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Topic: Night Demon (Read 374 times) |
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midwestbeth
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Night Demon
« on: Jun 22nd, 2007, 3:28pm » |
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Is really kicking my a$$!!
Absolutely nothing in my arsonel of ch wepons is keeping the nightly demon away. Kip 10+ last night for 1 1/2 hrs. I still feel the ch hangover.
I should be wearing an approach with caution t-shirt. Depending what you say I could either burst into tears, chew your a$$ or both.
Lack of sleep is really starting to wear me down. My hubby is starting to freak out seeing me in so much pain and not being able to do anything. I go to the doc on Monday morning and he will be going with me. Hopefully I will get a prevent that works for me.
I hate this!!!!!!!!!!!
Beth
<rant over>
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| « Last Edit: Jun 22nd, 2007, 3:33pm by midwestbeth » |
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Do more than exist - live
Do more than touch - feel
Do more than look - observe
Do more than read - absorb
Do more than hear - listen
Do more than listen - understand
~ John Rhodes
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Rosybabe
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"Too much of a good thing can be wonderful!!
 
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Re: Night Demon
« Reply #1 on: Jun 22nd, 2007, 3:52pm » |
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Sorry to hear you were in so much pain Beth  , I wish I coould tell you something or give something to make you feel better...all I can do is to send you all my positive vibes so the Doc can find the perfect prevent for you.
Hang in there Girl!
We are here for you and you know it! 
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 Believing is just the beginning!
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UN solved
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O yes, I know the night demon too. He used to visit me everytime I fell to sleep. Now he just visits when I'm not expecting it.
Goodluck, I hope you find a prevent that helps soon 
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Ray
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Re: Night Demon
« Reply #3 on: Jun 22nd, 2007, 8:14pm » |
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Dear Beth:
I am so sorry for this. I've gone through phases where the beast would attack an hour or so after falling asleep, it would take me a couple of hours to settle back to sleep. Wham, an hour later, back up dancing with the beast. Then repeat the process. I'm sure others of us have done so too.
In short it SUCKS THE BIG ONE!
But this too shall pass. Take it one moment at a time and let the beast win.
Wishing you PF days and nights,
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
http://www.myspace.com/rayplace
http://www.shadesgarden.com
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gMike
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Re: Night Demon
« Reply #4 on: Jun 22nd, 2007, 9:16pm » |
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Sorry to hear you are suffering. Make the doctor understand and go armed with all the printed info. you need to convince him/her that there are things that can done if he/she will cooperate!
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I used to care, but things have changed!
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midwestbeth
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Re: Night Demon
« Reply #5 on: Jun 22nd, 2007, 11:13pm » |
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Thanks everyone for the vibes
I've been back on Dexamethasone for 4 days. It is keeping the day hits down, but the nightly demon still likes to pay a visit.
Problem is mostly the lack of sleep. If I doze before 2:00 am, I get 2 bad hits. So, I've been staying awake until at least 3-4 am. 20 mins of blissfull sleep and then bam!! Just the one kip 9-10+ for 90 min or so. It's really getting hard to function during the day. I get up at 6:00am normally, but my hubby has been great about letting me sleep in a couple hours late this week (We own our own business otherwise I think I would have been fired long ago)
I know this to shall pass and I'm not going to let that bastard win 
Thanks again
Beth
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Do more than exist - live
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Do more than look - observe
Do more than read - absorb
Do more than hear - listen
Do more than listen - understand
~ John Rhodes
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UN solved
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90 minute hits  Don't you have an abortive that'll work quick ?? I remember having 90+ minute hits, that was before Trex.
Goodluck
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Buzz
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Re: Night Demon
« Reply #7 on: Jun 23rd, 2007, 1:36am » |
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Beth, I'm having attacks that are taking up more hours in the day than the gaps between them, some as nasty as Kip9/10.
I'm finding that the best way to endure the pain is to count; I count the dashes marking the centreline of a long, straight road running through the desert. If you can learn to concentrate (and its very difficult) you can eventually take your mind to another place and the time of the attack seems to become shorter.
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The cure is out there somewhere...
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vegas1002
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Re: Night Demon
« Reply #8 on: Jun 23rd, 2007, 9:41am » |
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Beth, I am so sorry to hear that. I am right beside you. Last night I only had 2 hits 8/9 kip and I am grateful that it hasn't been my 3 -4 hits a night. I go to the dr this Wednesday. I do have Imitrex nasal spray but it doesn't work for me. Need to go back to the shots and O2. Good luck and I hope you get some PF sleep soon.
Alex
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BarbaraD
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Re: Night Demon
« Reply #9 on: Jun 23rd, 2007, 2:43pm » |
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Beth,
Have you tried melatonin at night. Takes a couple of weeks to start working, but it's been a godsend for a lot of us. I usually take 12-15mg before bed and it gets me thru the REM sleep and no hits at night (usually)
Also RED BULL!!!! Have you tried that at the onset of the demon? And O2?
Sounds like you need to find a prevent cocktail (trial and error till you find one that works). I know it took me a long time to find the RIGHT one, but it's out there somewhere. A lot of people on here swear by verap. Some mix it with lithium or something else -- you just have to find the right thing. I take topamax (either it works or you hate it and say bad things about it - it's my miracle prevent).
BUT you need to be talking to you doc and FINDING something that works as a prevent for the night hits.
Hugs BD
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What don't kill ya, Makes ya stonger!
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midwestbeth
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Re: Night Demon
« Reply #10 on: Jun 23rd, 2007, 7:54pm » |
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I got about 4 hours sleep last night with no hits!!! YEA!!!
Zomig, 02, trex, etc can't bring down the night beast 
I think it may be because I'm already at a kip7 upon waking and it ramps up really quick from there. I usually go for the trex or zomig as soon as I wake up, but they don't even touch it.
Hopefully the doc will be able to find the right prevent. Verap is out because of edema side effect I had.
I have melatonin, just haven't taken it yet. I'm taking Kudzu, tuarine, and a magnesium, calcium and zinc supplement along with the dex (steroid) right now. I'm out of trex. Went on a family vacation to Branson last weekend and used it all just to get through the weekend (we had a great time  ) I have 2 zomigs left. Good thing I'm seeing the doc on Monday, he gives me lots of samples.
Thanks everyone,
Beth
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Do more than exist - live
Do more than touch - feel
Do more than look - observe
Do more than read - absorb
Do more than hear - listen
Do more than listen - understand
~ John Rhodes
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UN solved
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Can I take a 'jab' at it and guess that you are using only oral medications ? None of those work for me either. I must use the Trex 'jabs'. Have you tried the jabs ?
Goodluck
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midwestbeth
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Re: Night Demon
« Reply #12 on: Jun 23rd, 2007, 10:23pm » |
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on Jun 23rd, 2007, 8:40pm, UN solved wrote:Can I take a 'jab' at it and guess that you are using only oral medications ? None of those work for me either. I must use the Trex 'jabs'. Have you tried the jabs ?
Goodluck
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I've never tried the oral trex. I've been jabbing myself so much my arm is sore. The trex tip used to work, now I need the whole shot to get relief. Damn high cycle!
Beth
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Do more than exist - live
Do more than touch - feel
Do more than look - observe
Do more than read - absorb
Do more than hear - listen
Do more than listen - understand
~ John Rhodes
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