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Topic: Would you like Mayo with that??? (Read 367 times) |
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kimmeesue
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Would you like Mayo with that???
« on: Sep 10th, 2005, 8:16pm » |
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I said "screw it" with my neuro and went back to my PC. He changed me to Depakote as a temporary attempt and is scheduling me at the Mayo clinic. I checked their website and it looked like "the same ol', same ol'".
Anybody have personal experience.? Have thrown away enough money as it is, don't need another expensive experiment. Do they do lobotomies?
Thanks, everyone for always having such sincere input. Don't know what I would do without all of you.
Kim
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E-Double
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Re: Would you like Mayo with that???
« Reply #1 on: Sep 11th, 2005, 9:13am » |
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Have ya taken the cluster quiz? 
Just kidding.....Smile though it is hard!!!
Though you have posted what you have tried, could ya do so again.
Do you have all the info that some of the crew and I will cut and paste to everyone?
Will your PC take the research into consideration and let you educate him and work together?
Consider alternative treatments?
Want a hug?
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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nani
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Re: Would you like Mayo with that???
« Reply #2 on: Sep 11th, 2005, 10:49am » |
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on Sep 11th, 2005, 9:13am, E-Double wrote:
Consider alternative treatments?
Want a hug?
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What he said. Really. 
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sandie99
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Re: Would you like Mayo with that???
« Reply #3 on: Sep 11th, 2005, 11:29am » |
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Kim,
you'll find a treatment which works for you, I promise. It might take some time (when neuros will tell their ch patients this?!), but you WILL find it. 
Believe or not, but ice cream once stopped one of my hits! And I didn't get anymore attacks on that day.
I can't recall the flavour, it worked once, but it's worth giving a shot if you have some ice cream at the freezer when the attack starts... Who knows?
Good luck! And always keep your ch.com family posted, okay???
Hugs & PFdays,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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kimmeesue
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Re: Would you like Mayo with that???
« Reply #4 on: Sep 12th, 2005, 1:02pm » |
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on Sep 11th, 2005, 9:13am, E-Double wrote:Have ya taken the cluster quiz?
Cluster Quiz??? Is that what this site is about? I thought it was for CUSTARDheads. YUM,YUM!
Though you have posted what you have tried, could ya do so again.
Just about everything legal . All of the triptans, topamax, Keppra, Lithium, Melatonin.
Do you have all the info that some of the crew and I will cut and paste to everyone?
Oh, yeah, and then some.
Will your PC take the research into consideration and let you educate him and work together?
He is wonderful. At my appointment Friday he was almost in tears feeling helpless. That is why he suggested the Mayo clinic because he has already referred me to the only two reasonably local neuros and neither knows squat about clusters but won't admit it.
Consider alternative treatments?
Afraid of them due to other health issues and meds.
Want a hug?
Always!!!! |
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E-Double
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Re: Would you like Mayo with that???
« Reply #5 on: Sep 12th, 2005, 5:33pm » |
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What about verapamil?
Read up on Zyprexa as an abortive.
I use it as well as another here and I'll push that bad boy since for me it works as quick as imitrex injections without the hangover!
http://www.headachedrugs.com/archives/olanzapine.html
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Kris_in_SJ
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Re: Would you like Mayo with that???
« Reply #6 on: Sep 12th, 2005, 7:29pm » |
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My heart is going out to you, sweetie.
Everyone I know who has gone to Mayo has had a great experience. However ... a very, very expensive experience. A great experience with many caring specialists doesn't necessarily mean you'll come away with a treatment that will serve you long-term.
It's a hard call. I think it might be worth your while to investigate neurologists at large city teaching hospitals that might be within driving distance of where you live. Somewhere out there is a combo treatment that will work for you - don't give up!
Hugs,
Kris
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lionsound
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Re: Would you like Mayo with that???
« Reply #7 on: Sep 12th, 2005, 8:17pm » |
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Kim,
I hope you pick going to stay with your daughter-in-law as a treatment option too!!
I'm glad your GP is on your side. I don't know much about the Mayo Clinic..where is it? Do they specialize in headache only? If it involves travel maybe traveling to a good doctor or HA center might be just as worth it. I go to New England Center for Headache in CT which is a five hour drive for me.....and worth every minute and penny I spend. Some people do fly in for appts there(some from this board I believe).NECH is not an inpatient place but will recommend one if they feel it's needed.
Keep yourself informed too.....it may turn out that you can work with your GP just fine.
PLease take care of you!
PF's,
Rori
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kimmeesue
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Re: Would you like Mayo with that???
« Reply #8 on: Sep 12th, 2005, 8:41pm » |
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Perhaps it's all in my head (pun intended) but tonight was the first time pain medicine has worked in I don't know how long. I only have rudimentary understanding of how Depakote works and can't imagine it has reached anywhere near a therapeutic level, but I refuse to look a gift horse in the mouth. I had bad shadows all day and felt the beast ready to pounce, thought what the hell and popped a couple of fiorinal which is usually the same as drinking kool-aid. An hour later not even a glimmer of a shadow.
As for alternatives...I have lupus and am diabetic and my doctor won't sign off on them.
As for Verap., been there, done that...forgot to add it to my list.
Living in hte middle of Kansas my options are limited. The only teaching hospital is in Kansas City and isn't particularly known for treating headaches. The Mayo clinic in Minn. is like a 14 hour trip by car. SO, who knows. Maybe the Depakote is the answer finally.
Thanks everyone.
And, Rori, my d-i-l is coming to me. Woo-hoo.
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gore2424
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Re: Would you like Mayo with that???
« Reply #9 on: Sep 24th, 2005, 8:25pm » |
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Hello Terry here in Davenport Iowa I have been chronic since Nov 1999 after trying 67 different meds in many combos since 1996 plus 3-8 times a month trips to ER. Sleep study done and every 3 months 3-4 days in hospital for a DHE and pain med drip treatments. I went up to Mayo clinic in Rochester Minn. in Jan. 2002 to talk to a DR about having the gamma knife done for relief of these clusters. He and the others all said that was not the way to go because not much success rate BUT he had done 5 trigeminal rhizotomy with 3 no pain for over 5 years and one with minor h/a now and one didnt help at all so after a few months of checking putor and talking with wifey and family I decided to have it done. I didnt think I would get any relief from any more meds that were out there at the time. So in May 2002 I had the operation. I had insurance that payed for all but $1,600.00 and was off work for 7 weeks (sucked on the pay they gave me at work) and only up there 5 days in hospital. So after operation without a H/A I was myself again (hardest part about the right side of my face being numb for rest of my life was learning how to eat without bitting the inside of my cheek and right side of my tongue) Plus my right eye needed drops into it every 1-3 hours to keep dirt out cause you wont feel it and once did get an eye infection that after 3 weeks they had to sew eyelid shut to get it better. BUT after almost 4 months had gone by I got a cluster headache that just almost made me do myself in they were back in full force. I was in deep depression almost lost my job and life BUT I got lucky and found a neuro that got me on the right meds (I wear a duregesic 75 fentnyl pain patch and take 3 anti depression meds and a panic attack med and even have a sleeping pill that has keept me alive ) I have been seeing this neuro since Oct 2002 and I truely believe if I didnt get the relief I have now I would not be writting this. I have had some really bad days and nights since then but the neuro also gave me 14 per month of 30mg morphine pills for the bad times. So in closing I myself if had the chance wouldnt of had the operation done if only I could go back in time but cant so life goes on for me. Terry
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what the hamsalad was that ¿?¿
I said your hair looks nice Ü
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kimmeesue
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Re: Would you like Mayo with that???
« Reply #10 on: Sep 25th, 2005, 10:59pm » |
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Wow, Terry, what a story. I had about decided going to Mayo wasn't the answer, at least not at this point. And if all they are going to offer is surgery, I think I will pass.
I'm hoping the Depakote continues to abate the HA as I have had only one in a week. That I can handle.
Sorry you have had such a rough time of it.
Thanks for the info.
Kim
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If I wasn't doing this I'd probably be doing something else.
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