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Topic: Going nuts and need some help, please (Read 326 times) |
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Todd
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Going nuts and need some help, please
« on: Mar 3rd, 2005, 9:49am » |
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Hello.
My name is Todd. I'm 35 years old and live in Rockford IL. I feel like a complete idiot as while i'm not having an attack at the momemt i'm crying as I type this.
this is my 5th round of these lovely things. I just found this website yesterday and like many of the things i've read--the first three rounds were attributed to sinus infections. the last round and this one my doctor has called clusters. I'm not sure I feel any better knowing this is something that is going to be around for life. I haven't been to a neurologist, yet. I have been on predisone for a week now but at a smaller dose than it looks like most are on here 35 at the top end. While it seems i'm tapering off (down to just one hell per day that the relpax is handling) i'm not sure what else to talk to the doctor about.
This is a really retarded question but one thing i've noticed over these cycles is that I don't sneeze. I'm one of those folks that sneezes several times a day when not having these headaches but when they start I don't--does that make any sense?
I've been off work for about 3 weeks now on FMLA (it got really bad 5-6 a day and had 4 ER trips in 8 days)
I've tried emailing soem of the folks listed in this area to see if they reccomended a good neurologist--but any suggestions would be greatly appreciated.
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nani
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Re: Going nuts and need some help, please
« Reply #1 on: Mar 3rd, 2005, 10:02am » |
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Welcome, Todd and I'm sorry you're here. Look here for a list of recommended drs...
http://www.clusterheadaches.org/doctors.htm
Look around the site here and at the OUCH site for treatment info.
Pain free wishes, nani
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lionsound
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Re: Going nuts and need some help, please
« Reply #2 on: Mar 3rd, 2005, 10:22am » |
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Hi Todd,
Are they giving you oxygen (see link on vertical bar on the left) with a non-rebreather mask when you go to the ER? Does it work for you? That's something you can get a script for at home too.
Is the relpax a pill? There are other triptans(same kind of med) like imitrex that come in a nasal spray or injection that may work quicker and be more helpful.
You are doing the right thing in seeking out a good neurologist as your next step.
And about the sneezing....I find I sneeze like crazy with my CH ...sneezing can be neurologically driven...so it wouldn't surprise me at all if yours did the opposite and stopped. Stranger things have happened.
Quote:| I'm not sure I feel any better knowing this is something that is going to be around for life. |
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It may or may not be. Just remember either way the important thing is to live that life.
be well and Pain free,
lionsound
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Todd
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Re: Going nuts and need some help, please
« Reply #3 on: Mar 3rd, 2005, 10:43am » |
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So holding out hope that I don't sneeze makes it a sinus thing probably isn't going to be very productive. How do people handle the depression? I do pretty well for the first 4 to 5 weeks then when the 3 to 5 attacks per day hit I fall apart. It gets pretty dark and then I start wondering if this is worth it.
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nani
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Re: Going nuts and need some help, please
« Reply #4 on: Mar 3rd, 2005, 11:27am » |
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Most of us deal with the depression by coming here. We laugh, we cry, we hug... 
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Bob_Johnson
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Re: Going nuts and need some help, please
« Reply #5 on: Mar 3rd, 2005, 2:13pm » |
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Time to start reading and learning.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Excellent article on current treatments. Good to print out and use as a talking tool with your doc; give him a copy.
Here is a link to read and print and take to your doctor. It describes preventative, transitional, abortive and surgical treatments for CH. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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Todd
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Re: Going nuts and need some help, please
« Reply #6 on: Mar 3rd, 2005, 5:58pm » |
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Thank you to those who replied. I had found the therapy sheet but reread it and took it with me to my doctors appointment today. He switched me to the injectible imitrex and put me on the verapmil to back up the predinsone and he's looking for the right neurologist for me to work with. I think i'm toward the end of this cycle so i'll hopefully have my 2 1/2 to 3 years without them, but will spend that time learning how to be better handle this rather than give in weeks 5-9. I'm 28 hours free here
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