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Topic: Update (Read 406 times) |
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helpless23
New Board Old Timer
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Hi!
Just here to update you all on Ken's progress. He's been on Verapamil since March 2nd and has been ALMOST pain free since then. He's had a few shadows here and there - but I think it's because of his workload. Spending so much time on the PC. Other than that - he's doing good. No full blown clusters since!
Doc gave him a 6 month supply and wants to take him off in 6 months to see if he's in a remission period or not. Ken said he would do it knowing that if they did come back that the Verapamil would work.
Anyway, just wanted to thank EVERYONE on the board for the love, support and good wishes towards my sweetheart.
Hope all of you are doing well.
Special hugs to 357Mag, ClusterChuck, Thomas and Svenn (oh ok...maybe you too Jonny) 
Much Love,
Toni
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helpless23
New Board Old Timer
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Re: Update
« Reply #1 on: Mar 29th, 2004, 6:18am » |
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Just realized that I must have double posted on this already - because of ALL of the replies! 
Sorry
Toni
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Pegase
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Hit the Road Jack...
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Re: Update
« Reply #2 on: Mar 29th, 2004, 10:36am » |
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Verapamil seems to have the same effect on me... I started on march 9 and i'm having only HA k5-6 once in a while...
Pegase
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fubar
CH.com Alumnus
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Re: Update
« Reply #3 on: Mar 29th, 2004, 10:47am » |
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Toni,
I'm glad the Verapamil is working for Ken. Verapamil + Lithium was the only thing that worked for a long time with me. Interestingly, no matter how much verapamil the doctor had me taking, it never affected my blood pressure, not even a little bit. I was on 720mg a day for months. No matter...
When I did stop the Verapamil (and Lith) the headaches came back with a vengeance.
-Fu
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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tiredofclusters
New Board Newbie
born to live, not to hurt
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Re: Update
« Reply #4 on: Mar 29th, 2004, 10:57am » |
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Toni,
That is very good news. Hope they stay away and never come back. HOPESSSSSSSS. 
Neal
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thomas
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Great news, I'm glad he is doing well, All my best to both of you.
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bobkip
New Board Old Timer
I love YaBB 1G - SP1!
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Re: Update
« Reply #6 on: Mar 29th, 2004, 3:06pm » |
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Glad to hear verap is working. Hope it continues.
Kip
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Tiannia
New Board Hall of Famer
Life does not apologies......
 
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Re: Update
« Reply #7 on: Mar 29th, 2004, 3:10pm » |
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Glad it worked for him. Just be careful coming off the Verap. I know that even people who do not show any signs of it effecting their BP or not, that stopping to quickly can really mess with you.
Hope Ken stays PF
-Tia
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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broomhilda
CH.com Alumnus
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Ride it!
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Re: Update
« Reply #8 on: Mar 29th, 2004, 3:41pm » |
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Hi Toni, great news! I am so glad for you both! 
Congrats and heres to many many days weeks, months etc pf!!!!!!!
Andrea
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Suck it up Princess...
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helpless23
New Board Old Timer
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Posts: 269
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Re: Update
« Reply #9 on: Mar 29th, 2004, 4:51pm » |
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Thanks all!
What a relief. I'm just thankful that we found a Dr. who actually KNOWS something about CH...quite a bit in fact...instead of someone insisting that it's migraines, sinus infections and TMJ. But you guys all know the routine.
I've heard a lot of stuff about the Verapamil and so far, so good. I bought a BP machine and his BP has been perfect! So fingers crossed there.
I will keep an eye on him when and if he goes off of it in 6 months. He doesn't HAVE to if he doesn't want to, the Dr. just wants to see if he's in remission or not ya know?
Thanks for all of the helpful information and thoughtful wishes. I will pass it onto Ken. He's been working so much lately, he hasn't even gotten a chance to get on here to read! I keep telling him that you guys are a WONDERFUL bunch of people and that I'm growing to close to a lot of you! It's like a family here. But I guess when work calls......
Oh well!
Thanks again everyone!
PFDAN's to all of you too!
Much Love,
Toni
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