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Topic: So Happy to have found you all!! (Read 322 times) |
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djsdds
New Board Newbie
CRAZINESS!!
Posts: 7
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So Happy to have found you all!!
« on: Mar 30th, 2004, 10:39am » |
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Re: WELCOME!« Reply #13 on: Mar 29th, 2004, 10:20pm » Quote Modify
Hi!
I guess I'm the newest member. This is the greatest website I've ever seen. When I first started getting clusters I was 19. There were no computers or web for that matter, it was 20 years ago.
I'm a dentist, and it took until I was in dental school to get a correct diagnosis. We had a chronic pain instructer who was shocked that I was a young female with clusters! I'm so special!!
So here I am now, age 38. I have 4 kids, have never had a cluster during pregnancy (no, that's not why I have 4 kids!! LOL) My youngest is 3 now. I would get a cluster after each delivery and this time I've gone over 3 years without any! I prayed to God they were over in my life until March 9th at 2am they hit again!
I'm 20 days into it now and I think it's slowing down. I was waking up every 30 min to suck O2. Last night I only woke up twice! I try to avoid meds but I'm dependent on Oxygen.
O2 works well in the beginning of the cluster, and in the last weeks. NOTHING works in the middle days or weeks. In the past I've used an Ergotamine inhaler. That's like snorting alcohol (which of course, I'd do if it worked). I tried the Imitex inhaler this time which just made me sick!! So instead, I screamed, paced, cried, rocked like a crazy person and when it seemed to be coming down, I prayed the O2 would work next time!
This is like living in Hell!!
PS Hi to French Canada - I'm close to you in VT! 
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thomas
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Re: So Happy to have found you all!!
« Reply #1 on: Mar 30th, 2004, 10:41am » |
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Welcome aboard.
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Superpain
New Board Hall of Famer
GOT O2!?
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Posts: 1351
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Re: So Happy to have found you all!!
« Reply #2 on: Mar 30th, 2004, 11:36am » |
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Welcome!
Can you write your own prescriptions?
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Chris
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buckeyescooter
New Board Veteran
Screw Fear!
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Posts: 123
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Re: So Happy to have found you all!!
« Reply #3 on: Mar 30th, 2004, 12:06pm » |
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Welcome...I'm a new member myself.....There's a lot of great stuff here. I have a 3 year old and a nine month old.....I worry sometimes how I'll handle it if I get blasted when I'm alone with them. Like they say, have a plan.
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Clusterheads are a rare breed.
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Luke63
New Board Hall of Famer
For sale: 1 BIG BARKING HEAD Price: Free
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Posts: 1182
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Re: So Happy to have found you all!!
« Reply #4 on: Mar 30th, 2004, 12:45pm » |
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Welcome !! And keep that O2 handy....  As far as the kds seeing this sort of thing...you guys will be fine if it happens....I'd call it instinct!!! Luke
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I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
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djsdds
New Board Newbie
CRAZINESS!!
Posts: 7
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Re: So Happy to have found you all!!
« Reply #5 on: Mar 30th, 2004, 2:15pm » |
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Hi....well, I can't really write my own Rx legally but I can order as much O2 as I need. I have tanks at work, tanks at home, tanks in my car. I had to drive my son to a swim meet 8 hrs away and he was laughing that mom was driving on "a respirator"!
The bad thing about knowing all pharmacology of the drugs is it scares you out of taking anything and just coping w/ oxygen. I was recently given verapamil but it screws up the electrical conductivity of the heart. When I can abort the pain w/ o2 at night, I don't want to take that stuff. But in the middle of the cluster the O2 stops working and nothing stops the pain. Thats when I wonder if I should just start the drugs!
I haven't seen a neurologist in years. This was the first one and it was only because my husband took me to the ER last week at 2am. I think my behavior scared him. I hate the ER. I got to see "Doogie Howzer" who knew NOTHING about cluster!! How frustrating when they make you wait so long, the pain is gone. Every person asks you "On a scale from one to ten, what is your pain like?" They could never comprehend what a TEN is!! I have 4 kids and childbirth of an 11 pounder with no anesthetic is only a 3 compared to the big bangers!!
So, I'm not sure what my next move is. I'm just praying to be PF sooooon!!!
Thanks for the support!! J 
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xorn
New Board Newbie
This Really SUCKS
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Posts: 8
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Re: So Happy to have found you all!!
« Reply #6 on: Mar 30th, 2004, 3:30pm » |
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I'm new here as well, and am still learning about this myself. I TOTALLY understand what you mean about the imitrex inhaler. It makes me sick as well, but it does help me, and it's a good trade off.
I'm sorry you are here. People here are friendly and knowledgable, and I have been helped by the melatonin advice.
I am sure I've been pacing and rocking with you.
Keep the faith
Xorn....aka.....John
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FZfan
New Board Old Timer
Not Insane
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Posts: 459
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Re: So Happy to have found you all!!
« Reply #7 on: Mar 30th, 2004, 5:54pm » |
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Welcome doc,
If you read a post by me where I mention I hate dentists, please don't take it personal.
Sure sorry you suffer from these. But you sure are right about finding this website. I had the same feeling when I found it.
No relief at all in the middle with o2, huh? I really feel for ya. O2 was my only weapon during my last episode which just ended recently. Although I did pick up a script for Zomig ZMT two days before my cycle ended, I never got around to using it. I know there's someone here, Thomas maybe?, who uses it along with o2 and had good luck. It's one of those tabs that just lay on the tongue and dissolve, certainly easier to take than snorting spray, and is also supposed to get in the blood quick.
That's the only suggestion I have for your mid cycle h/a's, but read everything you can on this site and OUCH, there's lots of things to try even if you go the no med route.
It's good to have a dentist among us. I'm sure some folks will have questions for you concerning clusters and tooth/jaw pain. Not to mention requests for free dental care.
Love Vermont. I spent 5 months there in 1983 working out on the islands of Lake Champlain in the winter. Beautifull country even if it only has two days of summer.
Can ya send me some grade AAA maple syrup?
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There is no such thing as a dirty word. Nor is there a word so powerful, that it's going to send the listener to the lake of fire upon hearing it. - FZ
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echo
CH.com Alumnus
New Board Hall of Famer
Chronic and still alive --- I Win!
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Posts: 4214
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Re: So Happy to have found you all!!
« Reply #8 on: Mar 30th, 2004, 5:55pm » |
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Welcome to the family.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
Proud Dad of a US Marine, and a former Marine turned Police Officer.
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