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   Author  Topic: another new gal here  (Read 520 times)
enterre
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another new gal here
« on: Feb 14th, 2008, 4:26pm »
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hey, i'm so happy to have found this wonderful website.  here's my story:
 
the first time i had an episode was when i was 16.  i had no idea what was going on, and my dad took me to the ER, just in time for it to go away.  they gave me tylenol.  over the last 12 years, i've only had these crazy things once in a blue moon.  and only one at a time.  i'll go months without another one.  
 
and then all of a sudden two nights ago i wake up in the middle of the night with one.  and then again last night.  i hadn't had one in 3 years.  i got really concerned when i had the second one, because i've never had them that close together.  
 
a few years ago, i researched it online and decided it was probably ch, because my symptoms were nothing like the ones listed for migraines, and nearly identical to the ones for ch.  i've never had a proper diagnosis because they've never came on that often.  but now i'm gonna try to go to the dr.  if they get worse i'll go crazy.  
 
they always happen the same.  i wake up in the middle of the night and i know it's coming on.  it feels like my brain can't get any oxygen.  and then it just starts pounding like mad.  and then splitting, stabbing, exploding pain.  i can't lie in bed, cause it seems worse.  and i pace the floor and kneel on the ground and get up and pace, then rock back and forth.  all the while grabbing my head trying to ease the pain for just a moment.
 
i used to be able to stop them before they started by getting up immediately when i woke, start taking deep breaths, and drink a glass of water.  but i had to hurry or i'd miss the window.  but i was so tired the last two nights that i didn't make it in time.  last night i breathed deeply through my mouth and desperately tried to stay calm.
 
before, they used to last 30-45 minutes.  but this time they've only lasted 15 minutes.  (thankfully)  i told my husband it was the longest 15 minutes of my life.  i fear that i'll get another one tonight.
 
at least you guys have helped me feel like i'm not alone, and now i can have a plan.  breathing, water, energy drink.  hopefully they won't get worse.
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Jonny
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Re: another new gal here
« Reply #1 on: Feb 14th, 2008, 5:12pm »
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Welcome aboard, sorry you have to be here!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.

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Re: another new gal here
« Reply #2 on: Feb 14th, 2008, 5:12pm »
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A solid diagnosis by a qualified neuro is still your best bet, you always want to exclude other possibilities, although you do sound like you're getting clusters.  
 
Since you are getting night time hits you may want to try melatonin. It is an over the counter supplement available at health food and vitamin stores. It's really cheap! Taken just before going to bed many can avoid the night time terrors. Some get relief immediately, for some it takes several days. The dosing can go up to 12-15 mg before you find relief.
 
Keep some energy drinks on hand, Red Bull, Rock Star, any containing the combination of caffeine and taurine, chug it as fast as you can at the first sign of an attack. Some leave the can open in the fridge so it loses its fizz and you can drink it faster. Many can abort an attack that way.
 
You best bet is to get a doc to prescribe oxygen to you. Read the link on the left for the correct way to use it. I can abort an attack in less then 10 minutes using oxygen.
 
Glad you found us, wishing you a really really short cycle! Smiley
 
Guiseppi
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Superdave
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Re: another new gal here
« Reply #3 on: Feb 15th, 2008, 4:39pm »
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Hi enterre,
I'm new here too, and trust me these guys know what their talking about.  
  Find a good Doctor, if he dosen't listen to you, find another one. It took me 5 years to get a proper diagnosis and I live in Houston TX. where medical facilities are supposed to be some of the best in the world.
 
Glad your here, Sorry your here
Superdave
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Wow! you mean it's just in my head?
caoimhin
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Re: another new gal here
« Reply #4 on: Feb 15th, 2008, 6:06pm »
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Hi
 
A cup of instant coffee, 3-4 spoonfulls in some slightly warm water is a good back up for when theres no energy drinks at hand. it tastes like shit but then who wouldnt eat shit if it stopped the pain!
 
Hope the beast dosnt come knockin too often.
 
Caoimhín
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Re: another new gal here
« Reply #5 on: Feb 15th, 2008, 6:07pm »
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on Feb 14th, 2008, 4:26pm, enterre wrote:
 
 
 
they always happen the same.  i wake up in the middle of the night and i know it's coming on.  it feels like my brain can't get any oxygen.  and then it just starts pounding like mad.  and then splitting, stabbing, exploding pain.  i can't lie in bed, cause it seems worse.  and i pace the floor and kneel on the ground and get up and pace, then rock back and forth.  all the while grabbing my head trying to ease the pain for just a moment.
 

 
Wow that sounded so familiar.  Hi Enterre, welcome to the nuthouse. Definitely keep a log of what your headaches are like: timing, duration, intensity, frequency, take the info with you and get an appt with a neurologist as soon as you can.  
 
The melatonin and caffeine drinks are a good defense against "the beast", but the best abortive treatment for most of us is oxygen at the very first sign of a hit.  Please read, read, read the info here - its a lot - but its invaluable in finding tips and tricks to learning to cope with CH. We've learned so much from each other on improving the quality of our lives and not just dealing or coping with this, but managing it.
 
So sorry you had to find us but very glad you did. You're welcome here.
 
All the best,
Jen
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kcopelin
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Re: another new gal here
« Reply #6 on: Feb 15th, 2008, 10:03pm »
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Welcome home!  Please keep a headaches diary, and print up the CH info for your doc.  It helps alot.  
 
Hang in there!  Melatonin has done wonders for my night time hits-that and benadryl taken before bedtime.
 
There is hope and there is certainly a lot of support and knowledge here.
 
PFDAN
kathy
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