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Topic: Anyone have ideas? (Read 1749 times) |
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broomhilda
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Re: Anyone have ideas?
« Reply #25 on: Feb 19th, 2004, 9:05pm » |
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I have to say I agree with everyone here who responded.  We each have a story to tell, life is about challenges, bumps and glitches along the way but its what makes us who we are as people. The word Survivor here is key, you can either choose to be a survivor or continue to live as a victim and be victimized by your lifes challenges. No one has to pay you back but yourself for not taking responsibilty for your experiences and continuing to live the cycle of victimization. It will only continue to devastate your life and keep you remaining a victim of your own volition.... sorry my two cents
Andrea
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Suck it up Princess...
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Woobie
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Re: Anyone have ideas?
« Reply #26 on: Feb 19th, 2004, 9:28pm » |
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You SHOULD separate your CH and other medical problems from your mental trauma... they are NOT the same. Deal with them separately. Treat them separately.
I think you've gotten some wrong information about CH in the past - and I also think that you REALLY believe this information. Maybe ALL the people HERE are wrong..
hmmmmmmmmmm
As a wise person told me once - you cant help someone who doesn't want to be helped.
and that's all i have to say about that......
Tina
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JDH
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Re: Anyone have ideas?
« Reply #27 on: Feb 19th, 2004, 10:35pm » |
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Bottom line Leigh is that you've only got x amount of days in this life so you'd better make the most of them while you can. And besides, pity parties are boring.
my 
Jim
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Kirk
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Re: Anyone have ideas?
« Reply #28 on: Feb 19th, 2004, 11:14pm » |
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Get up and get out and about and do something. Anything.
Go to a professional and have your egg candled. Get some real treatment for your CH.
Ever thought of going fishing? I know some great places.
Salmon longer then you are tall. Halibut that out wiegh you and your mom both and crabs with longer legs.
Beats what yer doin kiddoo. Trust me. Besides a couple days at sea will cure that little libido problem.
TTFN 
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Lizzie2
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Re: Anyone have ideas?
« Reply #29 on: Feb 20th, 2004, 12:23am » |
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Hey there, just remember the words of Eleanor Roosevelt. "No one can make you feel inferior without your consent." If you dislike what someone says...agree to disagree and leave it at that. Fighting isn't going to solve anything. I do believe that calmly discussing things can solve many an issue, and if that doesn't work...then you just need to walk away.
On having clusters and a constant chronic headache, I can relate. I have not had the clusters for long, but I've had chronic daily migraine for over 3 years, and migraines since I was 8. I would have to say that the chronic daily headache has been extremely debilitating for me and also, at times, rather depressing. I've tried over 18 preventives and 15 abortives, and not one has worked. I've had 7 hospitalizations for headache...most of which lasting 2 weeks.
However...that being said, I really do think that what is most important is to keep on keepin' on. I'm 23 and a college student, and I feel that if this headache is going to be with me for the long haul, then I want to live. I'm not saying you have to go all out and be an overdriven college student or anything like that, but maybe just find one thing you like to do. A hobby or something. Something to fill your days and bring you some enjoyment.
And always get out of bed. Even on the worst days, try to get out of bed. And try to make it. If the only thing you do that day is make your bed, it is still an accomplishment. It will make you feel better about yourself. Some days you may feel like you can get a lot done, and other days you may feel like you can get nothing done. You have to learn to adjust your lifestyle so that it is workable with your level of pain...but you can't just lay down. I was just told by a new doc that the medication I'm about to start will make me not want to get out of bed in the morning. He said, however, that I must get up. He said I could sleep for 6 more hours, but it won't make me feel any better. And this is really true! I will feel better getting up, no matter how hard it is.
You DO need to find a specialist who will work with you. Taking pain meds is not the answer for CH or a chronic daily headache type. They can cause a horrible and vicious rebound which will just add to your problems. I just find it a little bit hard to believe that out of the 100s of preventives out there, there is not one you could take successfully. I have had a lot of bad reactions to meds, including anaphalactic shock from one med I was put on, but I keep trying out different ones and seeing how far we can get. There are specialists who treat primarily clusters. Dr. Mueller in Moorestown, NJ specializes in clusters and that's only a couple hours maybe from NYC. Well worth the drive to find some relief in my opinion!
I think you need to find some way to come to peace with all you are going through. To some extent, we must accept what has happened and also our headaches and other illnesses. Then with this acceptance there is much less anger and you can have the ability to move on with your life and take positive steps to get better. But try not to harp so heavily on the past, even though it is hard. You just need to know that it happened, and it IS horrible, but you have to move on with your life and handle things in the best way you can.
Just some thoughts from the peanut gallery.
Lizzie
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JohnM
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Re: Anyone have ideas?
« Reply #30 on: Feb 20th, 2004, 2:50am » |
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Firstly Leigh: PAIN MEDICATION IS TOTALLY USELESS FOR CLUSTER HEADACHES. (if that's what you have). I would suggest that you discuss getting your Dr (or yourself) to try injecting you with Imitrex during an attack, as this stops CH pain in its tracks for many here.
Secondly: What Jonny originally said, but in a much nicer way.  Do try and get a nice life for yourself!
Thirdly: Most of us are also sick of suffering with this bastard afflicition, also known as "suicide headaches"! Don't let it beat you down.
Fourthly: Stick around. Many here got badly flamed and abused when they first started posting. Suck it in and listen to the advice. Jonny is a sick twisted bastard (and proud of it)  , but you too will learn to love him soon if you stick around!
John
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ave
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Re: Anyone have ideas?
« Reply #31 on: Feb 20th, 2004, 6:41am » |
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You are probably wrong, John. This mother's son is so much in love with his trauma and his bed that he certainly won't have any attention (let alone love) to spare for anybody else.
One word to you worfsmom: you are blaming your mother for something that happened when you were a child. You are boaming for mistakes she made when she was as young as, or younger than you.
Shouldn't you come out of fairyland and face the fact that nobody is perfect, not even moms?
At the moment you are effectively blackmailing your mother for mistakes made years and years ago. Also you harshly judge people who may have suffered even worse than you and still can find it in them to help others.
I hardly if ever publicly dump on somebody here, but I am going to do so now. You are an egocentric selfserving person metaphorically speaking conceived out of wedlock.
It is possible that you have clusters as well. Clusterheads are not saints; they can be anal openings too.
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There is a break in reality. Do not adjust your mind.
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AlienSpaceBabe
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Worfsmom,
I'm sorry you're hurting, both physically and mentally....
but....
we ALL have our own baggage... we ALL have things that are getting us down.... and sometimes we don't want to get out of bed, but we do it anyway....
my (recent) example:
Dec 3 - son in car accident, ended up in hospital overnight, car completely gone.
Jan 5 - father starts radiation therapy for internal cancer
Jan 20 - house burns down, lost cat (Lisa), very lucky to be alive
Jan 21 - son in another car accident, he's fine, car's gone
Jan 23 - get sick (still sick Feb 20)
Feb 5 - move into rented townhouse, electrical fire in furnace that night, filling the place with smoke
Feb 18 - father has more skin cancer removed from his head
Do I want to stay in bed? hell yeah! Do I want to stay home from work? hell yeah! So what do I do? Get up every morning. Go to work. Take a walk, short or long, fast or slow. Make dinner and sit at the table to eat it. Read a book. Come here and support at least one other person. Take a hot shower. Fall into bed thankful for yet another day I was alive.
If you're still reading:
The best advice I can give is to eat as healthy as you can, take a walk, and visualize a huge stop sign popping up in your head whenever you start a pity-party (we ALL have them....). Medically, try to find a new doctor (a neurologist) who can treat many/all of your afflictions - you mentioned seizures: antiseizure meds are effective for many people in preventing CH attacks.
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Little Deb
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Re: Anyone have ideas?
« Reply #33 on: Feb 20th, 2004, 10:42am » |
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WOW! Love this thread!
And love all of you clusterheads that responded! All are great responses....full of love, support and compassion.
Leigh...you don't even begin to know the compassion and caring that went into jonny's post. That is the most he has typed in weeks! And with passion that only jonny can muster!! He is one of our best supporters and fellow clusterheads. He would give you his undies if you needed them!
I too am an RN. I have done some research, and diagnosed myself many years ago. Had CH for 25 years now. Thank God episodic. But I know very little in comparison to all of the wonderful people here. I will not give you much advice, except this.....
don't go away thinking you were wrong for coming here,
stick around and get to know everyone, keep reading, but don't post if you don't want to, take as much of the advice here as you can handle, it is all good advice, throw away the pain meds, and FIGHT! We have all been there, and we know that you can do it! Be thankful for what you can, and forget the rest.....take each day one at a time.
Now get your butt outta bed and get on some site and buy a plane ticket to Nashville for the convention in July. If you can't do anything else.....go to Nashville. It will no doubt change your life forever. You can find info about the convention on the OUCH site...www.clusterheadaches.org
We are all here for support. And EVERY response is full of it!
Hope you find peace soon, and start to live again.
Big Hugs....Little Deb
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Tiannia
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Re: Anyone have ideas?
« Reply #34 on: Feb 20th, 2004, 12:23pm » |
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on Feb 19th, 2004, 8:42pm, Prense wrote:
Tiannia, your typing sucks, but I love your attitude!
Chris |
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Yes I am a spell check addict. I type as fast as I think but my fingers dont go that fast. 
I went back and fixed at least some of the typ-o's
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| « Last Edit: Feb 20th, 2004, 1:06pm by Tiannia » |
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KarynG
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Re: Anyone have ideas?
« Reply #36 on: Feb 23rd, 2004, 10:03am » |
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Continually re-living the past will not desensitize your pain, but
continually LIVING TODAY will.
Hoping things are better for you soon.
Karyn
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Belle
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Re: Anyone have ideas?
« Reply #37 on: Feb 25th, 2004, 3:47pm » |
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LMFAO!!!!!!!!!!!!!-----JONNY
Belle
P.S. Anyone think that worfsmom is still around?
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| « Last Edit: Feb 25th, 2004, 3:49pm by Belle » |
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Take the time to stop and smell the roses!
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ccbiggsoo7
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Re: Anyone have ideas?
« Reply #38 on: Feb 26th, 2004, 12:16am » |
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prozac anyone! I wonder if this lady knows Jill from a few months back!
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chris
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wobbie64
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Re: Anyone have ideas?
« Reply #39 on: Feb 26th, 2004, 7:22am » |
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Hey everyone, Been here awhile, first time publicly responding...Usually do it verbally to my computer screen...
Worfsmom, if you came here, you must have had a reason more then getting the proverbial pity party for yourself... We all have skeletons in the closet, either by the actions of others or ourselves. There also is a few of us who have other medical speedbumps that we deal with along with the BEAST.. Mine is Muscular Dystrophy.. Other then that, I'm healthy as a horse. .lol
You are the only one who controls how you handle yourself..Bottomline..I average 40+ attacks a month,(no, thats not a typo) been a chronic CH sufferer since 9/89... combined with the fun activities of trying to walk on my own, getting dressed without the help of my 7 yr old daughter (Single Dad), and the simple little things like eating, taking showers, and all of the other everyday tasks that most people take for granted. But there is one thing that anyone who ever has met me, will tell you, I dont complain..IT DOES NO GOOD....You have to do your own laundry when it comes to finding a doctor that will actually understand the beast. If thats truely what you have...Pain meds dont do anything to help it..Maybe you should go to a headache center where you live...If thats Cleveland, there is one at the Cleveland Clinic, also one at University Hospital...Dr Robt Kunkel at the Clinic, is very good, but as of yesterday, The new Doc in town is Dr Guyuron . He is doing research on an actual CURE, for migrianes...Go to for the story...We might actually all have a chance at the minimum, 50% decreased, versus what we have been dealing with..As far as your attitude of thinking all of us here are insensitive, PLEASE, i have read nothing but replies from people that understand and are willing to give advice that can help you..No response equates to not caring...Dont You Think???????
Hope you find what your looking for....
Robb[b][/b]
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Woobie
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Re: Anyone have ideas?
« Reply #40 on: Feb 26th, 2004, 8:05am » |
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Welcome Wobbie64....
Wobbie64 - NOT to be confusdicated with the WOOBIE....
woobies wobble but they dont fall down...
Woobie female - wobbie MALE...
woobie not new = wobbie new.....
woobie supporter - wobbie sufferer........
woobie = 2 o's -- wobbie - 2 b's..
hoping to clear up ANY confusion......
WOOBIE
tina 
oh yeah... and i think we lost worfsmom.........(BIG suprise.......)
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ave
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Re: Anyone have ideas?
« Reply #41 on: Feb 26th, 2004, 9:21am » |
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Add to that Wobby does not seem to have lost his weeny...?
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There is a break in reality. Do not adjust your mind.
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Woobie
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Re: Anyone have ideas?
« Reply #42 on: Feb 26th, 2004, 12:48pm » |
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on Feb 26th, 2004, 9:21am, ave wrote:| Add to that Wobby does not seem to have lost his weeny...? |
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LMAO!!!! You are absolutely right......
I miss my weeny TERRIBLY! 
tina
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t_h_b
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Re: Anyone have ideas?
« Reply #43 on: Feb 26th, 2004, 7:19pm » |
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on Feb 25th, 2004, 3:47pm, Belle wrote:| P.S. Anyone think that worfsmom is still around? |
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Nah, she's long gone--or lurking-- but this thread doesn't seem to want to die!
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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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