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Topic: Newbie (Read 213 times) |
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DisneyRN
New Board Newbie
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Hi Everyone.....I was asked to come to the Message Board and introduce myself. I've had CH and Migraines combo for about 20 years now. Flashing lights, such as those on Police Cars, School Buses, UPC readers in grocery stores or just the sun hitting the bumper of a car in front of me sets off my headaches. Many times the police have had to call the ambulance to come and get me after I've pulled off the road, blinded by the CH.
Yes, I am an RN and did work at Disney World. I worked in the Ticket and Reservation Center at the Magic Kingdom (by the Monorail), taught dance at the Wild Horse Saloon, Pleasure Island, and did some choreography. Loved, loved loved the job! I live west of Tampa and north of Clearwater, right on the Gulf. I love fishing, water sports, biking. and competiive Country- Ballroom dancing.
I have 2 grown children. A son who lives north of Tampa, and my daughter lives in Nevada. So far neither has had any problems with CH. My father had them, when I was a teenager back in the 70's. So I have known about CH this long.
I started with the migraines's & CH's in the 80's. Stress may have been a trigger, raising 2 small children, both with asthma, 1 with ADHD & dyslexia, working full-time, trying to go to college at night, & going thru a nasty divorce and getting no help from the father. I also developed a flare up of Rheumatoid disease.
I tried Elavil, Sansert, Tegretol, Inderal, Cafergot, Imitrex injections (can't use because the Carotid arteries tighten too much), Zomig (same poblem), Stadol (I get hives). Some ER doc's have given DHE45/w Phenergan which has helped. But, most of the time they give me Toradol, and phenergan. I carry an address book with me explaining my typical symtoms and what to do, as I am unable to think and talk (aphasia).
Oxygen (at 10 liters) has helped, and I am now on a medication called "Neurontin", which I think has helped. Although, it was given to me by the pain management Dr. for back pain. I also have Rhuematoid disease, Raynaud's Phenomen (which the Neurontin also helps). My Primary care Dr. had put me on Fentenyl pain patches for pain. I had less pain with the headaches, but ended up addicted to the the med because it is an Opiate. After being on that drug for 5 yrs or so, I discontinued it last winter. The withdrawal was not easy, but I did it!
I did try to get into several treatment centers. But was rejected because I have a Pacemaker. I had to go to the hospital a few times to get "re-hydrated", and the Dr's there wanted me to go into an outpatient program...Just what I needed, so sick, and having to sit in a circle and listen to "street-addict's" talk about how much they craved drugs.
Hmmmm....that sounds harsh. All I wanted was help to detox, not the whole 10 step progam. Anyways...that's all in the past. And now I am considoring go back to college and teaching Nursing at the college level.
Well, that's my story. Thanks for listening...I'll be watching the message boards.
Bye y'all!
Bethe
Disney_RN@yahoo.com
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LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
 
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Re: Newbie
« Reply #1 on: Mar 29th, 2006, 4:05pm » |
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Hello again Bethe!
Its nice to see you posting and well done for going through the withdrawal.. I feel like I should write that in huge flashing letters because that must have been awful. I'm very impressed you did it and came out the other side, you should be rightly proud of that! 
You've had a lot to deal with, you're obviously a strong person and it's going to be fun having you here and getting to know you better.
All the triptans are going to be a problem for you I would think which is a nuisance but there are other options. Have you ever tried O2? At a flow rate of 15 LPM and used with a non rebreather mask is it quite simply incredible. In my opinion based on my own experiences there is no better faster user-friendly abortive! I can abort in 5-7 minutes using a mask designed specially for CH sufferers called a clustermasx www.clustermasx.com
PFDANs (painfree day's and nights) to you
Helen
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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Bob_Johnson
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Re: Newbie
« Reply #2 on: Mar 29th, 2006, 4:24pm » |
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The most current thinking about treatment, by one of the better headache docs in the U.S.
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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nani
CH.com Alumnus
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Got kudzu?
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Re: Newbie
« Reply #3 on: Mar 29th, 2006, 4:24pm » |
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Welcome, Bethe. I took Neurontin for 5 years. It did help some. I felt it kept the intensity down. The problem was that I kept having to increase the dose. I was chronic and eventually taking 1800 - 2400 mgs a day, with little relief. I also have "light" triggered attacks. It makes living in the "Sunbelt" a real challenge somedays, LOL.
You may want to talk to your dr about a preventative. And listen to Helen about the clustermasx. It's had nothing but rave reviews. Congrats on the detox! 
pain free wishes, nani
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Others may come and go, but MY power is MINE.
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