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Jerry_M
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New to MB HELP
« on: Jul 21st, 2007, 4:38pm » |
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Hi my name is Jerry I’m a 52 year male I’m new to the MB (actually I’m new to any MB
as I have never posted anywhere before) but not to CH. I had my first attacks in Sept. 02,
I had just come back from a week hiking trip over 11,000 ft. in Colorado (I live in
Florida) 3 days later these terrible intense HC’s started, I didn’t know what was wrong
thought it could have been an altitude thing, but after my 3 or 4th attack my girlfriend
said enough this isn’t normal and dragged me into the ER. They gave me CT scan found
nothing and agreed it was probable from the altitude. A few days later (still getting hit 2-3
times a day) a friend of friend etc. mentioned CH and I found your web-site (been lurking
and reading ever since) I saw that I had every sympton listed, and basically was able to
diagnose myself from your site (thank God) and found a local Neruo who sent me for a
MRA found nothing and agreed I had CH. He put me on a pregnesone taper and I believe
180 mg 0f verapamil, when the taper was done and the HC started returning he upped the
Verp. to 360mg and it seemed to do the job except for the occasional breakthrough. that
episode lasted aprox 2 months with another month tapering off the meds. In Nov. 04 I
was sent for a heart tilt test and they gave me nitro as part of the test which I believe sent
me into another CH episode this time did the preg. taper started verp. at 360mg wasn’t
working bumped up to 480mg. again seemed to work except for a few breakthrough’s a
week, this episode also lasted about 2 months. In the beginning of May this year I felt an
episode starting with shadowing ( I have been under a great deal of stress with my brother
at this minute having a bone marrow transplant for leukemia, after having a round of
chemo before which sent him into septic shock and 4 week coma in the ICU that we were
told he probaly would’nt wake up from.
I decided to try the alternate therapy which is spoken of frequently on this site and
clusterbusters. I did a 1/2 dose hopping it would stop the shadows which were getting
much stronger at this point, but instead I found that it had changed the routine of my CH
in that a CH would always start in my nose then my eye, then the stabbing ice pick in the
temple, after the dose my CH now starts at my temple goes to my eye and then my nose (I
think the nose pain is the worst this time around). When that didn’t’t work 5 days later I
tried a 1/4 dose this time the stabbing pain in my temple got longer and deeper if you
know what I mean. I finally decided to give up the alternate therapy and started my preg
taper while starting verp @ 480mg. again after the taper was getting hit alot upped the
verp to 540mg, after a week still getting hit alot went back to the Neruo who didn’t want
me on any higher dose of Verp. but added 750 mg Depakote er to the mix, I had also
added 9mg melatonin after reading the latest medical report listed on the site. I am now 2
1/2 months into this getting hit hard and often, I have discovered imitrx injections this
time ( I call it the off switch) but you can’t take nor can you afford to take a shot for every
attack. What is starting to drive me crazy is that twice now I felt I was out of this episode
having first three days completely pain free and feeling clear, only to get hit again and go
for another 2 weeks getting hit 2-3 times a day, to the second time with 4 pain free and
clear days, then just yesterday hit at 5pm & 11:30pm and today at 12 noon. I do use 02
but find that it just delays the attacks and doesn’t stop them. I’m worried I might be going
chronic (don’t know if I could live with that) and wondering if anybody has any
suggestions that might help. (Sorry for the length of this post but I wanted you to have the
details) Any help or information will be greatly appreciated.
Jerry M wishing PF days & Nights to all
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Guiseppi
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Re: New to MB HELP
« Reply #1 on: Jul 21st, 2007, 6:40pm » |
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Actaully a great, thorough first post. You are right about the nitro. I've read a lot of stuff about nitro being used to start an attack so a doc can see it!
Your neuro sounds very up on CH treatments, consider yourself a very lucky man. Many struggle thru 10 years of misdiagnosis before getting a decent doctor!
Oxygen works great for me, but like you, if I use only 02, the head ache comes back within 15-20 minutes of shutting it off. Now I take 1-2 oral cafergot when I start the oxygen. 02 kills it, cafergot buys me up to 12 hours of off time. Cafergot is ergotamine and caffeine, an old school ch med that in combo with 02 does wonders for me.
I can't do alternative cuz I'm a cop and I have to pea test so not an option. I tried verapamil many years ago but it didn't work for me. My prevent is lithium, at 1200 mg a day, starting with a pred taper for 2 weeks while I wait for the lithium to kick in.
Your neuro sounds really dialed in. Run the cafergot by him see what he thinks, works well for me. And let us know how it all works out. Welcome to the board, you'll find some of the strongest, most beautiful people on the planet here!!!
Guiseppi
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Jerry_M
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Re: New to MB HELP
« Reply #2 on: Jul 21st, 2007, 7:23pm » |
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Guiseppi,
Thanks for the reply, hope I wasn't to informative in regards to your chosen profession HA HA ( I hope) but yea, my neru is a pretty good guy, but will only go so far, I think I'm his first CH. Speaking of which, you are the first other person with CH that I have ever spoken to. You know I have a million questions, but I will only ask one for now, how are you dealing with the lithum, I don't know why, but I've always been scared of lithum, I understand that thats probable my next route.
Jerry
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Jerry_M
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Re: New to MB HELP
« Reply #3 on: Jul 21st, 2007, 8:02pm » |
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Guiseppi,
Glad I caught you before you replied, as after thinking a few minutes I realized I needed to change my first question to you. And that now is, I'm amazed and impressed that you can function as a cop with CH, are you behind a desk or on the street? What happens when you take a hit at work? Your a brave guy, I don't think I would want a loaded gun near me if I was getting hit really hard.
Jerry
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thebbz
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Re: New to MB HELP
« Reply #4 on: Jul 21st, 2007, 8:32pm » |
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Thanks for the good post. Alternative therapies are similar to traditional medications in that, they will fail if not administered properly. Hope you are doing better.
As we endeavor to percivere.
jb
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Jerry_M
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Re: New to MB HELP
« Reply #5 on: Jul 21st, 2007, 8:48pm » |
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To Everyone,
I also needed to add to my first post my gratiude and appreciation for this site, even if I was just lurking and reading for the past 5 years the support and knowing that there were other people going through what I was has helped me greatly, not to mention all the information and being able to diagnose myself with your help from my very first attack. I know how lucky I am I have no idea how some people cope, its just when your in the middle of it and the hits keep coming, nothing really matters except your universe of pain
Wish I didn't have to meet you, but what is,is. and I don't think I have ever met more giving loving supportive people then the people I have read here.
Best Wishs to all ( I'll shut up now)
Jerry
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thebbz
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Re: New to MB HELP
« Reply #6 on: Jul 21st, 2007, 8:51pm » |
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Awwwww Cool, You may help row this boat as well.
jb
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Jerry_M
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Re: New to MB HELP
« Reply #7 on: Jul 21st, 2007, 8:57pm » |
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jb,
I thought I had followed instructions in that I was drug free having held back my meds, and waiting 5 days before trying again. If you know another way, I'm all ears and willing to try just about anything.
Nice Meeting You
Jerry
PS I prefer to sail instead of row, maybe something we could explore
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thebbz
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Re: New to MB HELP
« Reply #8 on: Jul 21st, 2007, 9:28pm » |
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Quote: I'm all thumbs. 
jb
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Guiseppi
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Re: New to MB HELP
« Reply #9 on: Jul 22nd, 2007, 1:33am » |
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No offense taken!!! I turn off the cop ears when it comes to the shrooms etc. Due to work restictions it just isn't an option for me. It's been too effective for too many people to ignore it as an option.
Lithium has very little negative effect on me. A little lethargic for the first week or two and you pee constantly. After that I don't notice it and have been on it as long as 8 months. I;ve read where it has been of absolutely no use for some but then that's so typical of most things with CH! No consistency!!!
As far as working with them it has been a challenge to say the least. I've been at it for 27 years and was lucky to have good supervisors who would hide me out in safe assignments when I was really getting worked, cuz I'd work twice as hard when off cycle to make it up to them!
Guiseppi
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DennisM1045
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Re: New to MB HELP
« Reply #10 on: Jul 22nd, 2007, 8:20am » |
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Hi Jerry,
It's about time we attracted someone smart enough to think about adding sail power to our boat. Everyone else just uses oars 
I hope you get some relief soon. Your posts are fine in length. The more details the better folks here can support you.
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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