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Smartin Alumnus
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Newbie - First Doc Visit Help
« on: Dec 24th, 2003, 1:09pm »
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First - I cannot express the relief at finding this site.  Thank you to those who make it possible.
Second, please excuse any missuse of terminology.
I am 45 years old and a 25 year vet of CH.  I first discovered my affliction was called CH from a Newsweek article on HA about ten years ago.  The article gave very sketchy details and said that not much was known because there were so very few sufferers.  When I described my pain to the docs and the autumn episodes, they said that I had "sinus headaches."  I also contributed to the confusioin when I told them that the HA's would go away about an hour or so after taking acetomenophen.  My challenge was always that I had several CH's every day and tended to over medicate with the tylenol, 12 to 15 every day for three months plus.  I never realized that the CH beast only visited for an hour or so before leaving on his own accord.
Anyway...I took the survey and scored 100%.  My episodes last from late Aug to late Dec. or early Jan.  Sometimes I will have a short 4 to 6 week episode in the spring, Apr to Jun.  Early in the cycle, I get 3 or 4 CH's a day between 2 and 5 kip.  In the middle of the episode I suffer 4 or 5 CH's in the 6 to 9 Kip range.  The mose severe come between 6 pm and 3 am.  For about a month in the middle of the episode, I have visits that rock me outta bed every night and he stays for about an hour.  I suppose this is all a rehearsal for the things I'm gonna tell my doc.  I have an appointment on Monday the 30th.  Thus my post...I have a few questions that I hope some of you can help me with.
Q1and 1.5...what else should I be telling the doc at my appt?
What shoud I ask?
Q2...what are "shadows"?  Are they those lingering feelings...pressure...tingling...tightness...distorted focus I get in my left eye and on the left side of my face prior to a full visit?  I also feel this way alot on the front end and back end of an episode/cycle.
Q3...whats the difference between an episode and cycle?
Q4...I read a mention about a "bump" on the back of the neck.  I have one and it gets tender during a major attack.  Sometimes it feels like the pain is on a track between my eye/cheek around the head to the bump.  It became absessed once and I had it lanced.  It is about the size of a pea near my spine at the base of my skull.  Does this have anything to do with CH?
Q5...I live in Phoenix and have access to the Barrow Neuro Clinic through my health plan.  I have two names from a person who used to work there, but have not spoken to anyone who has been treated for HA's there.  Has anyone heard anything about Barrow?  It's supposed to be one of the best in the country, but I think they specialize in Oncology and Parkinsons.  I was also referred to a Dr. Drazkowski at the Arizona Mayo Clinic.  They said he was an expert in the field of HA's.  He's not on my plan but may be worth the cost of a visit?  Anyone heard of him?
Thats all for the moment.  Thank you all for the great gobs of info.  I've been reading full throttle for the past week and have printed some stuff to take along with me to my primary care doc on Monday.
Peace this holiday season.
IP Logged

Great is the thing that makes a child dream


Re: Newbie - First Doc Visit Help
« Reply #1 on: Dec 24th, 2003, 1:20pm »
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For starters, you can read the info to the left. Imitrex is BEST of MOST. Use the Imitrex tip. Will save you lots of money.
Shadows are those feeling you get, yes.
Neuro would be recommended. That way you can get the correct O2 you need. Someone will post the info i'm sure.
O2 & Imitrex both abort pretty quick. Lots of info on prevents. None work for me though.
Shrooms help alot of people to break cycles. I haven't tried yet. Next time a cycle starts I will though. This one should be almost over for me. 16 weeks now.
Read Read Read. Current & Past Post. And the O.U.C.H. website. Lots of info.
Strange. Even though we are all different, but yet all the same. You're the first one to post that seems to have cycles the same times as mine.
Blue Meanie
« Last Edit: Dec 24th, 2003, 1:21pm by YOSIMITE » IP Logged


Re: Newbie - First Doc Visit Help
« Reply #2 on: Dec 24th, 2003, 1:23pm »
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Q1 - print off some stuff on the left to take with you.
Q2- yes
Q-4 yes, some call it a "cluster-bump"
Q5 Don't know
Good luck, welcome and wishing you PFNAD.
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Charlie Alumnus
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135447360 135447360   mondocharlie   mondocharlie

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Re: Newbie - First Doc Visit Help
« Reply #3 on: Dec 24th, 2003, 4:42pm »
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Welcome aboard and sorry you had reason to find us.
Your description of CH is a good one. You'll find a lot of info by hitting message board topics and clicking on some of the many buttons at the left as well.  
You're not alone when it comes to shadows. I was episodic but so far as I know, I've never had one. Not to worry, there are others.
I'd bring a lot of printouts from here for your doctor and let him know that what you have has nothing to do with what anyone thinks of as a headache. Tell him that this horror wakes you out of a cold sleep and that you cannot lie down or relax. It should help him help you.
I guess you've been here for a time but here is the link to my technique. It helped me and some others. Give it a shot.
It might be good to print out this one for your MD and family:
[url]"" [/url]
Good luck and let us know how you're doing.
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Re: Newbie - First Doc Visit Help
« Reply #4 on: Dec 25th, 2003, 12:01am »
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Hi Smartin,
Welcome to the board.  And yes.....this is a great place to be if you have CH.  Lots of info, and the support is remarkable!
Unfortunately, alot of folks here have to "educate" their neuros and gp's.  Print all the info you think you need and provide that for your doc.
Hope you find the right combo of meds you need to "tame the beast".
Keep us updated.......
Merry Christmas to you....and wishes for a Happy New Year!
PF vibes,
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