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Topic: new member (Read 435 times) |
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katlee
New Board Newbie
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Posts: 13
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since i am a new member i just wanted to say hello and share my story. i am 41 and have had clusters since i was in my 20's. was told i had migraines and just several years ago i read an article about cluster headaches and bingo! told my doctor but he still didn't do anything different. he told me that my med which was midrin was also for cluster headaches. midrin does not work for me. so i think i will look around for a doc that knows about clusters. i have been in a cycle now for about 20 days and having shadows during the day. almost went to the hospital last night but i made it! don't want to sleep cause i know what is coming so here i am!
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tomorrow is another day....if i can make it through the night!
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TxBasslady
CH.com Alumnus
New Board Hall of Famer
Bass fishin' is a h00t It's the catchin' that sux
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Re: new member
« Reply #1 on: Feb 8th, 2004, 2:39am » |
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Hi Kat,
Welcome to the board.
Sure hope you find what you need to battle the beast.
I, too, went without sleep......thought if I stayed up past the time of the regular visit, I would be ok. But the beast is smarter than I. He just came later. So, I resorted to sleeping on the sofa in a reclined position. It worked pretty well for me. At least I did get some rest.
The sleep deprivation could cause more CH's, so be careful.
Stay around and keep posting.....let us know how you are doing.
PF vibes,
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas! 
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grelik
New Board Newbie
Hi! My name's Dave and I'm a UK clusterhead
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Posts: 4
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Re: new member
« Reply #2 on: Feb 8th, 2004, 5:45am » |
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Hi Kat. I'm new here too. I thought midrin was for tension headaches or migrain - not for CH but I'm sure the more experienced members will be along to give better advice.
Dave
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ave
New Board Hall of Famer
She is beside herself; her favourite position
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Re: new member
« Reply #3 on: Feb 8th, 2004, 5:46am » |
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Hello and sadly welcome katy Lee.
If you are looking for a knowledgeable CH-doc, visit the OUCH board, and look under OUCH resources (top bar).
One of the resources is a list of docs in different areas.
You could also print out everything you find on the left of this board and take it to your doc next time around.
Could also be, this doc is still in themiddle ages and does not believe women get clusters. Tell her/him from me, that there a goodly number of them visiting this board. We all get clusters and to confound it, we also sometimes get migraines...
luck!
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There is a break in reality. Do not adjust your mind.
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stevegeebe
CH.com Alumnus
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I love YaBB 1G - SP1!
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Re: new member
« Reply #4 on: Feb 8th, 2004, 8:48am » |
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Hey Kat and welcome.
See if you can get some o2. The fear of going to sleep and the results of not doing so use to be "one" of the worst parts of being a clusterhead.
Having o2 this time around allowed me to at least get a part of my life back during the cycle. When I went to bed, I knew I could beat back the nightly attacks in short order.
No sleep+CH pain=zombie.
Good luck.
Steve G
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Mark C
CH.com Alumnus
New Board Hall of Famer
Onward through the fog.
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Re: new member
« Reply #5 on: Feb 8th, 2004, 2:32pm » |
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They sent me down the Midrin road also, no good also.
Sounds like you are already on the road to a better Doc. That alone is a battle in itself. Most of us go through many before a decent one can be found. They just don't teach em' much about CH...we hope to change that.
Have you joined O.U.C.H. ?
I will attach some of my favorite links to aid in your CH PHD!
PFDAN's
Mark
Doctors
Meds
Information
Alternative Therapy
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Click The Flag
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Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
    
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Re: new member
« Reply #6 on: Feb 9th, 2004, 1:17am » |
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Welcome to the fold Kat. You'll find lots of support and ideas here for dealing with this horror. One thing I agree on is sleeping in a recliner or at least not flat. It reduced my attacks by one a night as a rule. That was enough for me.
Here are two links. The first is a technique that worked for me:
http://www.netsync.net/users/charlies/
This one is to help others understand that this has nothing to do with what is thought of as "headache:"
[url]"http://www.ouch-uk.org/ch/note_colleagues.cfm" [/url]
Good luck and let us know how you're doing.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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bobkip
New Board Old Timer
I love YaBB 1G - SP1!
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Re: new member
« Reply #7 on: Feb 9th, 2004, 2:13am » |
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Welcome Katlee, sorry you're here. Don't know about midrin but oxygen works great for me. But, O2 MUST be done right. Most docs raise their eyebrows when I tell them I do 10 to 12 lpm (the usual flow rate is around 3 for those with breathing probs). Best of luck and do stay in touch.
Kip
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Callico
New Board Hall of Famer
Proud Dad of a US Marine!
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Re: new member
« Reply #8 on: Feb 9th, 2004, 2:34am » |
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Welcome aboard. Wish you weren't here! (How's that for a welcome?)
I ditto Kip's post.
Jerry
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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sandie99
New Board Hall of Famer
Wish it, dream it, do it - inspite the pain!
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Re: new member
« Reply #9 on: Feb 9th, 2004, 9:11am » |
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Katlee,
welcome aboard! 
It is always sad that someone has to suffer this beast, but I am so glad that you found your way here! This place is a blessing!
Best wishes & pain-free days,
sandie99
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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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BlueMeanie
Guest
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Welcome Katlee !
Looks like you do need a new doc. There a lots of meds to help us cluster sufferers. Read all you can and take the info to the doc. Get some meds that work. Imitrex is the best abortive for most of us. Lots of prevents too.
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ClusterChuck
CH.com Alumnus
New Board Hall of Famer
The BEAST rises again, and again, and again, and .
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Re: new member
« Reply #11 on: Feb 10th, 2004, 11:10pm » |
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Welcome, Katlee, sorry you have to be here, but glad you found us.
This site should give you a lot of information to help you to live with this affliction. You may find that you have to train your doctor. If you get one who does not know a lot about CH, but willing to listen and learn, KEEP HIM/HER! It is not critical that they know a lot about them, as long as they are willing to learn. My neuro always asks me (after our greetings and pleasantries) "What are we gonna try now?" she does her homework too, but always asks me what I would like to try, too. She then investigates it, then checks with my cardio (I have a bad heart) and then give me her recomendations and scripts ... What a great doctor to have, but it takes time and training to get them to the receptive point. Remember, just because your doctor has PHD after their name, does not mean they have all the answers. Some times, it just means Piled Higher and Deeper!
Post to us with your questions, bitches, crying, whinning, jokes or what ever. We are here for you, as we hope you will be here for us. Just because some of us have had this for 25 or more years does not mean that we don't need a shoulder to cry on at times too! We all need support, at times, and hopefully all of us can give support just as much.
Welcome!
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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katlee
New Board Newbie
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Posts: 13
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Re: new member
« Reply #12 on: Feb 11th, 2004, 12:19am » |
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thank you all for the welcome and info. i really appreciate it.
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tomorrow is another day....if i can make it through the night!
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