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Topic: Diagnosed this week (Read 346 times) |
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Ann9900
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Diagnosed this week
« on: Dec 23rd, 2004, 9:16pm » |
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Although I've been lurking around these boards for a couple of weeks, I wasn't officially diagnosed with cluster headaches until this week. I've suspected them for a while though. I've had migraines for about 10 years (following a somewhat minor car accident). I realized that the clusters were different about 5 years ago. After having a few excruciating days a couple of weeks ago, I decided to head to the dr. She gave me Fiorinal and Imitrex injections (I already have the oral). So, we'll see what happens. Anyway, I'm looking forward to having a place to go where other people understand. (Although I feel my headaches pale in comparison to some of the messages here because of their frequency - 1 to 5 episodes per year that have only lasted 3 days max vs. what some of you are going through). I recently had my boss's boss say "Can't you just take some Tylenol or something?" after telling her I needed to go home because I was in the bathroom throwing up from a migraine. When I went to pick up the prescriptions yesterday, the pharmacy was out of the imitrex injections. The pharmacist said "Well, you know, there is an oral version." I replied saying that I am aware of that and have used it for 7 years, but it didn't touch the last cluster I had. During 1 episode (as I clenched my head, rocking back and forth in bed), I even had my husband ask if I wanted Tylenol. It was a little different story today as I told him I wanted him to learn how to give me the injections in case he needed to. Well, I've rambled enough for now. As I said, I'm glad to have somewhere to go where people truly understand what I'm going through. I don't know how often I'll post, but I'll certainly appreciate the knowledge and comfort I'll gain by reading others' posts.
Happy Holidays to everyone. Let's all hope for pain-free celebrations!
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lionsound
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Re: Diagnosed this week
« Reply #1 on: Dec 23rd, 2004, 11:17pm » |
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Hi Anne!
Welcome. I'm glad you posted to introduce yourself.
Be sure to read , read, read, and gather lots of info. And this place is great for support too. We understand your frustrations. Once an ER DOC offered me a tylenol.
I have migraines and clusters too.
Have you tried Oxygen to abort the clusters?
There's a link to the left about it.
Be well and Pain Free!
-lionsound
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RichardN
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Re: Diagnosed this week
« Reply #2 on: Dec 24th, 2004, 12:46am » |
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Welcome Ann,
Sorry you have to be here, but it's a great place to be if you share our common demon. There's lot's of help/info/sharing here.
I use Verapamil as preventative and 02 as abortive. If the 02 will work for you (best when used at the first sign of shadows or as early-on as you can) you can save the Imetrex for the ones that get out of hand. Am also using melatonin to good benefit I believe.
One thing you'll find about this board, . . . . there's always someone here, someone else doing the "dance" at 2-3 am.
Stick arround,
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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nani
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Re: Diagnosed this week
« Reply #3 on: Dec 24th, 2004, 9:11am » |
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Welcome Ann and I'm sorry you're here.
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Bethany1
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Re: Diagnosed this week
« Reply #4 on: Dec 24th, 2004, 9:28am » |
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Welcome to the Fam Ann---
pf wishes to ya
Beth
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E-Double
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Re: Diagnosed this week
« Reply #5 on: Dec 24th, 2004, 12:53pm » |
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Research Research Research!!!!!!!
Become as knowledgable as you can and always prepare fpr battle whether in or out of cycle.....
Good luck on your journey and welcome to the family.
Best wishes!
E.
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TxBasslady
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Re: Diagnosed this week
« Reply #6 on: Dec 28th, 2004, 3:07am » |
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Welcome.
Best support in the world is here. Some sufferers have more knowledge about CH then their docs.
Usually someone here 24/7. We're just like Motel 6...
"we'll leave the light on for ya." 
Good luck and lots of PF vibes,
Jean
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BackwaterBiomed
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Re: Diagnosed this week
« Reply #7 on: Jan 2nd, 2005, 2:52am » |
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Ann I can't help but notice one staggering similarity between your case in my own. I had a minor concussion 10 years ago, and have had severe migraines ever since. The CH are a new developement.
Who else here has had a closed head injury in the past? Who else suffers from migraines as well?
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Ann9900
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Re: Diagnosed this week
« Reply #8 on: Jan 3rd, 2005, 7:46pm » |
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Thanks to everyone for the well wishes. I look forward to learning more about this lovely condition and how to live with it.
No, I haven't tried oxygen yet. I like the idea of it because it is not a drug. I'm worried about the long term effects of some of these things. I'm also not sure what I'll do when I get pregnant (not trying yet, but hopefully within the next couple of years).
Thanks to some of the advice here, I contacted my insurance company about how much of the imitrex injections they will cover. They told me there isn't a limit, as long as it isn't more than the supply determined by the pharmacy. The pharmacy coded the 2 doses as a 5 day supply, so I can refill it when 70% is used. (I had a hard time getting the insurance company to understand my dilemma of determing 70% of 2!) Basically, I can refill it every 4 days or so - as long as I still have refills from my dr. I've been lucky and haven't had to use it yet, but am carrying it with me in case I get either a cluster or a severe migraine.
Thanks again for all of your help and support.
I hope everyone had happy holidays!
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nani
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Re: Diagnosed this week
« Reply #9 on: Jan 3rd, 2005, 11:50pm » |
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I think it might be good for you to consider filling the Trex prescriptions even if you don't need them. At least for awhile after your cycle ends. There may be a time when you need more than what you're taking now and it can be a real PITA to haggle with pharmacy or insurance co. people. Even if it's expired, it will still work. Just my  -nani
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paul_laurence
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Re: Diagnosed this week
« Reply #10 on: Jan 4th, 2005, 7:49am » |
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good morn all...well about as good as it can be given the circumstances.
my latest cycle started the monday before thanksgiving and has been going strong ever since.
i've wrestled with the beast since my teens, with my worst cycles occuring in my late 20s early 30s. at that time nothing helped, and i tried it all. clusters would last a minimum of 2 hours, with the pain being so sever, i would pass out and wake up with the same headache.
i am 46 now.
my cycles occur about once a year for 8-12 weeks, usually starting during seasonal changes. they have calmed in severity, but as i'm sure many of you feel, your last headache is your worst.
i and the beast duke it out about 2-4 times a night, with the duration lasting anywhere from 15 minutes to 2 hours.
i do the imitrix shots, but i really try to limit them to the most sever pain as i'm so afraid of the rebound effect i experienced 2 years ago when i first tried it.
i don't know whats worse...the headache itself or the dibilitating feeling afterward.....check that...i do know whats worse!!! (hehehehe)
well, i just wanted to introduce myself....I'm Paul Laurence and i feel for each and every one of my fellow sufferers.
but remember...we are stronger than the beast!!!
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vig
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Re: Diagnosed this week
« Reply #11 on: Jan 4th, 2005, 9:34am » |
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welcome welcome welcome
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never, Never, NEVER quit. -Winston Churchill
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Langa
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Re: Diagnosed this week
« Reply #12 on: Jan 4th, 2005, 10:38am » |
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Hi Ann...
Hi Paul...
Welcome!
Langa
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rickyshot
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Re: Diagnosed this week
« Reply #13 on: Jan 4th, 2005, 8:44pm » |
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I am a newbie too with migraines and ch. I had a head injury hit by a truck at 6 years old with a skull fracture on my left side of the head right in back of the ear. My ha's always come from the area the vortex if you will. They started when I was 30. I am 50 now. My poor kids don't know what a normal mother is. Like the above poster the after affects are just as bad as the damed ha. Just before I get a migraine I get depression for no reason at all. I know one is coming. I take so much dam meds that I refuse to take anitdepressants (which I tried in the past with no help at all) just more expense and chemicals in my system. When I don't have a ha or attack I am just fine with no sign of depression at all. and very energetic and fun to be around. Don't let the beast get me Mrs hyde comes out. And y'all know I am not crazy. Hell on earth. ........
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