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Topic: Newbie Hello All (Read 337 times) |
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Biggiestyle
New Board Newbie
Wasn't looking to good but I was feeling real well
Posts: 14
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Newbie Hello All
« on: Feb 17th, 2005, 6:31pm » |
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Ok This will be scattershot.
I was just diagnosed with CH. I have been haveing a cycle probably once a year or so. It took 4-5 years for someone to fnally diagnosed me. Had MRI, MRA, Seen 2 neuros. FINALLY..... I AM NOT GOIN CRAZY!!!
My CH come at around 8-9pm at night. I don't get them in my sleep(knock on wood). I only usually get one a day. That is the good part. The bad is they are usually 8-10 on KIP scale. I am unsure if you call the feeling behind my eye that lingers for most of the day Shadowing. There isn't any pain. You can just slightly feel something back there.
Anyway, I have some questions hopefully some of you will take the time to answer. All would be appreciated.
My doctor just gave me Predisone. I am to take 3 20mgs a day for 7 days and then take 1 20mg a day for 3 days. He also gave me Lidocaine ointment to put up the nose if a CH comes on. The pharmacy was out of the Nasal stuff.
Do you think the PRED level is ok(I understand we aren't DRs.)?
The ointment actually killed my CH in about 5minutes 2 nights ago. That was the 1st day on Pred. I didn't get a CH last night. Pred working I guess. I understand Pred is only a stop gap but maybe just seeing if the pred will get me through my cycle.
Does anyone drink during your cycle? If so how do you avoid or limit the CH? I have a wedding coming up and I am the best man. I would like to have a few with my friend but don't want to risk a CH at his wedding.
My doctor is preety cool I think. He mentioned also that some people use o2. So I think he wouldn't have a problem with giving me that.
Thank you all for listening. I might have rambled here do to the PRED. I feel like I am wired.
Look forward to chatting with you all. Glad I found this board!!!!
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Filbert
New Board Veteran
"Gravy-pure gravy and don't forget it."
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Posts: 241
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Re: Newbie Hello All
« Reply #1 on: Feb 17th, 2005, 7:39pm » |
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Hi Biggie and welcome to the board! You're right the pred usually gives people a painfree break and can if you're very lucky break the cycle. Try and get the o2 if you can it helps many people.
Cheers Filbert.
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nani
CH.com Alumnus
New Board Hall of Famer
Got kudzu?
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Re: Newbie Hello All
« Reply #2 on: Feb 17th, 2005, 9:03pm » |
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Welcome Biggie...sorry you're here. Alcohol is a trigger for many of us. You may want to have your own bottle of sparkling cider at the wedding. The treatment you're getting sounds pretty standard...what counts is that you're getting relief. Pain free wishes, nani
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Others may come and go, but MY power is MINE.
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Biggiestyle
New Board Newbie
Wasn't looking to good but I was feeling real well
Posts: 14
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Re: Newbie Hello All
« Reply #3 on: Feb 17th, 2005, 9:45pm » |
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Glad to see some of you out tonight. Thanks for the input so far.
I am definetly going to try and hit my DR up for the o2.
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vig
CH.com Alumnus
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CHit Happens
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Re: Newbie Hello All
« Reply #4 on: Feb 17th, 2005, 9:55pm » |
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lidocaine ointment, huh? cool!
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never, Never, NEVER quit. -Winston Churchill
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sandie99
New Board Hall of Famer
Wish it, dream it, do it - inspite the pain!
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Re: Newbie Hello All
« Reply #5 on: Feb 18th, 2005, 1:29am » |
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Welcome to aboard!
Sorry that you're here... 
What comes to alcohol & Ch... I woudn't go there. Although Ch doesn't have similarly triggers like migraines do, alcohol still manages to trigger Chs with most of us. Want to have a PF day as a bestman? My advice: pretend you're drinking! 
I hope your meds work for you! 
Best wishes & PFdays,
Sandie
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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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TonyG1
Guest
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on Feb 18th, 2005, 1:29am, sandie99 wrote:
What comes to alcohol & Ch... I woudn't go there. Although Ch doesn't have similarly triggers like migraines do, alcohol still manages to trigger Chs with most of us. Want to have a PF day as a bestman? My advice: pretend you're drinking! |
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What Sandie said, Alcohol is the root of all evil  during a cycle.
Out of cycle  , it is ok (within reason).
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Biggiestyle
New Board Newbie
Wasn't looking to good but I was feeling real well
Posts: 14
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Re: Newbie Hello All
« Reply #7 on: Feb 21st, 2005, 11:09pm » |
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Thanks for all your imput.
I will keep everyone posted.
Had a 8-9 on Kip last night. lasted 2 hours. I need to get the TREX nasal stuff. I am calling DR tomorrow.
Garrett
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