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Topic: Triple Vibes Needed (Read 485 times) |
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Lizzie2
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Triple Vibes Needed
« on: Jan 18th, 2004, 3:31am » |
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So we really need some vibes coming three ways here. Donna D, Athos12, and I have been getting hit really hard lately. We would really appreciate all the vibes ya got to send us! Thanks bunches!
~Lizzie (And Donna D and Athos12) 
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bothofus
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It's got to get better !
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Re: Triple Vibes Needed
« Reply #1 on: Jan 18th, 2004, 9:23am » |
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You've got some PF Vibes coming ya'lls way from me in Texas ! It's got to get better !
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Tara Ann
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Re: Triple Vibes Needed
« Reply #2 on: Jan 18th, 2004, 9:29am » |
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Awww so sorry to hear this the three of you! Hang in there, Clusterheads send the best vibes in the UNIVERSE! Lotsa PF kick the beast in the ass vibes coming from New Hampshire!
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jadedgazer
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Re: Triple Vibes Needed
« Reply #3 on: Jan 18th, 2004, 2:09pm » |
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PF vibes headed to you from Oklahoma! Hang in there! My heart goes out to you. Wish there was more I could do as you have been such a great support to me.
Y'all are in my thoughts and prayers during this tough time!
Jackie S
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Jackie S.
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Lizzie2
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Re: Triple Vibes Needed
« Reply #5 on: Jan 18th, 2004, 6:27pm » |
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Thanks so much for the vibes all!! Been a little rough lately! Plus all with all this darn cold weather, I've gotten a cold...  HOWEVER, I'm not giving up.  I've gone through a few O2 tanks...thank goodness for O2.
I've got my follow up neuro appointment this Wednesday for my post-hospital stay. He will be monitoring and adjusting things as needed based on how things are going. I'll have to give an update after that appointment. I'm interested to see what his thoughts are.
Athos will be posting his update, and I'll post something for Donna if she doesn't soon!
I love my clusterbuddies, but it's at times like this that I realize just how wonderful you all are!! Thanks!!
Hugz, Lizzie
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BlueMeanie
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PF VIBES
PF VIBES
PF VIBES
To each & every one of you.
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TxBasslady
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Re: Triple Vibes Needed
« Reply #7 on: Jan 19th, 2004, 12:36am » |
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Sending lots of triple vibes...........
Sorry you 3 are having such a rough time 
Hang in there.........we're here for you if you need us.
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
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I adopted a Vietnam POW/MIA from El Paso, Texas! 
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athos
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Re: Triple Vibes Needed
« Reply #8 on: Jan 19th, 2004, 1:32am » |
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Thanks guys you are great.
I have another follow up as well.... getting discouraged with the medical community as a whole, but this guy at least cares.... His name is Mohamud Kazi... probably the most interested and caring neuro that I have found outside of the Mayo Clinc....
this week was not as bad as last... hope to keep up the trend.
athos
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TxBasslady
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Re: Triple Vibes Needed
« Reply #9 on: Jan 19th, 2004, 1:45am » |
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Athos,
Glad to hear that things are a little better. 
Hang in there, sweetie......
PF vibes,
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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Ree
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Re: Triple Vibes Needed
« Reply #10 on: Jan 19th, 2004, 6:13pm » |
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Today I say a prayer for all of you>>>
Lord~~ Shine on our Ch friends with compassion,
Help them through these painful times. In His name...
Amen
(at the Lord and His part fill in the blank with the God of your choice.............. sure makes life in America easy if we keep it general)
Love you guys................ ree
oops sorry thanks Grant LOL sorry guys even writers screw up......................
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| « Last Edit: Jan 20th, 2004, 11:00pm by Ree » |
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Proud Mom to US ARMY Kiowa OH58 PILOT~CWO2 SCOTT Hawaii, & USMC Vet~Now POLICE OFFICER SEAN, Citizen of the Month~ Breezy~ Nana 4 Matt/Mike&Aya, MIL To Shino Wife to Dave HI BILL!http://www.myspace.com/dungareespocket http://www.prohawaiian.com
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Charlie
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Re: Triple Vibes Needed
« Reply #11 on: Jan 19th, 2004, 6:30pm » |
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Rats. You never get a break......
Charlie
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jonny
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Three times vibes on the way
....................jonny
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Donna_D.
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Re: Triple Vibes Needed
« Reply #13 on: Jan 19th, 2004, 6:48pm » |
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I wondered why my couch was vibrating! Must have been all the cool vibes sent my way. Thanks for the kind words from everyone.
I'm really not a "whiner" but for those of you who have been asking....
I have been getting hit since Christmas and it has now become apparant that what I thought were "stray hits" is now really being "back in cycle" with intensity and frequency growing every day. Early, too. Wasn't due til April.....
Been down with back problems ( a big THANK YOU going out to the anesthesist who screwed me up for life when I had my last kid by sticking me in the spine no less than 15 times causing nerve damage). I have found that without a doubt, lying flat on your back and CH do NOT mix well.
Thanks Lizzie for posting. I do believe it does help knowing there are others out there who do care.
PFDAN to all.
Donna D
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Woobie
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Re: Triple Vibes Needed
« Reply #14 on: Jan 20th, 2004, 8:41pm » |
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Late again....
Vibes to all three of ya! Hope things get better!
tina 
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Ree
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Re: Triple Vibes Needed
« Reply #15 on: Jan 20th, 2004, 11:02pm » |
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Ok Im a doofus............. I meant Painful times not Pain free times in the post although we need prayers allllllllll the time.................................. sorry
prayers to everyone all around..........and that side of the bar too.............. Im rich in spirit... Love to you ~~~Reespirit~~~
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Proud Mom to US ARMY Kiowa OH58 PILOT~CWO2 SCOTT Hawaii, & USMC Vet~Now POLICE OFFICER SEAN, Citizen of the Month~ Breezy~ Nana 4 Matt/Mike&Aya, MIL To Shino Wife to Dave HI BILL!http://www.myspace.com/dungareespockethttp://www.prohawaiian.com
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Lizzie2
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Re: Triple Vibes Needed
« Reply #16 on: Jan 21st, 2004, 2:15pm » |
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So I had my neuro appt today, and I think it is time to go neuro shopping or else just go it on my own. I'm angry for now, but I guess it'll pass...why I never get angry when I'm IN the office, I'll never know. Here's what he did:
As a preventive for clusters...37.5mg of thorazine a night (says this is an old treatment and works well for some of his tougher cluster pts....for me, i think this will be crap and i won't be making any of my classes anymore because thorazine is the drug from hell)
Upped verapamil to 980 a day...ok
Told me for my choir tours, no abortive besides O2 in the freaking huge e tanks which I can't take with me. He said use my DHE...right...DHE several times a night..for several days on end...that's a good one. So I think I will have to stop touring with my choir.
Guess that was about it....we went back and forth about thorazine having long term negative effects....and also about another abortive besides O2. Or at least another tank size! Well my opinions made no difference, but at least I stated them.
I'm dumping my topamax on my own. I still have many questions unanswered. I'm supposed to go back in a month...Right...hopefully I'll find someone new before then. Anybody know of anyone good in the Philly area? I'll even travel a LITTLE bit...I'm in school so I can't travel a whole lot, but I'm willing to go a little distance! I have freaking HAD it with that place.
I'm sorry to vent and sound angry....I am angry at them. I feel they don't know what in hell they are doing. I have multiple headache conditions and right now they are perpetually getting worse by these types of treatments. So if nothing else, then I'll just either go it alone or go back to my family doc and try working with him. ARRRRRRGGGGGGGGGGG
OK...off to the eye doctor now to at least get a new pair of contacts so I can see!! :-D Thanks for listening to my rant.
Hugz, Lizzie
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thomas
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VIbes x3
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Hirvimaki
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Re: Triple Vibes Needed
« Reply #18 on: Jan 21st, 2004, 3:53pm » |
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Vibes, vibes and even MORE VIBES! And a little New Mexico sunshine thrown in for good measure!
Hirvimaki
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Doll
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Re: Triple Vibes Needed
« Reply #19 on: Jan 22nd, 2004, 11:29am » |
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It’s said we’re never given more than we can handle…..
Donna D, Lizzie and Athos12, perhaps this is hard to believe.
Being a non-CH sufferer, it’s hard for me to really imagine what it is you have to handle, how you cope, how you manage to smile another day….
But I do know, that in the midst of all the pain, there is always hope. Keep that hope.
For it will continue to provide you with the strength you need to endure.
You are so much stronger than you think. Your courage is phenomenal.
With everything within me, I send good well wishes and vibes to you.
Doll
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jonny
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Typing in "Word"? 
........................jonny
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amen
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Re: Triple Vibes Needed
« Reply #21 on: Jan 22nd, 2004, 5:59pm » |
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PRAYERS AND VIBES COMING YOUR WAY FROM BALMY MICHIGAN WHERE IT IS A BALMY 6 DEGREES, -11 WITH THE WINDCHILL
Man....I am so glad that cold isn't a trigger for me!
Hope you get relief soon  x's 3!!!!!
Andrea
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Doll
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Re: Triple Vibes Needed
« Reply #22 on: Jan 23rd, 2004, 2:41pm » |
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on Jan 22nd, 2004, 5:00pm, jonny wrote:Typing in "Word"?
........................jonny |
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Thanks Jonny, I'll remember that.
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ZAIRA
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Re: Triple Vibes Needed
« Reply #23 on: Jan 23rd, 2004, 2:50pm » |
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I’m thiking  .... Why do we have to suffer this stupid thing? Well, I don’t have an answer for that, I only know that someday we’ll beat this . Until than, Lizzie, Athos, Donna and for all of you out there suffering, know you are in my thoughts. Vibes, Zaira 
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Love yourself, Love others, Love often, Forever!
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