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Topic: I feel like I have discovered gold! (Read 610 times) |
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chuckv
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I feel like I have discovered gold!
« on: Jan 30th, 2008, 1:16pm » |
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I just discovered this wonderful site yesterday and spent the whole day browsing around the different topics and information. I can't believe I have found a site with so much support and information.
I will be 50 in 4 days and I have been clustering since February of 06.
I originally thought it was sever sinus headaches. (Okay, very severe)
I went to my ENT and he said my sinuses were fine but thanks to his quick thinking, he suggested it mught be cluster headaches and referred me to a wonderful Neurologist.
Although I have found nothing to prevent them, I have been able to calm the attacks down with Zomig.
I had a bad expereince with imitex that ended up in an ER visit.
I have a wonderful support person in my wife and although she doesn't fully understand the pain, she at least gives me the support I need.
She too is learning more with the information on this site.
I am already making plans for Dallas in July and look forward to a long association with the rest of my cluster heads.
Thank You!
Chuck
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artonio7
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Re: I feel like I have discovered gold!
« Reply #1 on: Jan 30th, 2008, 1:22pm » |
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Welcome home Chuck!
It's a kick in the ole rubber parts that you have to be here... but you found the best place to be. Soon others will be around to welcome you.
stick around... you're part of the family.
with warm regards,
Tony
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Hope! http://artonio7.com
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vietvet2tours
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Re: I feel like I have discovered gold!
« Reply #2 on: Jan 30th, 2008, 1:42pm » |
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Oxygen is your friend and a mighty fine weapon.
Potter
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Kill em all let God sort em out
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DennisM1045
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Re: I feel like I have discovered gold!
« Reply #3 on: Jan 30th, 2008, 1:43pm » |
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Welcome to the family Chuck! I'm so sorry to hear we are related.
As you've already seen, there are many helpful folks around here. I found this place last June after suffering for 12 years without even a diagnosis. You are luck to have been dx'd so quickly.
My main abortive is Oxygen with energy drinks, strong coffee and my last resort is Imitrex injections (I see they won't work for you).
Anyway, you have a lot of reading to do. So settle in and lets see if we can't help each other.
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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chuckv
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Re: I feel like I have discovered gold!
« Reply #4 on: Jan 30th, 2008, 1:51pm » |
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Thanks for the warm welcome from my new family! 
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Guiseppi
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Re: I feel like I have discovered gold!
« Reply #5 on: Jan 30th, 2008, 1:54pm » |
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Another strong vote for oxygen here! I'm 48, about 30 years of dancing with the beast and 02 is still my first line abortive!
Welcome to the board, I hope to be at Dallas also. Meeting with a bunch of cluster nuts is an experience unlike any other. You won't find a more beautiful giving group of people in your lifetime. Welcome home!
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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chuckv
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Re: I feel like I have discovered gold!
« Reply #6 on: Jan 30th, 2008, 2:18pm » |
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I am working on the script for Oxygen from mt Neurologist. He suggested it too.
I had not heard of the energy drink idea. Do you drink one when you feel it coming on?
Coffee too? I love coffee!
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RichardN
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Re: I feel like I have discovered gold!
« Reply #7 on: Jan 30th, 2008, 2:30pm » |
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Hi Chuck . . . Welcome to Clusterville
And yup, you've hit the motherlode of CH info/caring/sharing. I'll be 61 in Mar., CH since 1/01 . . . here since 2/02 . . . . was a basket-case when I got here . . . this site and these folks gave me my life back, and why we refer to it and them as "home" and "family".
I can't use Imitrex either (some artery blockage and high cholesterol . . . . . your problem too?), so 02 is my only abortive . . . can usually kill him in minutes if used early-on in the attack. Please let us know if you have this available yet.
Also . . . advise us what other meds you are on and whether they are working for you. For me, it was Verapamil that finally gave me my first PF day in over a year . . . dosage varies for different folks.
Please read the thread started by K-MAN . . . Variation on Water Therapy . . . on the Medications/Therapies board . . . might be worth trying.
Also, if your wife would like to chat with other supporters who UNDERSTAND what she goes through . . . the Supporters Board might be very helpful for her.
Very glad you found us . . . Welcome Home
Be Safe, 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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DennisM1045
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Re: I feel like I have discovered gold!
« Reply #8 on: Jan 30th, 2008, 2:40pm » |
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For me O2 can knock the beast down but he doesn't always stay in his cage. Back up the O2 with an energy drink and I'm usually good to go.
You slam it down as fast as possible right before getting on the O2.
-Dennis-
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RichardN
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Re: I feel like I have discovered gold!
« Reply #9 on: Jan 30th, 2008, 2:41pm » |
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TIME TO BUY SOME LOTTERY TICKETS!
Not only are you lucky enough to have found us, but extremely lucky to have a neuro who's suggesting 02 right away. Tell him he's welcome here too.
Do make sure your script specifies 15 lpm regulator and non-rebreather mask (the one with the bag). Let us know when you get it and we can walk you through the use of same.
Yes, definitely coffee as soon as you feel him coming. The energy drinks preferred are the ones that contain both caffeine and taurine.
Get the lottery ticket 
Be Safe,
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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Ray
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Re: I feel like I have discovered gold!
« Reply #10 on: Jan 30th, 2008, 4:55pm » |
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Welcome Chuck:
You've been given good advice so far! Welcome to the family.
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
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chuckv
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Re: I feel like I have discovered gold!
« Reply #11 on: Jan 30th, 2008, 7:01pm » |
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Thanks for all the great advice. I am out of remission right now and had one of my worst attacks lst night.
I went out and bought a red bull to see if that works for me tonight.
I know it's coming, just don't know what time.
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George_J
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Re: I feel like I have discovered gold!
« Reply #12 on: Jan 30th, 2008, 11:49pm » |
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Welcome, Chuck.
You've gotten some very good advice thusfar, and I really have nothing to add at this point. Just wanted to say "hello", and welcome to the nuthouse.
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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hotprestwich
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Re: I feel like I have discovered gold!
« Reply #13 on: Jan 31st, 2008, 11:59am » |
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sorry your here, but welcome to ya new home,
ts great when you know your not alone,
i use coffee and 02 they help me live sanely
how long do your cycles last?
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billlmack
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Re: I feel like I have discovered gold!
« Reply #14 on: Jan 31st, 2008, 11:22pm » |
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welcom Clusterhead
your home
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"yeah I get real bad headaches too"
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chuckv
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Re: I feel like I have discovered gold!
« Reply #15 on: Feb 1st, 2008, 10:21am » |
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My Oxygen is coming today!
I'm excited to get to try it.
My cycles usually last about 6 weeks but they have not been consistent lately.
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DennisM1045
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Re: I feel like I have discovered gold!
« Reply #16 on: Feb 1st, 2008, 12:58pm » |
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It one thing consistent about the beast is that he is inconsistent 
Let us know how the O2 goes.
-Dennis-
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imfareware
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Re: I feel like I have discovered gold!
« Reply #17 on: Feb 1st, 2008, 2:44pm » |
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Hello, I hope that you know how to manage the CH's. I've had mine since 86, just about every year to the month they come. Life goes on, they dont last forever!
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PollyPocket
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Re: I feel like I have discovered gold!
« Reply #18 on: Feb 1st, 2008, 4:12pm » |
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Hi Chuck, welcome to the loonybin home. Glad you found us, though sorry you had to.
I'm so happy for you that you got the o2 so quickly- sounds like you found a great neuro. Stick around and you'll be amazed at how much you'll learn (yep, the motherload of info as Richard said) and how much support you and your wife will get here.
Welcome to the family!
Jen
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BarbaraD
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Re: I feel like I have discovered gold!
« Reply #19 on: Feb 2nd, 2008, 5:32pm » |
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Welcome Chuck
O2 is great for aborting as are the energy drinks and coffee. I've been known to try to suck O2 and drink coffee at the same time, but I'm a little weird (and no one will argue that point!)
One other thing and I don't think it's been mentioned yet is Melatonin before bed... 9-15mg before bed. It gets you thru the REM sleep and helps prevent the night hits. Some folks here say it works for them on the first dose -- took me about two weeks before it began to work, but I swear by it now. Rarely get hit at night anymore. It's OTC stuff, but I swear by it.
Sounds like your neuro knows his stuff.
I can't take trex either, but keep Cafergot for those 10s that nothing else gets rid of. It's an old vaso-consitrictor (ergotomine), but doesn't have the side effects that imitrex had (at least for me). You might mention it to your neuro and see what he thinks about that - just as a standby.
We have a great support team here (I think they get off in the corner and talk about us  - ok, I'm joking - what they go thru they're all up for sainthood in my book.) Tell your wife to get on the board with them. Supporters need support also.
And for goodness sakes (and I didn't look at where you live) don't miss an opportunity to MEET another CHer in person. It's something that can't be explained even after you do it. But it is an experience. Afterwards, you'll know you're NOT alone ever again. My son has never understood why I'll jump in the car on a minute's notice to go meet a "stranger" for coffee or dinner. I keep telling him, "I'm not going to meet a stranger, I'm going to meet another CHer." Never met a stranger yet and the funny part is, I've never had any trouble recognizing them in a crowded room either - strange but true. If you get a chance to meet a Cher - don't hesitate - take the opportunity and meet the guy - then you'll understand what I'm saying.
Hugs BD
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chuckv
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Re: I feel like I have discovered gold!
« Reply #20 on: Feb 4th, 2008, 10:19am » |
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Okay, so here's the deal.
I wake up to a really bad attack on Friday night and immediatley jump to my new friend, Oxygen. After about 15 minutes, I am back in bed and resting with no drugs taken!
Unfortunately, the rebound hits about an hour later.
So, shoot the Zomig up my nose and jump back on the O2.
This time, I am headache free in about 10 minutes.
I can't believe I went without the O2 this long.
This has been a lifesaver.
After the Zomig and O2 comination, no rebound and I managed to ride out the rest of the night.
I actually went headache free on Saturday and then had anothe bad one last night. I immediately jumped on the O2 and shot the Zomig. 15 minutes later I am headache free and no rebounds.
Oxygen is my new best friend, well, along with all of you.
Thanks for all the great advice!
Kansas City is a little quieter now without me screaming so long.
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Guiseppi
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Re: I feel like I have discovered gold!
« Reply #21 on: Feb 4th, 2008, 10:23am » |
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That is awesome!!!!!!!!
I'm like you, oxygen alone will result in the headache coming back in about 10-20 minutes. Now I pop a cafergot, and crank up the 02. 02 knocks it down, cafergot keeps him running.
So glad you've got a regimen that works. It's a powerful feeling knowing you can kick his ass when he tries to bring it! Couldn't be happier for you.
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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RichardN
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Re: I feel like I have discovered gold!
« Reply #22 on: Feb 4th, 2008, 8:58pm » |
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Isn't it a great feeling knowing you have at least some control over the bastard?
Be Safe, 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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