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crap, crap, crap and crap (Read 46769 times)

Just Plain Carl

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crap, crap, crap and crap
Oct 15^th, 2008 at 12:29am

Just when ur skippin through cluster hell with one or two K3 - K5 Ch at night with some manageable shadows during the day.
   BOOM full blown K7-K8 out of a sound sleep (and pretty cool dream I might add).
   Paced it away around the back yard for about a half hour. It's 41 degrees out which helps. I can only hope the neighbors don't see a crazy old fat guy in his underwear pacing back and forth and call the nut squad on me.
   I am only on Verapamil at this point whith minor hits at night, but decided to take an Ambien tonight. I can't say that caused it but I was sure disoriented when it woke me up.
   I'll try nuthin tomorrow night and see what happens.
   Oh well, it's 45min later and almost completely gone. Can't bitch about that too much. We all have had much much worse.
   I haven't whined in awhile and just felt like it. Sorry
   PF TO ALL
      JPC

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Pixie-elf CH.com Hall of Famer Offline I've tried the rest, and busting is the best! Posts: 517 Beaumont,Tx Gender:	Re: crap, crap, crap and crap Reply #1 - Oct 15^th, 2008 at 12:48am Have you tried Melatonin? I know it keeps a lot of us from waking up during the night... It's just a supplement, too. Mystina
Back to top	As far as I'm concerned, cluster busting has been the best treatment I've tried. No migraines since I started it, and my hits have gotten so much better. Wanna know more? Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or It's saved my life. IP Logged

Just Plain Carl

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Re: crap, crap, crap and crap
Reply #2 - Oct 15^th, 2008 at 1:14am

yeah, I tried 9mg Melatonin along with an Ambien and was still getting an attack after about 1 hr sleep. This was about a week ago and I was getting hit all night long after 1 to 1-1/2 hrs sleep
Seems like the first night I got any quality sleep was after I didn't take anything. Could of been the Verapamil kickin in, not sure.
This whole episode in not remotely close to what I went through six years ago. Not as much pain this time but the lack of sleep thing has really beat me up. Very hard to function during the day.
I still keep saying to myself "the last one was the last one" eventually it will come true.

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MaxPayne

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Re: crap, crap, crap and crap
Reply #3 - Oct 15^th, 2008 at 4:02am

Was pushing the beast back every other hour last evening, and then around 01 in the morning it woke me from a dream, trying to up the ante on the kipscale. Am glad to say that I was able to push it back again, so it remained at kip5 for about 20mins. I am waiting for the last one too now. I actually slept 5 whole hours last night so I am feeling a little more perky this morning:-)

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Just Plain Carl CH.com Old Timer Offline IT IS WHAT IT IS Posts: 449 Royal Oak, Michigan Gender:	Re: crap, crap, crap and crap Reply #4 - Oct 15^th, 2008 at 4:37am maybe it is the full moon 4am he got me with k8 for about 20 min (Was pushing the beast back every other hour last evening) I feel for you. I was doing that for a couple of weeks. Definately knocks the snot out of you. what prevents are you on? I hope your next one doesn't comes and you sleep til noon. Work can wait. JPC
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MaxPayne

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Re: crap, crap, crap and crap
Reply #5 - Oct 15^th, 2008 at 5:18am

Hey, I am not using any meds or anything this time around. I have a little experiment going to check if not using anything will shorten my cycle. Usually it lasts about three months. I have found something that works for me when the HA kicks in though, I do as many push ups as I can, and that cuts it short in a matter of seconds. Only 3-4 kip8-10's has slipped by that regime, but that is because I have been too slow hitting the floor:-)

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BarbaraD

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Re: crap, crap, crap and crap
Reply #6 - Oct 15^th, 2008 at 3:30pm

Carl - took me three tries before I gave the melatonin a "chance". I'd try it one night and it didn't work so I'd just say it doesn't work.

The third time I tried it I stuck to it a couple of weeks and lo and behold - it worked and has been working ever since. I NOW sleep at night and am much more rested for when the demon comes to visit during the day.

Of course he really loves me early in the mornings (about 4 am is his usual visiting time) but we usually just get up with about a 4 and he gets a blast of O2 and decides he doesn't like me in the mornings, so he goes away until after I've had my coffee and get in a better mood. Then he sometimes comes back for a rear end kickin'. I keep telling him we've got to break off our affair, but he keeps stalking me. What can a girl do? Shocked

Hope you get some relief soon....

Hugs BD

What don't kill ya, Makes ya stronger!

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thebbz Ex Member	Re: crap, crap, crap and crap Reply #7 - Oct 15^th, 2008 at 6:59pm I just wanted to add....crap poop crap and crap again. thebb Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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DeStijl CH.com Veteran Offline Posts: 205 Lubbock, TX Gender:	Re: crap, crap, crap and crap Reply #8 - Oct 16^th, 2008 at 12:17am to quote Homer Simpson..."CRAAAAAAAAAAAAP!" and of course, crap, and also crap. poo
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Izzy

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Choose life.

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Re: crap, crap, crap and crap
Reply #9 - Oct 17^th, 2008 at 8:19pm

Just Plain Carl wrote on Oct 15^th, 2008 at 12:29am:

I can only hope the neighbors don't see a crazy old fat guy in his underwear pacing back and forth and call the nut squad on me.
I am only on Verapamil at this point whith minor hits at night, but decided to take an Ambien tonight. I can't say that caused it but I was sure disoriented when it woke me up.

About the nut squad: We had a nieghbor (we live in a middle apartement, so neighbors on all 4 sides, up, down, & sideways) knock on our door at 3 am asking if he needed to call the police. I responded "No, my husband is just sick." So...can understand the worry about nieghbors! *lol*
About the Ambien: Jon also has frequent bouts of insomnia & doesn't want to take sleeping pills because in the past he's gotten headaches (but before he was officially diagnosed so can't definitely say it was cluster but about 99.9 percent it was, unofficially). Is this a frequent thing, does anyone else share this experience?

"There are no monuments dedicated to me, and my name will soon be forgotten, but I have loved someone with all my heart and soul, and to me, this has always been enough.”

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Just Plain Carl CH.com Old Timer Offline IT IS WHAT IT IS Posts: 449 Royal Oak, Michigan Gender:	Re: crap, crap, crap and crap Reply #10 - Oct 17^th, 2008 at 8:30pm Last night I took an ambien and 9mg melatonin and had three attacks after falling asleep. The night befor I only took the 9mg of melatonin and slept through the night. I will try that tonight and see what happens. I just have a bad feeling about the ambien. I'll let you know JPC
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thebbz Ex Member	Re: crap, crap, crap and crap Reply #11 - Oct 17^th, 2008 at 11:58pm Carl, Ambien gave me the worst nightmares I've ever had. My expierence is anything that makes me drousy is a trigger. Melatonin and Ambien included. all the best thebb PS. Crap crap crap and holy crap. Some sleep would be nice.
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Just Plain Carl

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Re: crap, crap, crap and crap
Reply #12 - Oct 18^th, 2008 at 7:19am

so much for melatonin
slept from 10:00pm to 11:15 up with k6-k7 for 30 min
slept from 12:30am to 4:00 up with k2-k3 for 15 min
slept from 5:30am to 6:45 up with k7-k8 for 30 min

I think I am just as well off not using anything

I am very lucky the attacks are not so severe or lengthy
got to take the good with the bad

so, CRAP AGAIN

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Kevin_M

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Re: crap, crap, crap and crap
Reply #13 - Oct 18^th, 2008 at 8:28am

Just Plain Carl wrote on Oct 15^th, 2008 at 12:29am:

Just when ur skippin through cluster hell with one or two K3 - K5 Ch at night with some manageable shadows during the day.
BOOM full blown K7-K8 out of a sound sleep

I am only on Verapamil at this point

What's up with the verap Carl, when did you start with it and where you at with dosage? It can be adjusted gradually if side effects have been minimal. Give the doc a call on how it's been going, depends what dosage you're at, could be a mid-cycle arriving, which can break through a previous level of protection that seems to have been barely containing it. With doc's ok, upping a step at this point might give better results through this period, decending gradually again as this period passes. It could be only for a few weeks perhaps.

« Last Edit: Oct 18^th, 2008 at 8:31am by Kevin_M »

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Just Plain Carl CH.com Old Timer Offline IT IS WHAT IT IS Posts: 449 Royal Oak, Michigan Gender:	Re: crap, crap, crap and crap Reply #14 - Oct 18^th, 2008 at 10:11am Hi Kev, I'm on 240mg of Vrap. Have been all month. I do have the ok to up it to 360mg. I think I will start that today. Judging from past episodes, I should be at the end of this one. However, this bout has been so much different the prior ones. PFD's to every one JPC
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Skyhawk5

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Re: crap, crap, crap and crap
Reply #15 - Oct 18^th, 2008 at 11:40am

Other than the pain, sleep has to be the biggest problem with CH for me. This cycle I sleep sone day then I'm up for 48hrs. I don't try to knock myself out because when I do I wake dazed and delay reacting to the hit, and over my 20yrs sufferd a few too many kip-10's because of this, I think.

Just a suggestion, but I've only went to the ER twice for CH, but it has been to get an injection of DHE, and this will knock out all my shadows and give at least 24hrs to sleep untill the cows come home.

Hoping to help, Don

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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DennisM1045

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Re: crap, crap, crap and crap
Reply #16 - Oct 19^th, 2008 at 8:24am

Just Plain Carl wrote on Oct 18^th, 2008 at 7:19am:

so much for melatonin
slept from 10:00pm to 11:15 up with k6-k7 for 30 min
slept from 12:30am to 4:00 up with k2-k3 for 15 min
slept from 5:30am to 6:45 up with k7-k8 for 30 min

Hey Karl,

Sorry things are still "interesting" for you. CRAPPPP is right!

I find it takes a week or so for the Melatonin to build up in your system and take effect. One night typically doesn't do it. I start at 6mg and ramp up over that week by 3mg every other night to get to 9-12mg.

Don't get impatient with the tweaks your making. It takes time for a lot of this stuff to make an impact.

I'm with Kevin on the verapamil dosage. If you're cleared to go up then do it. Waiting for your cycle to end might take a while. If you can get some relief in the mean time then take it.

Good luck...

-Dennis-

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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Just Plain Carl

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Re: crap, crap, crap and crap
Reply #17 - Oct 19^th, 2008 at 11:59am

Thanks Dennis,
   (I find it takes a week or so for the Melatonin to build up in your system and take effect)
   That seems to make sense.

   Last night was an "UNCRAP" night. I just have that feeling that I am at the end of my cycle. I didn't up the Vrap but I did take 20mg of Prednisone before I went to bed at 1:00am. Slept until 9:30. Woke up a couple time with some shadows but had no hits. I feel mighty fine today.

      Happy UNCRAP to everyone
JPC

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thebbz Ex Member	Re: crap, crap, crap and crap Reply #18 - Oct 19^th, 2008 at 3:02pm Good deal JPC!!! I will add a few more craps though. Crap, crap and crap again. This is a pretty cool crap thread. thanks thebb
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Just Plain Carl CH.com Old Timer Offline IT IS WHAT IT IS Posts: 449 Royal Oak, Michigan Gender:	Re: crap, crap, crap and crap Reply #19 - Oct 21^st, 2008 at 6:58am Crap Again, Couple of pain free nights (nice to get some sleep), but back in the groove last night. Oh well, today is another day and "The Last One Was The Last One" PFD's to all JPC
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barry_sword CH.com Alumnus Offline Mountain Biking Keeps Me Sane Posts: 3947 Bracebridge, Canada Gender:	Re: crap, crap, crap and crap Reply #20 - Oct 21^st, 2008 at 7:15am If you got the ok from your doc to increase the Verap to 360mg daily then give it a try. I am on 480mg daily and anything less opens the door for the beast to nail me. Hope you find the right cocktail that works for you bro! Hang in there!
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thebbz Ex Member	Re: crap, crap, crap and crap Reply #21 - Oct 21^st, 2008 at 3:06pm crap again. Stupid head. thebb
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thebbz Ex Member	Re: crap, crap, crap and crap Reply #22 - Oct 27^th, 2008 at 2:05pm And crap, crap, crap,crapcrap, crap and crap some more dammit. 4th week. Did i mention crap. I'm still kicking demon bastard. thebb 02,02,02 sometimes nothing works,whaa whhaaaa whaaa.
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Just Plain Carl

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Re: crap, crap, crap and crap
Reply #23 - Oct 27^th, 2008 at 9:17pm

Ongoing Crap.

I'm still in the crap zone myself. It has been much worse before, but I can still whine if I want to. CRAP, CRAP and CRAP.

8th week for me. I should be very close to being done with this. However, this episode is so much different from my last one, it's hard to tell.

Oh well, tonight is another night and tomorrow is a new day.

UNCRAP on Ya

JPC

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CH-HELL Ex Member	Re: crap, crap, crap and crap Reply #24 - Oct 27^th, 2008 at 9:57pm CRAP is right Im on my 160th week or there about I've got no advise just hang in there it will pass, I hope it passes sooner than later. Wishing you pf days and nights, Phil
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