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Topic: Changes, changes and The Beast (Read 157 times) |
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Kris_in_SJ
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Changes, changes and The Beast
« on: Feb 6th, 2008, 8:10pm » |
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Well, for all the old-timers who know me ... I'm finally realizing the truth of how this monster morphs.
I've always been episodic - cycles about 5 years apart. Then, I was shocked by an episode about 6 months ago cos' it had only been 3 years (yes, I know how lucky I've been to have so much pain-free time).
Now, shockers of all shockers - I'm cycling again - just 6 months since the last one. This one seems to be a little different though. I started high-dose Verap right away after the first hit, but I seem to be getting an attack only every 3-4 nights. Also, the time has changed. I used to get them every evening at 9:00. Now I get awakened by them at 11:30 or so. This has been going on for about 3 weeks now. Even with the Verap, the intensity of each hit is consistent (7- and 9mg of Melatonin each night hasn't helped a bit. Usually I start out with a hit every 3-4 nights, ramp up to 1 a night, then start ramping down again once the Verap kicks in. What the hell is going on here!?
I worry I'm becoming chronic. I've avoided a Pred taper this time because the last one nearly made me crazy. Thank goodness Trex still works like a charm.
Sorry for the rant, but I'm in quite a state, and wishing that 5 year break would make its way back to me. Plus, I miss you guys. Thanks for listening.
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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E-Double
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Re: Changes, changes and The Beast
« Reply #1 on: Feb 6th, 2008, 8:27pm » |
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Awe Kris...don't sweat it!!!
I know easier said then done but really try to remain yourself = positive!!
as far as chronic goes, you know the schpiel: 1yr without 30days consec pf time.
Just do your best and it will pass.
Eric
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I can't believe that I have to bang my
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lionsound
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breathe
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Re: Changes, changes and The Beast
« Reply #2 on: Feb 6th, 2008, 9:27pm » |
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well, we missed you too 
it's nice to hear from you, Kris.
I wish it was because you won the lottery or something... and not that your noggin is throwing you for a loop. it stinks when you don't know what to expect.
somewhere on the meds board are posts about taking more than 9mg of melatonin, if you are interested.
The best med is support and we are here for you.
be well and PF!
-rori
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kcopelin
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good grief
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Re: Changes, changes and The Beast
« Reply #3 on: Feb 6th, 2008, 10:49pm » |
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Kris, you could try upping the melatonin to 12 or even 15 mg. or add benadryl...
you're not chronic yet so please don't rush it,okay.
Sorry your head is weirding out.
PFDAN
kathy
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| « Last Edit: Feb 6th, 2008, 10:50pm by kcopelin » |
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Travis1980
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Re: Changes, changes and The Beast
« Reply #4 on: Feb 6th, 2008, 11:05pm » |
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Hey Kris,
I'm rather new here, but been dealing with Episodic CH for 10 years. Just this year I have gotten two cycles for the first time ever. i usually go 2 years between. This year everything is different, especially the time of day when I get a hit. I am 2 1/2 months into this cycle. Previously, I had never had one longer than 3 weeks. So I feel your fear of going chronic. My only saving grace has been Pred-Verap taper with 12mg Melatonin every night. I can actually go a week without a heavy hit like this and for me, the side effects of the Pred. are far better than the imitrex. Good luck buddy
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Guiseppi
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Re: Changes, changes and The Beast
« Reply #5 on: Feb 7th, 2008, 9:54am » |
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Welcome back! Sorry the slamming has begun again. I didn't start getting the night time terrors until I was in my 40's. Wonderful how he morphs so often just to dick with you!
If the verapamil loses its effectiveness consider either adding lithium or trying lithium as a stand alone. It's been my first line prevent forever and is still holding strong as i head into my "silver" years!
Like E sez, it's mostly your attitude, you've always had the right one, you'll kick its ass again.
Guiseppi
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hotprestwich
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Re: Changes, changes and The Beast
« Reply #6 on: Feb 7th, 2008, 12:00pm » |
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so sorry that the beast has come back to you,
the mophing thing is weird, happens all the time for me,
i used to get hit every year then i got a 3 year break then a 5 year break, i guess it mophed into a better thing but every cycle i get is different,
i hope for you that its a short one, mine last normaly 6-8 weeks, this cycle i had a month of hell with the most frequent and intense headaches and now for the last 2 weeks i havent had an attack, dont know if the beast has gone but im glad for the pain free time,
lets hope after this cycle that you get an even longer remision,
btw, i'm med free only 02 and coffee
welcome back
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nani
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Re: Changes, changes and The Beast
« Reply #7 on: Feb 7th, 2008, 3:59pm » |
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Hey, girlfriend... I've missed you! 
Sorry you're back, though. I can't offer much else but support, prayers and vibes... and you know you've got those.
Keep us posted, and don't be a stranger.
hugs and love, nani,
who is worried about becoming episodic after finding Clusterbusters... 
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sandie99
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Re: Changes, changes and The Beast
« Reply #8 on: Feb 8th, 2008, 4:09am » |
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Kris,
I'm so sorry that the beast is the reason you're back.  It's good to see you back in here, though.
Lots of PF wishes,
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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Kris_in_SJ
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Re: Changes, changes and The Beast
« Reply #9 on: Feb 9th, 2008, 7:52pm » |
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Thanks for all the good wishes and vibes, my friends. I hate being a stranger and only coming around when I'm cycling - I used to get really pissed off at others who did that.
However, I've given up my business and started working for a really great company. Love the job, but my time is truly limited lately. I'm so thankful I don't get hits during the day! Nobody at my job knows about this horrible thing I suffer - sure would like to keep it that way!
I have a doc's appt. on March 1st. If I'm still getting hit, I guess I'll have to try something different. I'll try to check in more often.
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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