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Topic: I'm new...glad I found you! (Read 215 times) |
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simplevox
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I'm new...glad I found you!
« on: Sep 27th, 2002, 1:53pm » |
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I am new to the website this week...thank God I found you guys! I started having migraines about 10 years ago,but the cluster headaches have been going on for about 7 years. I don't get regular migraines anymore. I
usually get my cluster cycle in the summer...June or
July, but that is not true every year. They last for
4-8 weeks and then I don't get into another cycle
until the next year. This year they started September
1st. The timing of mine is pretty typical...starting
about 2 hours after I go to sleep at night and lasting
from 30 minutes to 2 hours. I am currently on
Verapamil every day and Zomig when I get a headache
and my neurologist just doubled my dose of both. I am
on Prednisone this week to try and stop the cycle. I
haven't had a cluster since Sunday night. I will just
have to wait and see if they come back after I take my
last dose of the steroids on Monday. I really hate
living with the fear of not knowing if they will come
back. That is the part that no one really
understands. They understand that when I am having
one that I am in excrucuating pain, but the daily
anxiety of waiting for the next one is almost as bad.
Plus, the drugged up feeling the next day and the
exhaustion of being up during the night don't help. At
least I have a very understand family, boss, friends
and boyfriend who are helping me as much as they can,
although I think they do get sick of me talking about
it all the time. My boyfriend and I started dating
last Fall and so he hadn't seen me deal with this
until this month. I think he is a little freaked out
by it, but he has been a tremendous help. Each year I
get more and more depressed about having to deal with
this. That's why I started looking around on the
internet this year for more information and as much
help as I could find. If they come back again after
this steroid treatment is over, I don't know what I am
going to do. ???
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Simplevox
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jonny
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Re: I'm new...glad I found you!
« Reply #1 on: Sep 27th, 2002, 2:29pm » |
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I am going to tell you what you are going to do when they come back.
You are going to come here where you have people that know your pain (Just dont whine I hate whiners) and by the way bring that boyfriend by so he can see you are not a freak.
Welcome aboard, grab an oar and start rowing......we are rowing towards the port of cure!!
.................jonny
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StanTheMan
New Board Veteran
"I can do all things through Christ..."
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Re: I'm new...glad I found you!
« Reply #2 on: Sep 27th, 2002, 3:47pm » |
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Sorry you're having to deal with clusters. But we're glad you found us!
Definately bring your significant other to this site -- encourge him to browse through the general info, etc. The more he's educated about what you're dealing with, the better he'll be at knowing the DO's and DONT's of supporting you.
Hang in there...let's hope and pray the meds you're taking stop the beast dead in it's tracks!
StanTheMan
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"All the days of the afflicted are bad, but the cheerful heart has a continual feast." - - - - - Proverbs 15:15
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domm
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I love YaBB 1G - SP1!
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Re: I'm new...glad I found you!
« Reply #3 on: Sep 27th, 2002, 4:17pm » |
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simple - glad you found us, but sorry you felt compelled to seek us out. There is tons of info here and on the OUCH site. push buttons, read, read, read and talk to your doc about Oxygen. Read up on it so you know how to use it properly, but it is the (in my opinion) best abortive around and it doesn't leave you with a drugged up feeling.
The preventatives you are on work for most, but not all. As you will come to find out, what works for one doesn't for another.
I hope you find the right set of meds and have many more PF days and nites.
welcome
domm
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Drk^Angel
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Re: I'm new...glad I found you!
« Reply #4 on: Sep 27th, 2002, 8:31pm » |
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Welcome to the board! Sorry that the beast is rammin' a 2" red hot steel pipe through your head, fillin' it with gunpowder, sealin' off the other end, and lightin' a fuse. Welcome to the family!
PFDAN...................... Drk^Angel
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Charlie
CH.com Alumnus
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Re: I'm new...glad I found you!
« Reply #5 on: Sep 27th, 2002, 11:07pm » |
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Welcome aboard. Follow this link and turn on your printer. Your friends and family need this:
http://www.ouch-uk.org/ch/note_colleagues.cfm
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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ShariRae
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Re: I'm new...glad I found you!
« Reply #6 on: Sep 28th, 2002, 8:49am » |
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So sorry you had to find us.. but stick around..there is a wealth of information and support here. There is also a supporters board for your family & b/f. We will be here for you wheather the beast comes back or not so pull up a chair & stay awhile..share your strength & knowledge as well as your fears and pain.
huggss
Shari
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Only two defining forces have ever offered to die for you,
Jesus Christ and the American Soldier.
One died for your soul, the other for your freedom.
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Slydog
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I love YaBB 1G - SP1!
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Re: I'm new...glad I found you!
« Reply #7 on: Sep 28th, 2002, 12:30pm » |
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Welcome, Glad you found us!! Sorry you need us!! Hope you come here often when you need us and also to support others when you're feeling good PFDAN Slydog
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curtisdsc
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Re: I'm new...glad I found you!
« Reply #8 on: Sep 28th, 2002, 2:07pm » |
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welcome simple, I have only been here a couple of weeks myself. There is a world of info between this site and ouch. Plus some of the old timers make for some fun reading. Goodluck kicking the cycle.
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simplevox
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Re: I'm new...glad I found you!
« Reply #9 on: Oct 1st, 2002, 1:21pm » |
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well...they're back again!! lucky me!! the first day off steroids!! whoo-hooo!!
i'm on hold with my neuro's office to find out if i should increase the verapamil again or add depakote to what i am currently taking...
has anyone had good luck with verapamil and depakote?
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Simplevox
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Linda T
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Re: I'm new...glad I found you!
« Reply #10 on: Oct 1st, 2002, 2:23pm » |
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Dear simple - sorry they're back. I had a rough time through November 01 and April 02. Was on 2 courses of pred. First course at least gave me a break for about 9 days second course did nothing.
I was on depakote (500mg) for 5 weeks. Did nothing but make my attacks worse. I went from 3 attacks (always during the nite) per day to about 8 attacks per day (same 3 at nite and 5 during the day). Neuro seemed to think that depakote was my magic bullet somehow and upped me to 1000mg daily. After about 2 weeks of that I insisted he cut me off. I figure if it ain't working in 7 weeks in ain't gonna! Doc put my on Inderal LA and the attacks lessened in frequency and intensity. Only experiencing mild shadows now. Of couse, there is no way of knowing for sure if the Inderal has worked or if this would have happened anyway.
Good luck and wishing you all PFDAN always, Linda T
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What a long, strange trip it's been!
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