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Topic: Hello......Help......Please....... (Read 562 times) |
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wingnut04
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Hello......Help......Please.......
« on: Apr 18th, 2004, 5:38am » |
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Hello, my name is Kevin and I'm a newbie here.........
I was in remission for 7 glorious years. Then came March 5th, 2004. HELL DAY!!!!!
I am currently having 3-5 attacks a day. ALWAYS when I try to sleep and when I'm awake the can come at any time......
After hoping, praying and insisting (read being in denial) that I had a sinus infection for a few weeks, I finally went to the doctor to hear the inevitable....
He prescribed Predidsone to try and stop the episode and put me back into remission. Has anyone had any luck with Predidsone?
He also gave me Imitrex in pill form. Is it just me or the pill form take to long to work. Seems by the time it gets in my system, I'm already full-blown and as we all know, at that point nothing helps........Would Imitrex nasal or injectable help more?
I can sleep for 45 minutes before the demon wakes me up. I go insane for 1-3 hours, then fall back to sleep only to have the demon wake me again in 45 mins.
I feel dead on my feet all day, every day!!
My doctor never mentioned O2.........???
Hoping everyone can get some sleep.
Kevin
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During those times when it's absolutely, positively unbearable, just remember..........
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BobG
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Re: Hello......Help......Please.......
« Reply #1 on: Apr 18th, 2004, 6:13am » |
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Hello Kevin. Welcome. Sorry to hear a new cluster has started.
Many folks here have used Predidsone to break a cycle. It may take a few days and I hope it works for you.
For sleeping, you might try Dramamine before bed. It keeps you from entering the REM sleep mode where the beast lives. Or, many have reported having good results with melatonin before bed. Have you tried sleeping with your head elevated? Or even sleeping in the La-Z-Boy?
Most people say the Imitrex in pill form is to slow. See if you can get the injections. And read the 'imitrex tip' button on the left side of your screen. It can save you a bunch of money, make your supply last 2 - 3 times longer and be easier on your heart.
Your doc didn't mention O2.....maybe he doesn't know about it. You may have to tell him.
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Stay stressed. Never relax. Never sleep. Ever.
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snyder
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Nothing can hurt me as much as my head.
  
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Re: Hello......Help......Please.......
« Reply #2 on: Apr 18th, 2004, 6:18am » |
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wingnut04,
Wow, finally somebody else is here from Michigan. It's been so lonely and isolated "geographically." There are wonderful people here and you'll get all the helo you need that's for sure.
For my current cycle that is almost over, and it is the worst one I have ever had, I was saved by verapamil, zomig nasal, and O2. O2 can beat down so many attacks before they get off the ground if you act quickly enough and there aren't eny side effects. The zomig nasal is super fast for me at aborting an attack at any stage and I don't have that feeling that I have been hit by a medium sized bus afterwards like I get from imitrex. I couldn't take melatonin, it made the attacks worse. I doubled up, and them some, on vitamin Bs (B50s) and on magnesium.
I have never heard of using dramamine as BobG has mentioned above. I wish I had heard of it weeks ago, I would have given it a shot. I certainly will next time.
I also found this time that getting cold helped during the severe attacks. It seemed to redirect the blood flow away from my head to other parts of my body and ease the pain.
I have not been to bed since sometime in February. No lying down! I sleep in a chair. It has reduced the nighttime attacks significantly ... I mean big time. If I had heard of the dramamine mentioned above by BobG perhaps I wouldn't be longing to lie down so much these days.
No onions, no garlic, no citrus, no soda, and no getting too warm at any time.
Bill
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| « Last Edit: Apr 18th, 2004, 6:29am by snyder » |
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wingnut04
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Re: Hello......Help......Please.......
« Reply #3 on: Apr 18th, 2004, 6:28am » |
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Thanks Bob and Bill.............
I will ask the doc about the O2 and Zomig or Imitrex injections on Monday...........
Glad to be your fellow Michigander.......
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Woobie
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Re: Hello......Help......Please.......
« Reply #4 on: Apr 18th, 2004, 10:25am » |
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on Apr 18th, 2004, 6:13am, BobG wrote:
Most people say the Imitrex in pill form is to slow. See if you can get the injections. And read the 'imitrex tip' button on the left side of your screen. It can save you a bunch of money, make your supply last 2 - 3 times longer and be easier on your heart.
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Maybe instead of the "stat dose" injections - you could ask for the viles of imitrex - one vial can be split into 2-3 shots - and a lot easier than that imitrex tip.
My husband used to get those stat dose pens - and the vials are way easier - you're taking less - and doing the same... easier on the heart.. and the pocketbook.
And - about O2 - if your Dr doesn't know about it - just print out the "oxygen info" button and take that to your him/her.... so that he/she prescribes you the right stuff. Our Dr at first ordered him the nose cannules - and that was a pain to get that fixed. He didn't have the regulator ordered that had the flow high enough either. You need 10 - 15 lpm and the regulator he had on there only went up to 8 or somthing.
I'm rambling - (i'm on prednisone myself right now.. LOL)
Hope this helps - Welcome home!
tina 
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Karla
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Re: Hello......Help......Please.......
« Reply #5 on: Apr 18th, 2004, 10:32am » |
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Imitrix nasal spray works almost as fast as the injections. Usually in 10 min it kicks in. But you can't split your doses up like you do with the injections. But I am a big baby for needles. Definetly check out the o2. It can be a life savor!!!
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Karla
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BobG
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Re: Hello......Help......Please.......
« Reply #6 on: Apr 18th, 2004, 10:36am » |
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on Apr 18th, 2004, 6:18am, wsnyder wrote:
I also found this time that getting cold helped during the severe attacks. It seemed to redirect the blood flow away from my head to other parts of my body and ease the pain.
Bill |
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Yep! Picture this.......middle of the night, winter, 35 degrees outside, you're out standing barefoot and in you skivvies on the cold cement patio.............with an ice pack on your face............and a cup of coffee........
and feeling good.
The neighbors say you should be locked up and protected from yourself.
But, to us, it's just another clusterday of life.
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snyder
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Re: Hello......Help......Please.......
« Reply #7 on: Apr 18th, 2004, 11:05am » |
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on Apr 18th, 2004, 10:36am, BobG wrote:
Yep! Picture this.......middle of the night, winter, 35 degrees outside, you're out standing barefoot and in you skivvies on the cold cement patio.............with an ice pack on your face............
But, to us, it's just another clusterday of life. |
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I got you beat on that, BobG! I was outside, 5 degrees above zero, in my skivvies and socks, icepack, O2 tank and cart, standing in the snow. No neighbors within eyeshot or perhaps I would have been taken away one of those nights. But ... it sure did help!
Bill
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HypnoticFreddy
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Re: Hello......Help......Please.......
« Reply #8 on: Apr 18th, 2004, 1:19pm » |
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Definitely tell this neuro about oxygen. Bring in some literature from this and the OUCH website. Make sure it mentions the correct equipment (the high flow rate regulators and non re-breathing masks).
Me, personally, I would not like it if the doctor did not know or mention oxygen therapy, or using Imitrex injections vs the pill. Might need to try another doc.
The burden that CH'ers should have to educate doctors still seems absurd to me, but unfortunately, due to the difficulty in getting appointments with these particular specialists...... I know we do it, but c'mon!!
-Scott
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UN_SOLVED
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Re: Hello......Help......Please.......
« Reply #9 on: Apr 18th, 2004, 3:53pm » |
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I just wanted to add:
Do your Prednisone exactly as directed.'
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Superpain
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Re: Hello......Help......Please.......
« Reply #10 on: Apr 18th, 2004, 5:00pm » |
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Prednisone worked for me.
yes, imitrex injections are the way to go!
You MUST get some O2... It's a life saver.
Try melatonin at night.
Try magnesium supplements too.
Sorry to hear you've joined our club. But you'll find more help and valuable info here than anywhere else. Arm yourself with information for your next visit to the neuro and you should be able to find relief.
Hopefully the pred will work for you, but in the meantime O2 and imitrex injections are, or will be, your new bestest friends!
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Chris
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pubgirl
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Re: Hello......Help......Please.......
« Reply #11 on: Apr 18th, 2004, 6:56pm » |
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Sorry Kevin
Didn't realise this was here and posted on your other thread on "Getting to Know Ya" (the one Lizzie found and moved-well done Lizzie for spotting it)
Welcome again!
Wendy
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| « Last Edit: Apr 18th, 2004, 6:57pm by pubgirl » |
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wingnut04
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Re: Hello......Help......Please.......
« Reply #12 on: Apr 20th, 2004, 1:28am » |
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Well, Thanks to everyone for their awesome suggestions. Bob and Wsnyder.....Loved your "cold stories". I remember before I went into remission I would go into my bedroom and crank the window a/c all the way up.
Unfortunately, Last night (Sunday) I ended up in the hospital. Even though I've been a clusterhead for some 10 years, I was in remission so long it's kinda like it's all new to me again. I was pretty certain all they would do at the hospital make the pain go away and send me on my way. But at my wifes insistance I went any way. And yes, that is exactly what they did.
First O2 for about 25 minutes. When that didn't work they pumped Reglan into my I.V. 10-15 mins. later I was ready to go home. Still had a dull ache but definately bearable. Got home and felt a couple swords starting to jab so I popped an Imitrex and that time it helped. I was able to sleep for about 1 1/2 hours then woke up BUT NO PAIN........What was strange was my pillow was absolutely soaked with sweat. I mean I even looked around in a sleepy daze for a glass of water that must have been spilt on my pillow..... Same thing happened again 2 hours later?????? But NO PAIN!!!! Maybe due to the meds????
Anyway today I was back in the Dr.'s office. decided to extend the Predinsone and start Verapamil with Cafregot (sp) for pain. I have used those since I started this episode and they seem to work well. Only problem is I have been on Biaxin for sinus and I was told at the drug store that if I mix those two "bad things will happen" Sooooo no Cafregot till tomorrow. Really, really hoping the demon doesn't strike tonight. I work nights and am at work now, so at least i won't be sleeping....
Oh I do have some Reglan in pill form but, the Doc at the hospital even told me it is only effective in I.V. form but, "You can try it"???? So that's all I have with me tonight.
Inderal worked GREAT for me last time. Put in and kept me in remission for 7 years. Going with Verapamil this time due the side affects with Inderal. Most importantly the fact that it restricts blood flow to "Mr. Happy". One side effect myself OR my wife don't care much for!!
Well I've a lot of good things about Verapamil so I guess time will tell.
Sorry for rambeling and thanks again to all!!!!!!
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During those times when it's absolutely, positively unbearable, just remember..........
Someone, somewhere, is having a harder time than you!!!
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pubgirl
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Re: Hello......Help......Please.......
« Reply #13 on: Apr 20th, 2004, 2:45am » |
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That Reglan prescription has me foxed. Did they tell you what they were giving it to you for?
and also did they give you 02 at high flow rate? If it was standard flow rate e.g. 4-5 l/minute it won't work anyway.
Good luck with the Verapimil, it has worked very well for a helluva lot of people when the right dosage ;evel is achieved (it also may take a while to work so don't expect instant miracles)
Wendy
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| « Last Edit: Apr 20th, 2004, 2:47am by pubgirl » |
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wingnut04
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Re: Hello......Help......Please.......
« Reply #14 on: Apr 20th, 2004, 8:21pm » |
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Hey Wendy
They gave me the Reglan to abort and attack. I have read that it is primarily for gas/stomach problems????
My Doc was just as confused. Although it did work in I.V. at the hospital???? Those went to the back of the shelf after I got the Cafergot.......Also a friend just hooked me up with 18 Imitrex. So the Reglan will likely end up in the trash............
I can't say how they gave me the O2 at the hospital. I'm not real familiar with it yet. I do know it was with a non-rebreathable mask and it sure was blowin' hard???
PF since Monday around noon!!!!!
Talk at cha'
Kevin
GO RED WINGS!!!!!!!!!!
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During those times when it's absolutely, positively unbearable, just remember..........
Someone, somewhere, is having a harder time than you!!!
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wingnut04
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Will Kryptonite Help??
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Re: Hello......Help......Please.......
« Reply #15 on: Apr 20th, 2004, 9:33pm » |
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Wow......crazy, but as I'm reading posts, I get a scare. Just got the "twinge" in my jaw. Back by the wisdoms. Jumped, leaped, ran knocked things over to get to the Cafergot.........VERY mild dull ache for maybe 5 minutes, then ALL GONE!!!!!!!
Cafergot or shadow? What do you guys think.
Complete PF since Monday noon (until the above)
Kevin
GO RED WINGS!!!!!!!
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During those times when it's absolutely, positively unbearable, just remember..........
Someone, somewhere, is having a harder time than you!!!
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