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Topic: Back after 2 years (Read 489 times) |
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dejay
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Back after 2 years
« on: Mar 8th, 2006, 8:02pm » |
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I hope I'm posting this in right place. I'm back after 2 years, I've been reading boards almost daily for 2 months. Sometimes I get lots of hope, sometimes almost tears.
I'm 54, first got CH 6 years ago, 1 per night, 1 hour after bed, came in fall, lasted about 1 month. Same thing following year. Doc said sinus infection.
Two years ago got around FEb., which was like spring here in Louisiana. Doc said sinuses again, I downloaded some stuff from this sight, showed him, he called a neuro, confirmed CH, gave me steriods [dexa], verapamil, imitrx inhalers. Meds helped, but this bout was different, got HA's in late afternoon, 1 hour after sleep, sometimes several a day, lasted about 2 months.
Anyway, they're back, since end of dec. Different this time, all the others were "ice pick" through my eye, this time is more my temple,burning, still get clogged nose, eye.
I thought I was done a couple of times in the past 2 weeks, I'm taking 120 verapamil, 1 at 3:00 pm, 1 at 11:pm., each time I try to knock off 3:00 pm I get hit about 5:30. Haven't had to use imitrex in about 3 weeks, thank God.
Sorry I'm going on so long, got a million questions, When will they end?, but 1 questions could use some input with. Sinuses, I notice after a HA in the afternoon, my sinuses are a wreck for hours. I also have allergies and everything is blooming here now. Any suggestions on antihistimes? What about decongestants,sudafed. Sometimes I take it and it helps, sometimes it seems like sudafed triggers an attack? Any help on this?
Thanks
denny
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Jonny
CH.com Alumnus
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Give me a shovel Ill dig my own grave!
 
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Re: Back after 2 years
« Reply #1 on: Mar 8th, 2006, 8:18pm » |
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on Mar 8th, 2006, 8:02pm, dejay wrote:
My advice is to start reading and dont stop until you know more than your doc, its all here....you just have to read it.
Welcome home......sorry your hurting!!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Kris_in_SJ
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There's no place like home.
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Re: Back after 2 years
« Reply #2 on: Mar 8th, 2006, 8:18pm » |
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Hi Dejay and welcome.
First, you should know that colds, sinus problems, etc. are usualy sure fire triggers for particularly bad cluster attacks.
Second, it's not uncommon for cycles to change - in terms of frequency and severity. Like you, I had an older onset - age 42. Each cycle seems a little worse, but thanks to this site, each cycle that comes around, I'm a little more educated.
If you haven't yet seen and printed this article, I'd advise you to do so.
http://www.brightok.net/~mnjday/chtherapy.pdf
You probably need a higher dose of Verapamil for starters. I don't find any decrease in intensity or frequency until I've reached 480mg/day. Hopefully, you're getting relief from the Imitrex spray as an abortive - if not, you might want to consider autoinjections or oxygen therapy.
Meantime, keep your sinuses as clear as possible - perhaps Benedryl, Claritin, or Flonase Nasal Spray.
Sorry you are suffering so much! I'm sure more of the family will be around soon to give more advice.
Hugs,
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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Jasmyn
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Re: Back after 2 years
« Reply #3 on: Mar 9th, 2006, 1:00am » |
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Hi Dejay, good advise from Jonny and Kris.
Hope you find some PF time soon.
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Jazz 
Madness is proclaimed by society’s inability to accept its own infallibility
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: Back after 2 years
« Reply #4 on: Mar 9th, 2006, 3:03am » |
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Dejay,
I'm so sorry that the beast is back. I wish you PF time as soon as possible... 
Sanna
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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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dejay
New Board Newbie
I love YaBB 1G - SP1!
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Re: Back after 2 years
« Reply #5 on: Mar 9th, 2006, 11:09am » |
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Thanks for the welcome & kris thanks for that link, a lot of hope in it. I'm on my way to the Dr. My insurance won't give me refill on verapamil, it has to come "mail order". Yesterday afternoon was a little hairy, but slept through the night again. What a relief. For a couple of weeks I've escaped that nightly attacks, guess the verapamil and melatonin are working. Just those afternoons, I guess you call them shadows, they freak me out.
Also going to ask about flonoaise for allergy and sinus trouble.
Thanks again, I feel like I can make it through the day.
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Richr8
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Re: Back after 2 years
« Reply #6 on: Mar 9th, 2006, 5:44pm » |
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on Mar 8th, 2006, 8:02pm, dejay wrote:
I agree on the Verapamil, 120mg seems a little light. I have good luck with 480mg. Also, please check out the info on Oxygen. It is my primary abortive and gives me relief about 60% of the time.
wishing you PFDAN,
Rich
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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Beastfodder
New Board Old Timer
O2 and clusterbusters - naturally
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Re: Back after 2 years
« Reply #7 on: Mar 10th, 2006, 5:20am » |
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Do not contemplate sinus surgery.
Do look into O2
Keep it simple with sinus care - steam's hard to beat as an easy decogestant.
Do think carefully before trying the pepper up the nose stuff for example.
Don't ever stop reading up on it till you found an effective cure that works for you.
all the best
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O2 and clusterbusters - naturally
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dejay
New Board Newbie
I love YaBB 1G - SP1!
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Re: Back after 2 years
« Reply #8 on: Mar 10th, 2006, 12:28pm » |
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Thanks for the info, I am not going to go overboard with sinus care.
I meant to say 240 on the verapamil, 120, twice a day. Seems to be working.
This cycle had been very different, began, 1 attack every 4 days, than 1 every other day, than, full blown. I wonder if it will end that way. A couple of times I thought I was out, only to be disappointed.
Every other cycle, came out of nowhere, and left the same way.
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