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unsolved1
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A cluster guinea pig @ Diamond HA clinic
« on: Sep 21st, 2004, 6:21pm » |
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It's official. I'm going to Chicago to stay at the Diamond Headache Clinic for a Histamine Drip Therapy on Oct. 6th. I just got out the hospital today. Spent the last week trying to keep my BP down enough to get some DHE IV. I've had tons of steriods again and I'm on another fresh taper. Still having trouble with the high BP too.
I've already heard from one person who has tried this and it failed. Diamond claims a 60% success rate at stopping chronic clusters with this therapy. I hope it does me some good...as i'm tired, worn out, bruised up, swelling up, and scarred up (from Pic Lines). I need a break !!
Unsolved 
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no-one
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #1 on: Sep 21st, 2004, 6:34pm » |
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((((((((( UNSOLVED)))))))))
VIBES ON THERE WAY
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"Be who you are and say what you feel...Because those that matter....don't mind....And those that mind....don't matter."
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Kris_in_SJ
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #2 on: Sep 21st, 2004, 8:05pm » |
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My biggest hugs and good vibes are being sent your way right now!
Experimental as it might be, It still sounds better than deep brain surgery. *smile*
Good luck - give us all a full report when done.
Here's to many, many PFDAN!
Kris
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IndianaJohn
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #3 on: Sep 21st, 2004, 8:06pm » |
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Hang in the Mike, hope things work out for you.
John
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Did my brains fall out or is this headache over?
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E-Double
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #4 on: Sep 21st, 2004, 8:12pm » |
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Wishing you relief Mike!!!
good luck with everything 
eric
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Jonny
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #5 on: Sep 21st, 2004, 8:17pm » |
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Hang in there buddy....we are all pulling and rowing for you.
Godspeed
...............................................jonny
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Sean_C
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #6 on: Sep 21st, 2004, 8:25pm » |
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Big vibes comin your way..
Sean.......................
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alleyoop
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #7 on: Sep 21st, 2004, 8:51pm » |
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Mike, here's hoping that this works! If not, think hard about the alternative treatment.
.................................alley 
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Kevin_M
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #8 on: Sep 21st, 2004, 8:54pm » |
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Hang in Mike,
Have Diamond throw youn an OUCH convention, you were PAIN FREE for several days after Nashville!
Good Luck Michael,
Kevin M
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broomhilda
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #9 on: Sep 21st, 2004, 10:26pm » |
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Good luck Mike, loads of vibes coming your way, best wishes for pf times for you....
Andrea
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Suck it up Princess...
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Renee
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #10 on: Sep 21st, 2004, 10:52pm » |
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Michael,
Good luck and PLEASE keep us posted as to the potential success!
Keeping my fingers crossed for ya,
Renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
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synergy
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #11 on: Sep 22nd, 2004, 4:57am » |
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Good luck unsolved - let us know what the results are 
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Tom K
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #12 on: Sep 22nd, 2004, 8:56am » |
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Please do let us know how it goes. My new neuro was a partner with Diamond and is now on his own. Would like to compare...
T
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mitChell
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #13 on: Sep 22nd, 2004, 11:49am » |
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Good luck - hope it works for you 
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pubgirl
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #14 on: Sep 22nd, 2004, 5:23pm » |
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Good luck
Love
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PerryGR
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #15 on: Sep 23rd, 2004, 2:22am » |
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Good luck Unsolved. Hope it gives you the break you're seeking.
PFDAN to all,
Perry.
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Haven't posted in a while so let me re-introduce myself... Male, 25y.o., CCH sufferer for a little bit more than 5 years. Verapamil and Lithium seem to work well at the moment.
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nani
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #16 on: Sep 23rd, 2004, 11:09am » |
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Best of Luck to you!!!  Keep us posted. PFDAN!
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K-9
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #17 on: Sep 24th, 2004, 1:57am » |
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Hey man, I hope this works for you better than it did me. You should at least be relatively pf while in there. Good luck!! I'll be thinking about you from the suburbs of chicago, 1/2 hr away, sending vibes!!
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Woobie
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #18 on: Sep 24th, 2004, 2:08am » |
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Good Luck Michael!!!!!!!!!!!! You derserve a break.
I'm pullin for you!!!!!!!!!
Vibes
tina
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Lizzie2
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #19 on: Sep 24th, 2004, 11:28am » |
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I hope it goes well!! Have you considered IV lidocaine? I did it for 10 days last summer before I had clusters. Still waiting for May so I can go back in and do it again. I do not have any ability to miss school until graduation on May 24, so that's what I'm hoping and waiting for.
Anyhow, just another thought. It's still relatively new as I was only the 2nd person to try it last summer, but they are using it a lot more frequently here now.
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unsolved1
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #20 on: Sep 24th, 2004, 10:44pm » |
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on Sep 24th, 2004, 11:28am, Lizzie2 wrote:Have you considered IV lidocaine? No. It has never been offered, although I do have Lidocaine Nasal Drops.
I did it for 10 days last summer before I had clusters. 
Still waiting for May so I can go back in and do it again.
I do not have any ability to miss school until graduation on May 24, so that's what I'm hoping and waiting for. I hoped for not missing any school for 2+ years ... I can't believe I went that long 'chronically'
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sailpappy
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #21 on: Sep 25th, 2004, 12:03am » |
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 Well I just hope you have more luck with the Histamine drip treatment than I did, I repeated the theraphy at least 4 or 5 times and aside from having a Cluster for 3 hours each time and getting all red in the face, lets just say it failed horribly, and at the prices Diamond Clinic charges, well I would ask my Neuro to do it in his office, it would be a lot cheaper, unless they have changed their fee schedule your looking at around $10,000.00 to be in agony for 3 hours a day for 3 days in a row for each time they give you the treatment!
Good Luck Pappy
Maybe with Seymore Sr gone Junior will be a little less expensive and more compassionate?
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| « Last Edit: Sep 25th, 2004, 12:14am by sailpappy » |
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K-9
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #22 on: Sep 25th, 2004, 5:44am » |
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Hey sailpappy, I was wondering how long ago it was that you did the IV histimine treatment? I was there in '97 and again in '02, it is true that if you take the histimine too quickly it will trigger an attack but they kept monitoring me and getting on me when I tried to run it too fast. It was my feeling that I needed to run it fast in order to build a tolerance to the histimine, but they kept yelling at me so I slowed it down. I guess that makes two of us, one running it fast and getting HA's, and the other of us running it slower and not getting HA's, but the end result is the same, WE BOTH STILL HAVE HA's!!!!! I'm really hoping for a positive report from unsolved. Please let us know how it goes. I've got your dates marked down and I'll be thinking and sending energy!!!
best of luck
chuck
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sailpappy
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #23 on: Sep 25th, 2004, 12:34pm » |
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 Hey Chuck,
It was in 1976,77,and 2 times in 80. the method back then was and IV drip for 3 hours, 3 days in a row.
I pray for Unsolved it works!!! Don't mean to be such a pestimistic Old Fool, just was a collosal waste of time for me! My Doctor did the Histamine treatment on the consultational advise of Dr. Seymore Sr. Having read the post today, well I think the Blood Pressure issue might have a part in this and probibly sould be addressed first as the Histamine treatment will jack the BP up quiet a bit on its own. IMHO Pappy
By the way---Its sure nice to be back home again, even with all the new Brothers and Sisters we have now!
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| « Last Edit: Sep 25th, 2004, 12:37pm by sailpappy » |
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bluesunshine
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Re: A cluster guinea pig @ Diamond HA clinic
« Reply #24 on: Sep 26th, 2004, 12:35am » |
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Let's put an end to it.
LET'S PUT AN END TO IT!
I know you can motive yourself to get to it.
You will do it, man!
you will enjoy and embrasse life again, man!
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