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envirodefender
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Kinda new to the board
« on: Mar 1st, 2007, 11:51pm » |
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Hi, I am going to a new clinic tomorrow. 8 years ago I was diagnosed with a "rare" form of clusters that was Chronic but with episodic episodes within the chronic cycle. I also suffer from migraines, although I must say that those are a welcome relief. 2 years prior to being diagnosed with clusters, I was at a neuro clinic , where I was put on 19 different meds in that 2 year period. Once I got to the specialty clinic and was diagnosed they tried several different "cocktails" none of which worked. I eventually stopped going due to the cost of treatment and meds. However, recently I had to see my Interest because the only thing that helped at all (Excedrin Migraine) has now put a hole in my stomach. It is going to cost me over $400 just to walk in the door of this place. As near as I can tell, nothing has changed as far as meds. Though it does seem like I am less of a freak than they orginaly thought back then. Can anyone give me a reason to spend the money on going to this place? Or am I just wasting more $. I am in the pacing, banging mode, again, so I'm up for any advice.
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"Life shrinks or expands in proportion to one's courage"
Cake or Death?
Uh, cake please.
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Lobster
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Re: Kinda new to the board
« Reply #1 on: Mar 2nd, 2007, 12:27am » |
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Heya ED...
What kinds of meds did you try?
Keep in mind... we have Preventatives and Abortives... the first to keep us from going into cycle, the latter to kill the hits.
Safest abortive for many of us...
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Some pretty good info right here too mate.
http://www.brightok.net/~mnjday/chtherapy.pdf
If you need an abort NOW, read some of the 'Red Bull' threads. Do not laugh... it is quite effective for some!
Not to be a putz or anything, but were you saying that Excedrin Migraine worked for your clusters? I ask because if that is the case, practically everyone here would say that you might not have clusters. Pain killers, all the way up through Oxycontin, tend to be largely ineffective against CH.
Welcome back...
Lobster
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| « Last Edit: Mar 2nd, 2007, 1:27am by Lobster » |
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Rock beats Scissors.
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MathenyMan
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Re: Kinda new to the board
« Reply #2 on: Mar 2nd, 2007, 6:13am » |
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lol. Honestly, even after I was diagnosed with clusters I used Exedrine Migraine. This is partially due to my lack of knowledge on the subject, desperation, and eventually habit. Even though my doctors knew I had clusters, because of my age and other reasons a lot of medicines weren't available to me or not in high enough dosage. I've had clusters since I was in about the 3rd grade and JUST got oxygen last week for the first time. Now that I know there ARE long term effects I wont be using it anymore, but it was always just another part of my cocktail. Plus as I'm sure you guys/gals would agree when you get a headache, particularly when the beast is right there you'd be willing to try anything. Holes though? Eww...(throws away empty exedrine bottle). I think back to many times when I've been in a bad day of a cycle and thought to myself at like 11:00 P.M. wow...I've only eaten pills today. The headaches have been so bad I haven't been able to get any food yet. After what you just wrote, retrospect feels like its drilling a hole in my stomach as we speak. lol. Well, its 3:12 A.M. here and this is around the time the beast usually stops by. Wish me luck guys. Talk to you soon
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What does it feel like? Let me think...Have you ever had something try and eat its way out of your brain? Me either, but I'd imagine it feels something like a CH.
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BB
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Re: Kinda new to the board
« Reply #3 on: Mar 3rd, 2007, 3:55pm » |
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Hi Beth
How are you going ? Hope everything is good 
Annette
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envirodefender
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Re: Kinda new to the board
« Reply #4 on: Mar 5th, 2007, 1:25pm » |
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Hi Anette. Not so good, sad to say. I had to reschedule my appointment at the Michigan Heads Pain and Neuro Institute Friday because I couldn't even drive.  How ironic is that? I'm to go tomorrow. I really hope they have some new in for me. I'll let you know. Wish me luck!
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"Life shrinks or expands in proportion to one's courage"
Cake or Death?
Uh, cake please.
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envirodefender
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Re: Kinda new to the board
« Reply #5 on: Mar 5th, 2007, 1:32pm » |
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Lobster, I've been on so many I've lost trsck. The last cocktail was O2, verapimil, elavil, midrin, indocin, and meletonin. The o2 helped some.
Mathenyman, I know, I knew that would eventually happen with the Excedrin too, but as you say, whatever it takes to ward of the beast. It doesn't stop it but it dulled it enough for a few hours so I could keep working. BTW, I love your description about something eating it's way out of your brain!
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"Life shrinks or expands in proportion to one's courage"
Cake or Death?
Uh, cake please.
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lionsound
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Re: Kinda new to the board
« Reply #6 on: Mar 5th, 2007, 1:45pm » |
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Is the place you're talking abut going to MHNI?
http://www.mhni.com
I think it will be worth your trip and $$ if it is. I have never been there, but was considering it for inpatient care at one point.
Dr. Rozen,who is there, is a cluster headache specialist.
I get clusters, migraines too and a bunch of other HA types.
Be well and PF!
-lionsound
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envirodefender
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Re: Kinda new to the board
« Reply #7 on: Mar 5th, 2007, 2:09pm » |
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lionsound, yes, that's the place. It has a great rep and I was there five years ago. I'm lucky enough to live relatively close to it. With any luck they'll have some new ideas after all this time.
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"Life shrinks or expands in proportion to one's courage"
Cake or Death?
Uh, cake please.
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LeLimey
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Re: Kinda new to the board
« Reply #8 on: Mar 5th, 2007, 3:30pm » |
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That last cocktail you were on sounds more like it had the potential to cause HA's rather than cure them
Good luck at MHNI, let us know how you get on please as its good info for everyone else here! Good luck, I hope you find your silver bullet soon
Helen
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BB
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Re: Kinda new to the board
« Reply #9 on: Mar 6th, 2007, 7:19am » |
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Hi Beth, sorry to hear you missed the first appointment. How did it go in the end ? Was it satisfactory ?
Thinking and praying for you.
Annette
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