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Topic: Doc Find?? (Read 901 times) |
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jozee
New Board Newbie
Follow your heart---always.
Posts: 4
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Hi all,
My name is JoAnn and I'm new to the site and frankly, have been obsessed with it. Soooo helpful.
My boyfriend is a CH sufferer for 2 years and he's in the middle of a really bad episode right now. He needs to find a new neurologist and we just don't know how to find one that specializes in Clusters and their treatment. He's been on Prednisone (didnt' work), Amitryptaline (didn't work...just dog tired all day) and now he's taking Indomethacin and it's day 5 on that and no help.
He's tried Red Bull and Kudzo since finding this site 4 days ago and last night he had a Kip 10! So we're frantically trying to find a specialist to help out. Any ideas if there is a way to search the net for an specialist or does anyone out there have one they can recommend in Connecticut??
Thanks for all the good info on here...
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ShaneM
New Board Junior
Will someone pull this out of my eye?
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Re: Doc Find??
« Reply #1 on: Jul 12th, 2006, 8:45pm » |
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JoAnn,
Unfortunatly I don't live in your area so, I don't have a good recommendation for a doc. But I can say that just the fact that you are here posting, helping, searching means alot. There are lots of good links from this site that you will be able to gather information to take to the doc when you do find one. And if he is not happy with the first, best advise is to find one that he does like. It may take a while. With this condition you must be patience in all aspects, from finding a doctor to meds to the freakin' HAs themselves. The beast doesn't go away without roaring real load! I commend you. And good luck in your search. Keep us posted.
Shane
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E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
  
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Re: Doc Find??
« Reply #2 on: Jul 12th, 2006, 8:45pm » |
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Since you are from Connecticut you MUST get to NECH...
New England Center for Headache!!!!!!!!!!!
It is Stamford and THEY WILL HELP HIM!!!!!!!!!!
http://www.headachenech.com/aboutus/
I see Dr. Sheftell but they are all awesome and know their CHit 
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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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jozee
New Board Newbie
Follow your heart---always.
Posts: 4
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Re: Doc Find??
« Reply #3 on: Jul 13th, 2006, 8:20am » |
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Thanks for the info! This site is awesome. We've felt so alone these past two years, everyone comparing these headaches to tension headaches, migraines...no one gets it!
My boyfriend works in Stamford so it doesn't get any better than that!!! Thanks so much,E-DOUBLE, I am calling TODAY, on the double! 
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E-Double
CH.com Alumnus
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Re: Doc Find??
« Reply #4 on: Jul 13th, 2006, 10:09am » |
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on Jul 13th, 2006, 8:20am, jozee wrote:Thanks for the info! This site is awesome. We've felt so alone these past two years, everyone comparing these headaches to tension headaches, migraines...no one gets it!
My boyfriend works in Stamford so it doesn't get any better than that!!! Thanks so much,E-DOUBLE, I am calling TODAY, on the double! |
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MAke sure to tell them CH!!!
You'll get in immediately
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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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JeffB
CH.com Alumnus
New Board Hall of Famer
Wide open till you see God, then brake
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Re: Doc Find??
« Reply #5 on: Jul 13th, 2006, 5:40pm » |
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I started with the same stuff, Indocin,Prednizone,Verap...etc.
Helped control the cycle for me but didn't help the pain. I wish I could help find a nuero out there in gods country for ya so we can get this guy some relief.
Study this site and don't be afraid to ask questions, these are the greatest people and have alot of answers for just abot any question.
Good luck and sorry you had to find this place but glad you did!
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" It's been my experience that people who have no vices have very little virtues."
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jozee
New Board Newbie
Follow your heart---always.
Posts: 4
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Re: Doc Find??
« Reply #6 on: Jul 14th, 2006, 8:13am » |
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E-Double...thanks again.
The first appointment they had was Sept 7th...but they did acknowledge CH and said they'll try to call him before that because they get lots of cancellations.
Kudzo and Indemethicin doesn't seem to be working...unless it shortens them sometimes...last nights was only about 35 mins?
All we do is talk about these things trying to figure out what causes them. We can't seem to find a pattern or why they started. When did you start getting them?? Seems like my boyfriends have gotten worse each time he's in a cycle...?
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E-Double
CH.com Alumnus
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Re: Doc Find??
« Reply #7 on: Jul 14th, 2006, 9:12am » |
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Although I may have had them longer, my first true cycle was in 1994.
I was in college and thought that it was from too much partying.
I began having "cycles" in the spring and in the fall each year only having attacks in the middle of the night.
This was of course due to pollen release and allergy induced migrains  1 of many misdiagnosis.
In MArch 2004 my "here we go again" came and didn't really take hold until May. Then it went heywire and my nightly attacks turned into all day and nmight.WTF!!!!
I got my a$$ to a neurologist who witnessed an attack and diagnosed me on the spot.....popped a zomig zmt in my mouth and w/in 7 minutes I was smiling for the first time in weeks.
I found this place, CH.com in June'04 and began to understand and regain some sanity
I then proceeded to receive half ass care though I finally knew what these horrors were.
I had docotors give up on me and doctors that were unwilling to follow what the research dictated.
I got my rear to NECH in April '05 and they saved me.
It is worth the wait to go there.
They will treat you right and they know clusters!!!!
There are a few of us here that are patients of theirs.
They will never give up and never treat you like a seeker.
They will be aggressive when it is necessary and will hold your hand when necessary.
I came off meds in March ( apersonal choice) and though Dr. Sheftell said that I have got a huge set of balls being a chronic, he also said that he would support any decision and will always be there for me.
What a beautiful man.
They care!
Eric
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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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jozee
New Board Newbie
Follow your heart---always.
Posts: 4
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Re: Doc Find??
« Reply #8 on: Aug 27th, 2006, 6:01pm » |
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Been meaning to post this for several weeks. I'm feeling guilty that I haven't.
Thanks so much to E Double who gave me and my boyfriend the lead to NE headache Center in Stamford CT. All of you sufferers have to go here if you're not getting help.
We went on July 20th...they put my boyfriend on some serious meds and he hasn't had a cluster since. Amazing. Granted, the meds make him feel pretty weird and he's decided to try tapering off this weekend but they didn't patronize him or act like we didnt' know what we were talking about.
Thanks again-you saved him. Hopefully he's at the end of this cycle and we'll see what happens next time but for now we have relief.
Thanks so much...can't tell how much it means to us.
xxoo jo
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Garys_Girl
New Board Veteran
Kill the Beast!
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Posts: 240
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Re: Doc Find??
« Reply #9 on: Aug 28th, 2006, 8:24pm » |
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Jo - hope you're still lurking around.
First of all - soooo glad to hear you found help that helped!!!!!!!!!!!
Mind if I ask - what meds were prescribed? Hubby has just come out of cycle and hasn't seen a neurologist - but was reticent to take the usual pred/verapamil course of action.
Thanks,
Laurie
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____________________________________
Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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lionsound
CH.com Alumnus
New Board Hall of Famer
breathe
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Re: Doc Find??
« Reply #10 on: Aug 28th, 2006, 8:34pm » |
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on Aug 27th, 2006, 6:01pm, jozee wrote:Been meaning to post this for several weeks. I'm feeling guilty that I haven't.
Thanks so much to E Double who gave me and my boyfriend the lead to NE headache Center in Stamford CT. All of you sufferers have to go here if you're not getting help.
We went on July 20th...they put my boyfriend on some serious meds and he hasn't had a cluster since. Amazing. Granted, the meds make him feel pretty weird and he's decided to try tapering off this weekend but they didn't patronize him or act like we didnt' know what we were talking about.
Thanks again-you saved him. Hopefully he's at the end of this cycle and we'll see what happens next time but for now we have relief.
Thanks so much...can't tell how much it means to us.
xxoo jo |
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YAY!!!! 
He got in really fast! I'm so glad it was a good experience. (I go there too)
Many hugs and Pain free times ahead for you both!!!
-lionsound
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| « Last Edit: Aug 28th, 2006, 8:44pm by lionsound » |
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E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
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Posts: 6458
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Re: Doc Find??
« Reply #11 on: Aug 28th, 2006, 9:04pm » |
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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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