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Merry Christmas (Read 1076 times)
playsCbricks
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Merry Christmas
Dec 24th, 2012 at 1:48am
 
So glad yet so sad that i found this site.  Visited once 8 years ago, never joined.  Decided now, more for the camaraderie.  reading thru some of the descriptions had me in tears just realizing that others know the pain, the dance and uncertainty.  I always knew I wasn't alone, I've just never met anyone personally or realized how similarly we all deal with it.
I am currently 39 years old and am just now finding out how lucky I am.  it was about 12 years ago that I was struck with a severe headache that woke me up in the middle of the night.  it lasted maybe 30 mins.  the next night same time, longer duration and more pain.  finally the third night i swear i had a tumor the size of king kong actively growing behind my right eye.  with a newborn at home and not wanting to disrupt my family i drove myself with much difficulty 40 miles to the ER to only find out that they thought i was pill seeking.  after following up with my GP he immediately diagnosed me with CH.  He offered some insight and a Rx for imitrex.  The imitrex never got use and consequently tossed since there were no additional following.  A few years later i went thru another set and immediately tried imitrex with varying results.  now some 12 years later this is easily the worse set i have ever had.  in the past i would only get them in the middle of the night and only once per 24 hours.  this set sometimes 3-4 per day ranging from kip 4 during the day to kip 8 or 9 at night.  right now we are on day 7.
6 years ago i went to nursing school and received my RN license.  i live just outside Cleveland, Ohio and have access to some of the best neurologists in the world, yet like a typical male compounded by being a nurse i have yet to seek their profession help. I know of all the research, different treatments and such from being in the medical field.  maybe i haven't looked for professional help more for the fact that i never really felt they were a problem.  the cluster before this should have told me different (2 weeks of consistent nightly episodes of kip 6-7) but i was still too stubborn.  maybe this cluster will push me to my limit.
I work nights as a nurse and almost wished for an episode while at work so that i could try O2 therapy.  i haven't been so "lucky".  i could easily go to work during an episode and try O2 therapy but who wants to travel during one.
i know i'm rambling but it's 1:30 am and i'm at the point of being scared to go to bed; knowing i will wake up in an hour with my head trying to cleave.  I've been on the site for a few hours now and i guess it's time to face the inevitable and get it over with.
- currently only use Imitrex, will be starting vitamin and water therapy right now.
PS one thing i have yet to see anything on is bowel issues during an episode.  i always have a bowel movement during the first part of an episode.  probably TMI but I'm a nurse and wanted to know if anyone else has this.
Merry Christmas to all, and to all a PF night.
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Potter
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Re: Merry Christmas
Reply #1 - Dec 24th, 2012 at 8:08am
 
Yep my temp. skyrockets,  sweat like crazy,  feel hungry,  gotta poop,  and snot shoots outta my nose like old faithful.

                 Potter
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Guiseppi
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Re: Merry Christmas
Reply #2 - Dec 24th, 2012 at 9:17am
 
The BM thing is mnore common then you'd think! I always assumed it was my body trying to reject anything that might be causing the pain! Cheesy

Look into melatonin, many can avoid the wake up hits using this. Start with about 9 mg., 30 minutes before bedtime. You may have to increase it, if it doesn't help after a few days, decrease it if you feel like a zombie and can't wake up in the morning. Some go as high as 18 mg to get relief, some have combined the siustained release with the standard release to get them thru the  night.

Glad you stuck your head in. Any chance you could "borrow" an E-Tank for the night? One with a push button, free flow valve on it? The first time you abort an attack in about 6-8 minutes, just by huffing on oxygen, you'll see why we push it so hard around here.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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playsCbricks
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Re: Merry Christmas
Reply #3 - Jan 11th, 2013 at 8:01pm
 
I've tried the melatonin and high doses of vitamins for the past few weeks to no avail.  They are getting less frequent and less painful but that typically happens.  we are now on day 25.  went to my doctor on monday past and he prescribed verapamil and gave me some samples of relpaks.  relpaks doesn't seem to be as fast acting as imitrex and we'll wait to see what the verapamil does. 
i always tell myself i am going to go into work when i get one and try the O2 thing but as everyone knows the last thing you want to do is go for a drive, even if someone else is driving. and i doubt i could borrow one, but it may get to that point of asking my boss.
it was also interesting to see the nickname "The Beast" as that's what i've always considered what i was fighting.
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Skyhawk5
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Re: Merry Christmas
Reply #4 - Jan 14th, 2013 at 12:42am
 
Imitrex pills are not good CH treatments, we need Imitrex injections or inhalers.

The longer we wait with any abortive including O2, the less likely we will stop the attack. Minutes matter. And we must use the O2 with a good mask with the bag on it at up to 15LPM on the regulator.

Don't count on any Dr, to know this, CH is rare so few ever see a Clusterhead.

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