reply #8 on: Feb 2nd, 2005, 11:32pm » |
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I agree, well said Kris. I am also going thru all of the things that Whatthe and you said. It's difficult to cope with so much at once.
Good luck with your new doc, I am new here too --hello and welcome.
I tried out the Dear Colleague letter on a couple of friends, and the employer letter on a couple of my bosses. I think the result was positive overall, it does seem to have helped them get a better understanding of CH in general and my strange behavior in particular.
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Shared pain is lessened, shared joy increased; thus do we refute the law of entropy. -- Spider Robinson
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ReneeH
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Re: After reading many posts I guess I'm lucky
« Reply #9 on: Feb 3rd, 2005, 10:54am » |
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Kris definitely put into words what I am feeling also. I, too, am new to this, only about 2 weeks and have been living in a fog of sorts since this started.
I have found some relief from taking 6mg of Melatonin at night. The past 2 nights have been peaceful. I've been getting hit in the early morning though, but this morning it only lasted about 15 minutes and I was able to avoid taking the Imitrex! I still feel the same today though--lightheaded, foggy, just not all there.
It must be hard to go to a job while like this. I am self-employed and can adjust my hours somewhat. The dogs and cats that I take care of don't seem to mind that I constantly look like I'm winking at them!!!
Positive thoughts your way,
Renee
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I know God won't give me anything I can't handle. I just wish he didn't trust me so much!
Mother Theresa
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Whatthe
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Re: After reading many posts I guess I'm lucky
« Reply #10 on: Feb 7th, 2005, 6:12pm » |
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 Thank you guys so much !!!!
Over stupidbowl weekend I met a woman who experienced CH after almost bleeding out during child-birth.
She started getting them during the healing process.
I directed her to this site.
To answer the persons question I saved the form from OUCH and have it at http://marketvirtually.com/clusterheadache/employer_form.pdf
I wish you all pain free lives..
GOD BLESS!
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SLanegan
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Re: After reading many posts I guess I'm lucky
« Reply #11 on: Feb 7th, 2005, 10:17pm » |
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Thanks for the link for the employer letter. I am an active duty Army Master Sergeant who just today told my boss about my headaches. I got the usual reaction that just pisses me off to no end. "I get headaches all the time, you'll be alright". My first inclination was to tell her that she is full of shit. She doesn't know the type of headaches I get and my second was to tell her to go to hell, so she could understand what the devil is doing to me. Third, I wished (and I take this back with all of me) that she would experience a CH to know what I go through. (I am sorry for that!!!!)
Nevertheless, a cooler head prevailed. That is when I went online to do some research for her to know what a CH is all about. That is when I found this website. What a find!!!! Like finding gold!!!!
Anyways, found the letter for the employer, am seeing my doctor tomorrow, will have him fill out so I can give to her bitch ass.
Sorry for the cursing, just mad that she doesn't give a rats crap about it. Kinda harder I guess due to me being in the military and the whole, "Suck it up and move out Soldier" theory is so ingraned into us. At times it is a definate line we use to motivate a Soldier, but, at times, like this one, it does the opposite.
Anyways, thanks!!!!!
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sandie99
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Re: After reading many posts I guess I'm lucky
« Reply #12 on: Feb 10th, 2005, 3:07pm » |
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Hi there!
Welcome aboard.
I am so sorry that you have CH. 
I am very glad that you've found this site, though.
1. Aftershock... well, in my case, the shock is actually the realisation that the pain is gone.  But I know what you mean.
2. I function because I have to. I'd need 8 hours of sleep, though.
3. I was forgetful when I was using topamax, but not since. Depression is familiar to me... CH does get me down occasionally; usually I come here then.
Good luck with your battle against CH!
Best wishes & PFdays,
Sandie
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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jokrs2
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Re: After reading many posts I guess I'm lucky
« Reply #13 on: Mar 1st, 2005, 1:51am » |
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Hello and welcome. Glad to hear you found someone with the knowledge to give you the right diagnosis. Sorry about the CH though. I feel a bit strange on the Imitrex as well but in my case the med is working until I find something better. I'm brand new to the sight as well and the people are absolutely GREAT! Lots of experience with learning how to deal with the beast. In addition does anybody else notice a change in sense of smell during Imitrex dose and after-shadow. I'm trying the drink water, water, water treatment tonight and maybe even sleep...wow. Be pain free as possible. Blessing's, Joe
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