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Re: Thank God I Found this Site... (Read 3345 times)
Linda_Howell
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Re: Thank God I Found this Site...
Jan 6th, 2009 at 10:09pm
 
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I vowed to always be his "warrior" against this disease!


There ya go!!!!!!!  I'm proud of you.   Most of us who suffer this condition would be lost with-out our supporters and you are now on your way to being a great one.


Please.....tell us what any Dr.s have put him on, what worked.  What didn't.  How often he's getting hit.  ALL of it.   Maybe we can help.  Ask questions without reaservations....we're here to help.   That is why this site was created 10 years ago.


Linda Howell
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Hurt people.....hurt people.   Think about it.
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Re: Thank God I Found this Site...
Reply #1 - Jan 6th, 2009 at 10:40pm
 
He doesn't have to suffer through them like that.
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« Last Edit: Jan 6th, 2009 at 10:42pm by N/A »  
 
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Tyson
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Re: Thank God I Found this Site...
Reply #2 - Jan 7th, 2009 at 12:06am
 
Tell Joey that there are others out there just like him.  I started having CHA's at 22 and I'm now 36 as well.  I started using O2 for the first time ever with this episode.  I'm soooo stupid!  I should have been using it all along to abort and save the Imitrex/Relpax/Amerge/etc. 

It only takes me 8 l/pm to get FULL relief within 10 minutes - sometimes less than 5 minutes.  I work in the Medical Field and know that ANY doc can prescribe oxygen - it's easy.  You will then take the script to any med supply store that will teach you how to use the tank.  Simple!  Get a script tomorrow by simply calling your doc, talking to his nurse, and asking for an oxygen script to fill immediately.  An appointment won't even be necessary.  If you have problems - get a new doctor!

I hid a bad episode this time around.  I normally get them every 2 -3 years.  Historically, I have taken Verapamil at 480 mg per day and and managed through them.  This time, I am having what I call "Jumpers" - began on my right side for 2 months and now have jumped to my left side, which are always much more severe.  So now I am dealing withe the left side!  My Neuro is keeping me on the Verapamil and adding Depakote 1000mg per day and started me on Prednisone for 10 days.  Since I began this drug cocktail I have been CHA free and have only experienced 1 or 2 very mild attacks that were taken away with 2-3 minutes of O2.......you can probably get this same cocktail by just talking to your doctors nurse over the phone.

Hang in there!  Feel free to write back.  Support is key.  It's tough to find people to understand what we are going through.
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Linda_Howell
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Re: Thank God I Found this Site...
Reply #3 - Jan 7th, 2009 at 12:13am
 
Quote:
I have been reading that O2 breathing treatments help, he is going to ask his doctor more about that.


if John hadn't posted these links I would have.   Please read them, I implore you.  it could be the best thing that ever happened to him in dealing with this condition of ours.

You're doing a great job, just keep reading  around here and asking questions.

Linda
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Tyson
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Re: Thank God I Found this Site...
Reply #4 - Jan 7th, 2009 at 12:18am
 
Bye the way, Joey sounds just like me.  I'm 6'4" tough, a former pro baseball player, and somebody that you wouldn't expect to be brought to his knees by a "Headache."  We are the profile of this condition.  The more you study them the more you will see that they effect large me, typically blond hair, blue eyed (but not exclusively).  (I am a fall/winter guy as well.)

He needs support, help, and understanding.  His condition is now your condition.  Get him on a preventative med/meds immediately and get the O2 - this will help him get his life back.  Keep Triptans (Relpax, Amerge, Imitrex on hand (I have mixed them for year and have had no problem, but don't recommend it). 

Here's another trick that works for me.  Take a longer acting Triptan (Relpax is my preferred) just before bed.  This gives me a good 6 hours of sleep before the beast wakes me.  Aske Joey how nice it would be to get a solid 6 hours of sleep right now!!!!

Good luck!  I'm here to help if you need it.  "This too shall pass!"
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Linda_Howell
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Re: Thank God I Found this Site...
Reply #5 - Jan 7th, 2009 at 12:36am
 
Quote:
I'm 6'4" tough, a former pro baseball player, and somebody that you wouldn't expect to be brought to his knees by a "Headache."  We are the profile of this condition.  The more you study them the more you will see that they effect large me, typically blond hair, blue eyed


Tyson...this condition would bring ANYONE to his knees.  No matter the size, height, or sport of choice.  They do not affect just large people as you said.  I, as well as women get them as well, although not as great in numbers.  I am 5 feet tall and 97 pounds.  It does no good to profile as medical Dr.s did that in the wayyyyyyy past.

"green eyes, Lionine features, ruddy skin....etc.    Roll Eyes  What a crock huh?   Grin

o.k. o.k. I do have green eyes.   Big deal.

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Jackie
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Re: Thank God I Found this Site...
Reply #6 - Jan 7th, 2009 at 2:24pm
 
Hi Joeys Girl and welcome to the site.

I'm a supporter too.  My hubby Blake has been a sufferer for years.  I can relate to what you're saying. The helpless feeling sucks big time.

It's not easy watching them suffer for sure.  My advice would be to get a plan for what you need to do for him when he's having an attack. Talk it over when he's pain free.  It will help you to stay busy and even though you can't do much it feels better to busy yourself.

Read and study all you can.  Knowledge is power and you will be his best advocate in this.

Hang in there, Sweetie....ask questions and we'll do what we can to help.  This is tough business but you all can do it. 

Good Luck,
Jackie
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Mosaicwench
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Re: Thank God I Found this Site...
Reply #7 - Jan 7th, 2009 at 9:35pm
 
Hello - another supporter chiming in.

I support my Hubby of 26 years (he's had CH for 17+ of those).  My dear was diagnosed while I was pregnant with our child.  I thought I was going to have a child who would never know his father, because I thought that kind of pain was ONLY from something that would kill him.  I remember him writhing and praying and weeping and all the other associated behaviors.

17 years later he's still here, he's highly involved with our greasy teenager  Wink, and he's got the CH beast by the throat.

I can't stress enough how important high volume oxygen treatment can be.  It has changed his life and thus ours as well.  So you have an oxygen tank in your living room - big deal.  Better that than a weeping, writhing, praying-to-die husband on the floor.

There is hope. And when hope dims, there is CH.com and the rest of us to help and create a brighter hope.

You're not alone and neither is Joey.  Ever again.
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Garys_Girl
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Re: Thank God I Found this Site...
Reply #8 - Jan 7th, 2009 at 10:12pm
 
Welcome!  SO sorry you had to find us!  But yes - THANK GOD this site is here.

It is HORRIBLE having to watch ANYONE suffer these attacks - let alone someone we'd gladly suffer these attacks for them so they can have some relief.

The feeling of helplessness can be overwhelming.  For me, finding this site was also a godsend.  I STILL spend huge amounts of time conducting research on CH - because that is the primary thing that makes me feel like I'm doing something.  (Gary has been chronic for three years, and so far is med-resistant, 02 no longer works, he - right now - has no abortives and no preventatives that help and has not had any pain free time at all for almost two years now).

I echo Jackie's advice - talk to him when he's not getting hit and find out what you can do to help or what he needs when he is.  When you get 02, making sure the tanks are set up and keeping an eye on 02 levels so he's sure to hook up to a tank with 02 in it while you're asleep is always a nice thing for your sufferer.....  with Gary, we worked out a system whereby when he's getting hit without talking he can let me know what he needs.

We're always here both to listen and for hugs when you need to vent - and there's lots to learn!

Laurie   Smiley




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« Last Edit: Jan 7th, 2009 at 10:12pm by Garys_Girl »  

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flipperlips
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Re: Thank God I Found this Site...
Reply #9 - Jan 8th, 2009 at 8:47am
 
Hi Amy and welcome to the family.  You've already been given tons of great advice.  Come on in and vent away and ask questions, whatever you need someone will be here to listen or answer.

You sound like you have a great positive attitude and I love that. 

Jen

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Re: Thank God I Found this Site...
Reply #10 - Jan 14th, 2009 at 8:41pm
 
supporters rock !!!!!, we need you all and you mean way more than you think. take time for yourself and hang on in love. Cool
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