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Topic: family tendencies (Read 423 times) |
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maura03063
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family tendencies
« on: May 27th, 2003, 8:41am » |
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I am a "newbie" here but no stranger to CH. When I was a kid. my dad suffered from CH and nobody had any idea of what was happening to him. He saw ER docs, neuros, even a dentist who took out all his teeth!
Now it's my turn. About 2 years ago I had my first. Suddenly I understand the writhing pain I saw in Dad and the frustration knowing there was little or nothing that could be done.
Although there have been times when I want to plead with my husband to bring me to the ER, I remember that I will probably have to wait longer to see a doc than the the damn thing will last and that there is very little that they could do if they saw me at the 30 minute worst pain moment. Cold comfort 
I am 1 0f 69 in 100,000 - a very select group! (Lucky me!) The biggest comfort I have found is here! Thanks to all who submit their stories and advice.
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car_guy
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Re: family tendencies
« Reply #1 on: May 27th, 2003, 9:03am » |
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Not only am i new to this website, but im new to this whole internet thing. It's really quite frustrating to know there is a site which i can really relate to, yet have no clue as to what Im doing. For starters...has anyone rec'd my cry for HELP!!!!
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fubar
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Re: family tendencies
« Reply #2 on: May 27th, 2003, 9:09am » |
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car_guy,
You've managed your first post here, so do what you did again and post your story here. That looks like your first post, so nodody recieved anything yet. If you need help, there is a "Help" button along the main choices along t5he top of the screen. Give it a try.
-Fu
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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car_guy
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Re: family tendencies
« Reply #3 on: May 27th, 2003, 9:25am » |
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GOOD! Im glad to see Im doing something right. My story...short version...I am a 44 year old male who has been suffering with CH for about 17 years. Had no clue for about 3 years what the deal was until i was finally diagnosed as having CH. Went through months of TRY THIS...TRY THIS...OK TRY THIS. Nothing until first, the immitrex injections. Excellent! RELIEF! started to feel like a pin cushion. Now, the immitrex spray works fine (usually). Thought i had this thig beat until 4 days ago. that was after 16 months of no attacks. Going back the Doc today. Going away on vacation to Hawaii on June 2nd. How's that for timing! Again.. thank God i found this website and can possibly learn better how to deal with this.
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fubar
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Re: family tendencies
« Reply #4 on: May 27th, 2003, 9:42am » |
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car-guy,
Sounds like you're in the right place. Anything in particular you need help on?
-Fu
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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car_guy
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Re: family tendencies
« Reply #5 on: May 27th, 2003, 9:50am » |
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Not at this time -Fu, but thanks for acknowledging me. Like i said, Im new at the internet, and this is actually my first 'chat'. Thanks for being there! I'll be back!!
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don
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First time on the internet and there is where you landed? Holy Christ, took me years to find this valley of the doomed. You haven't typed "girlies" into the search box yet?
Lots of good stuff here to help you live and manage CH.
Stick around.
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Donna
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Re: family tendencies
« Reply #7 on: May 27th, 2003, 11:33am » |
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Well, geeze, we lost sight of maura.......sorry.
Glad you found us and hope you stay to share your thoughts and experiences, as well as enjoy the resources we have in the left margin and in our archives. This is an interesting place. We have our moments, just like all families, but for the most part, we have really bonded and care about each other. Some of us go back to the beginning of life here.
What are you doing for your pain? What meds have you tried? We'd like to hear about you, too.
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maura03063
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Re: family tendencies
« Reply #8 on: May 27th, 2003, 11:48am » |
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just coming down from one now - phew!
After seeing my father's experiences, I have avoided seeing a doc. What our family went through with Dad left me feeling that I need to help myself and not put any faith in medical community - cynical but...
Generally I get 1 or 2 day - noonish and around 7pm and they last about 45 mins to an hour. At first, I just cried and walked around like a crazy lady. Now there are 3 things that I try to accomplish. At the very first signal of the onset, I use MigraSpray - a feverfew sublingual spray. Then I grab some ice and pack it on my head. Finally, I take "deep cleansing breaths."
None of these remove the pain but every so often it'll go away a bit faster and maybe not peak as badly.
When all else fails, I lie on the couch and swear like a drunken sailor. ;D
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cathy
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Re: family tendencies
« Reply #9 on: May 27th, 2003, 12:22pm » |
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Maura / Car Guy...welcome to you both...!!
Cathy 
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My own tears would mean nothing to me, if I could stop you from just shedding one....
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Brian_Y
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My daddy has rickets.
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oringkid
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Welcome Maura and Car_guy!
Check out all the buttons to the left. Lots of info here.
Lots of good people.
Sherry
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MarkHW
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Re: family tendencies
« Reply #12 on: May 27th, 2003, 3:17pm » |
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Welcome to you both, but sorry you have to be here!
I have migraine and cluster... My kids both have migraine, but so far no cluster. My oldest is only 15...
I'm praying they don't get these.
Mark
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The clusterhead formerly known as williamsmh.
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BobG
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Re: family tendencies
« Reply #13 on: May 27th, 2003, 8:17pm » |
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"cynical and swear like a drunken sailor"
maura, you're going to fit right in here. Welcome to the board.
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Stay stressed. Never relax. Never sleep. Ever.
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BobG
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Re: family tendencies
« Reply #14 on: May 27th, 2003, 8:20pm » |
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car_guy..............
Welcome to our dealership.
How'd you get the name? Got a vette, Viper, Kia?
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Stay stressed. Never relax. Never sleep. Ever.
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maura03063
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Re: family tendencies
« Reply #15 on: May 27th, 2003, 9:01pm » |
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BobG - thanks for the welcome. I really wish this was a resort in Hawaii or something but I guess a welcome is a welcome 
Mark, I have 2 kids - both adults now. My daughter doesn't seem to have problems and my son does have migranes - no CH (yet ???).
My dad's and mine both started in our 50's so maybe the kids have a few years of peace ahead of them and in a perfect world a lifetime of peace.
I have to say that this site is a blessing. It's comforting to hear from people who know exactly what this life is like. No matter how hard the people who love us try, they can't possibly understand.
just a thought to share - today I started using Migrane cold packs that I got at CVS. Although they are not very attractive, I think that wearing one (all day) seemed to help a little bit. Luckily I have bangs so the bagger at the market probably didn't notice it. Three episodes 2day and only 1 knocked me out.
TTFN all.
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Woobie
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Re: family tendencies
« Reply #16 on: May 27th, 2003, 9:12pm » |
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Woobie here.. late as usual...
Just wanted to say to you both.. welcome. You'll like it here!!
Tina 
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Charlie
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Re: family tendencies
« Reply #17 on: May 28th, 2003, 1:16am » |
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Welcome Maura and Car guy.
First, to answer the question. Nothing like Ch in my family. I hate being first in line 
You've both found a bunch of people who actually know what this horror is like. Stick around and amongst all our silliness are some good ideas.
They still laugh at me Car Guy. I've been here a long time and still wonder what I'm doing. I'm afraid to do lots of stuff on the web. Don't wanna rock the boat.
Anyway, glad to have you and keep in touch. Here is a technique that helped save my sanity. Good luck:
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
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There is nothing more satisfying than being shot at without result---Winston Churchill
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jonny
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My brother was diagnosed with CH recently, if you ask me he's alittle late seeing that i've had CH for nearly 28 years.....LOL ;D
...............................jonny
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OneEyeBlind
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Re: family tendencies
« Reply #19 on: May 28th, 2003, 4:45am » |
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Welcome to the board Maura & Car_guy !!!!!! Glad you found us !!!
Maura, I have a great doc who understands CH. Good doctors are out there but are sometimes hard to find. Give it a shot, you might be surprised with the results, especially if you go in prepared with stuff printed from this site about what works for some other sufferers.
Car_guy, if the trex works for you stick with it. You might also want to give using o2 a shot. There's lots of info about that on the board.
Good luck to both of ya !!
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Tim_w
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Re: family tendencies
« Reply #20 on: May 29th, 2003, 6:37am » |
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Maura & Car guy
Welcome aboard!!!!!!!
Been down that road with the dentist,chiropractor,family doctor!
Dont know about the family thing was adopted when I was 5 years old just learing to know birth family>
I just pray my kids and grand kid dont get it!
you are with family here!!
I read here one time if you dont get it ( you dont get it)
PFDAN to you Tim_w
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maggie_may
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Re: family tendencies
« Reply #21 on: May 29th, 2003, 10:47am » |
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Welcome Maura and Car Guy! Sorry you had to find us, but glad you're here. There's tons of information available here and we're all a crazy, but great supporting bunch of people
About the family thing, can't really say that I know of a family connection on my part. I've got both migraines and CH, but as far as I know, no one in my family has either one - I'm the first. Aren't I the lucky one!  I just hope my kids don't get this mess.
pfdans to you both,
maggie
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Strength does not come from physical capacity. It comes from an indomitable will. - Mahatma Gandhi
The human spirit is stronger than anything that happens to it. - C.C. Scott
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