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Topic: Just Joined The Group (Read 525 times) |
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tiredofclusters
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Just Joined The Group
« on: Jan 25th, 2004, 9:06pm » |
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Hello All,
My name is Neal, I've have clusters for about 5 yrs. now.
Havn't had one in the last 2 yrs. till 2 weeks ago. Thought they where gone for good,duh, wrong answer!
I started having them an didn't have a bit of meds.
Called my neuo. and he couldn't see me till the middle of fedruary. I though OH S--T, i can't go threw this with no meds. Had my wife call a local Dr. friend to see if he could see me and he could. Carried my perscription from the last time i had them filled. All he done was ask
me some questions and check a few things(blood pressure, breathing) and ask me what i needed.
Gave him the perscriptions that i was taking 2 yrs. ago.
He said sure, I'll write them for a whole year(imitrex injection and zomig). This Dr. just saved my life because i couldn't go threw a month or more with the devil.
I have most of my clusters at night right after i go to sleep. I did find out that if i take a zomig before bedtime i wouldn't have a CH that nite.
thank ya'll so much,
Neal
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brad267
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Re: Just Joined The Group
« Reply #1 on: Jan 25th, 2004, 9:28pm » |
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Jeez,
Ya couldn't schedule your CH for a Feb start??? Gotta love those Neuro's.... FIND ONE THAT HAS WALK-IN'S. I've found that those are the ones that truly care about you, and not the almighty dollar.
The neuro's that cram their patients so close together, and so far out into the future..... They can go to hell!
My Neuro blocks 7am-8am for walk-ins, for anyone. He gets to make his big bucks, from 8am-4pm, but anyone can have him for the first hour of the day.
Jeez, even a Dentist will push out his patients to do an emergency filling...
Welcome aboard, sorry ya found us... Hope you stay!
Brad
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-- He felt that his whole life was some kind of dream and he sometimes wondered whose it was and whether they were enjoying it.
Douglas Adams (1952 - 2001), "The Hitchhiker's Guide to the Galaxy"
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Little Deb
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Re: Just Joined The Group
« Reply #2 on: Jan 25th, 2004, 9:28pm » |
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Welcome to clusterville!!!
Since you are in TN, you are welcome to come meet other clusterheads at our get together here in Raleigh, NC on Jan. 31st. Check the thread on it.
Or email or IM or ask anyone.
You have found the right place to call "home" and you have a new family.
Little Deb
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Adopt a shelter pet!
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5-string
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Re: Just Joined The Group
« Reply #3 on: Jan 25th, 2004, 9:35pm » |
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Welcome Neal.
Alot of reading and learning to be had here,that's for sure.
Sorry you're suffering. These things suck.
...Mark..
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Sean_C
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Re: Just Joined The Group
« Reply #4 on: Jan 25th, 2004, 9:40pm » |
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Hows it going,
Had a nice break (2 years).........there are people here that would kill for 2 weeks LOL.......some 2 days even.
However if you need us where here....
Your Zomig results were awesome.
Does everybody here that takes Zomig before bed sleep all night. Please let me know, cause when I'm peakin I ain't sleepin..........nothin worse than wakin up with an eight thats just beggin to be a 10 
Wishin all PFDAN
Sean......................
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tiredofclusters
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born to live, not to hurt
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Re: Just Joined The Group
« Reply #5 on: Jan 25th, 2004, 9:50pm » |
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Thank Ya''ll so much for the warm welcome. Yes, looks like i have a lot of reading to do.
lil deb, can't make it to Raleigh, hope to be in Orlando that week. but i'am going to try and make the nashville trip.
thanks,
Neal
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ckelly181
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To err is human; To forgive, canine.
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Re: Just Joined The Group
« Reply #6 on: Jan 25th, 2004, 9:55pm » |
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Hey Neal,
Welcome to the board. Nice that your regular GP is on your side. Lots of stories here that would make you believe GP's are satan's spawn. It's heartening to know that's not true all over!
Chris
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BobG
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Re: Just Joined The Group
« Reply #7 on: Jan 25th, 2004, 11:20pm » |
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Welcome to the board Neal.
on Jan 25th, 2004, 9:40pm, Sean_C wrote:
Your Zomig results were awesome.
Does everybody here that takes Zomig before bed sleep all night.
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I don't think taking Zomig before bed every night is a 'normal' thing for most here but it has been posted before. Also melatonin has been mentioned to be helpful before bed. I'm not a doctor and haven't tried either so you're on your own.
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Stay stressed. Never relax. Never sleep. Ever.
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rumplestiltskin
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Taking Zomig and Imitrex and other triptans as preventatives is a topic worth exploring. It has certainly not received much press here. My neuro acted like it was perfectly normal. She requested I journal my CH and then take triptans before the "regulars" usually hit. After years of reading here I was kinda shocked cause that was so unusual....
My personal research with that never got off the ground. I went into remission.
We need more folks who have done this to report their experiences.
Wage Peace
den
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brad267
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Re: Just Joined The Group
« Reply #9 on: Jan 26th, 2004, 12:05am » |
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When in cycle, my CH is extrememly predictable, and I can actually set an alarm for 30 mins or so BEFORE the next attack, and take a shot of Imitrex, and manage to sleep through many headaches.
To that extent, I get better sleep. Is that preventative?
Brad
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-- He felt that his whole life was some kind of dream and he sometimes wondered whose it was and whether they were enjoying it.
Douglas Adams (1952 - 2001), "The Hitchhiker's Guide to the Galaxy"
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BlueMeanie
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Re: Just Joined The Group
« Reply #10 on: Jan 26th, 2004, 12:07am » |
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Tired of Clusters. We sure are.
Glad to hear you got meds quick. That's all we can hope for sometimes.
Welcome to Clusterville. Sending vibes that you will have a short cycle and be PF soon.
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Charlie
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Re: Just Joined The Group
« Reply #11 on: Jan 26th, 2004, 12:49am » |
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Welcome aboard and here you'll find friends with good ideas and ways to deal with this horror. Here is a technique that worked for me:
http://www.netsync.net/users/charlies/
Good luck and let us know how you're doing.
Charlie
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Callico
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Re: Just Joined The Group
« Reply #12 on: Jan 26th, 2004, 1:07am » |
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Glad you found us. Grab an oar and help us row to a cure.
It's great you found a doc that practices medicine instead of what most of them are doing to us. Interesting use of Zomig. Haven't tried it yet. Really interested in your results. Keep us posted as you go along.
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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Marc
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Re: Just Joined The Group
« Reply #13 on: Jan 26th, 2004, 2:39am » |
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Most of us see these drugs as abortives, but some episodic's can avoid the night attacks by taking a Triptan (Imitrex, Zomig, Maxalt, Amerge, Frova, Relpax) before bed as a preventative - if they know that they are going to get hit without it.
It would make sense to find which one of the longer lasting versions works best for this purpose. Example, Amerage is worthless to me as an abortive because it takes too long to work. But it could be the right choice for night time. (Frova and Relapx are supposed to have the longest lasting effect)
If memory serves, Ueli took Amerage many/most nights. Whatever works.......
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| « Last Edit: Jan 26th, 2004, 2:40am by Marc » |
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Wifeofchman
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Re: Just Joined The Group
« Reply #14 on: Jan 26th, 2004, 6:05am » |
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Welcome, I wish I could take pill before bed and sleep al night. It's been 6 weeks of laying on the couch every night as to not wake my wife and child up. Nicotine and cold seem to work well in aborting my CH but only if I wake up before it hits hard. I made an appointment to see a neuro and couldn't see them until jan 20th. I was admitted to the hospital 5 days after Christmas and to my surprise I got to see the same neuro who couldn't see me until the 20th which I made the date back in the 2nd week of december. I still remember arms folded and he kept asking me what's the problem. Fucker, I've been working with my GP and he's referring to another neuro that I don't even have to see. Most of them are money grubbing not a very nice persons and think were some kind of drug addicts. I figure hit them in the head with a bat 3 or 4 times every night and see how they feel in the morning!
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TTYL,
Carrie
Wife of CH Sufferer
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Mark C
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Onward through the fog.
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Re: Just Joined The Group
« Reply #15 on: Jan 26th, 2004, 6:28am » |
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Welcome to the board fellow Tennesseen'. Sounds like a pretty good Doc you have. If you come through Knoxville holler at me and we can have a cup o' joe or something.
PFDAN's
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benj
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Re: Just Joined The Group
« Reply #16 on: Jan 26th, 2004, 9:10am » |
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welcome to the fold, (the one that ALL of us wish we didn't have to know about, yet glad somehow that we are). You'll find this a fantastic place to vent and also to share good news...
Oh, and FANTASTIC find of the Dr. who will perscribe for a year - all the Dr.'s and Pharmasists down here in Oz will give you 6 injections and 6 nasal sprays (of Imigran) MAX (even this needs emploring). when that is used (sometimes in a week) yuo just have to go back again, paying all the way. But at least while my wallet has no seams left, this Dr. friend has saved YOU some pretty pennies - GREAT.
keep faith, your cluster may be ending just around the corner. wishing you healed
ben
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cootie
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Re: Just Joined The Group
« Reply #17 on: Jan 26th, 2004, 12:55pm » |
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Hey there tiredofclusters and a few other new folks I missed. Brad's neuro had a 3 to 4 month waiting period.....NO EXCEPTIONS ! Course the nurse commented that "if" he'd of kept up goin for regular office visits once to twice a year 'no matter what' they'd of taken him in within a month or so maybe.....and possibly called in meds to get him buy. BUT....since he refused to go alog with there 'make me rich' scheme he was outa the picture. The place was a fairly long ways off and no evening hours either.....so it'd also cost him a day of work to go in jus to 'check in' regular and pay that $ 150.00 office visit to walk in and out with nothin ta say when outa cycle for 3 years. Our internalist doc has done WONDERFUL helpin Brad out so we been lucky there and not hardly any wait to get in !!! OK...time to go shovel more snow Pam
I WILL proofread before I post....I WILL proofread before I post.....I WILL..........oh never mind..................... 
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| « Last Edit: Jan 26th, 2004, 12:58pm by cootie » |
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cakelady
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Re: Just Joined The Group
« Reply #18 on: Jan 26th, 2004, 1:07pm » |
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Welcome, sorry you're here.
I just got hit after 7 years PF. At first, like you, I was terrified. But this wonderful family has helped save my butt. They let me know they cared and reminded me that I had gotten through this nightmare before and can do it again. We can come out stronger for our trouble.
Hang in there. Great luck with the Doc. Sometimes Neuros can be such shits.
Cakes
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TxBasslady
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Re: Just Joined The Group
« Reply #19 on: Jan 27th, 2004, 2:55am » |
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Hi Neal,
Welcome to the board.
This place is known for great support.....good advice..
and the best people in the world!
Enjoy !!!!!
Pf vibes,
Jean
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ClusterChuck
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Re: Just Joined The Group
« Reply #20 on: Jan 27th, 2004, 3:46am » |
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on Jan 27th, 2004, 2:55am, TxBasslady wrote:and the best people in the world!
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Well, there ARE one or two decent people (like me) here ... But the rest? DANGER DANGER!!! Most of them are nucking futs!!! Heehee!!!
Seriously (who ME?), there are some great folks here. Welcome aboard, and grab an oar. It take all of us to row this boat to our destination of Cureville!
If you ever get a chance to meet another clusterbud, GRAB AT THE OPPORTUNITY! You will never feel the same with anyone else! Go to a meet 'n greet! Get involved with ch.com (here) and with OUCH!
Chuck
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Edna
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Re: Just Joined The Group
« Reply #21 on: Jan 27th, 2004, 10:55pm » |
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Neal, welcome to your home here.
Sorry to know that you're yet another among us, but delighted to have you.
Seek out your fellow cluster buds here, you'll truly be amazed at our power of support!!!
pf wishes,
EDNA
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