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New To the site, old to the dance! (Read 1103 times)
O2 Mommy
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Harrisonburg, VA
Gender: female
New To the site, old to the dance!
Sep 14th, 2011 at 2:42pm
 
Hello!
I am new to the site, but I have been a cluster sufferer since 2003 at the age of 24. I am a female and a non-smoker, so I seem to be far from the norm (if there is one).
My first attack came in August and that seems to be the devils month of choice for me. Coincidently or not my first attack was within in a week of me receiving a blow to my left jaw by a horse's head. It didn't knock be out (hard head I guess), but I did receive significant brusing to my jaw that was noted by my dentist a month and a half later. That was my first cycle and I was PF for a few years before they came back annually. The only other time that I have been PF for more than a year is when I was pregnant and nursing. As soon as I weened they were back.
I live in a small town near Harrisonburg, VA and no one here has a clue of course. A neurologist told me about cluster headaches, but had never treated anyone with them. I saw a doctor in Richmond and he gave me lots of pharma drugs over the years. He mentioned O2 as a last result, but a few years ago after a very drugged cycle on hydrocodone (used at bedtime to weaken the headache when it came) and lyrica (to abort the cycle) I decided I was done with the meds. I contacted my family doctor and taught him about clusters and O2 and he now gives me the script when they hit.
Since I quit nursing and got my first attack back the individual attacks seem to be weaker, but I am now in my 3rd cycle since December of 2010. I have never had more than one a year and they have usually hit in August, but have been as late as October. Does anyone think that the barometric pressure and the change of the season has anything to do with the beast??
Thanks for listening! I look forward to supporting some of you and receiving support as well. I hate being a young mother that has to puff on oxygen in front of my daughter who is almost two! Most of the attacks come at night, but I am still getting exhausted and am having more during the day then I ever have.
My best to each of you!!
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Guiseppi
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San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: New To the site, old to the dance!
Reply #1 - Sep 14th, 2011 at 4:41pm
 
Welcome to the board. Have you ever tried a prevent medication? Verapamil being the standard first line prevent. I use lithium, at 1200 mg a day it blocks 60-70% of my attacks when I'm on cycle. Might cut down the number/intensity of your attacks.

And don't sweat the kids too much. By the time my girls were 12 they could rig a reg to an E-Tank! I think it lessens the impact the beast has on THEM when they feel like they can help.

Female..non smoker.....clearly you're faking CH! Grin Stick around you'll find we have a LOT of female...non smokers..on the board. The medical community hasn't caught on yet that a woman   plus headache     does not ALWAYS equal migrain. Wink  We still have a long way to go in educating our medical profession.

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My guess is you've already read this link but a good review to make sure you get the maximum benefit from your oxygen.

Welcome home.

joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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B.Baer
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Northeast Pennsylvania
Gender: male
Re: New To the site, old to the dance!
Reply #2 - Sep 14th, 2011 at 7:38pm
 
Welcome,

I've dealt with the Beast, the worst part of 20 years, great deal of information and support here.

Relax ... read ... and ask questions, more than a little knowledge on this forum.

All the best,
Baer
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Barry Baer  
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wimsey1
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MA
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Re: New To the site, old to the dance!
Reply #3 - Sep 15th, 2011 at 8:34am
 
Hey there, and welcome.  Well first off, the horse head hit almost certainly didn't cause your CHs but the trauma may have kicked off the cycle. Or maybe you were going to cycle anyway. We have noticed CHs are very sensitive to seasonal changes...and temperature...and sleep patterns...and alcholo...and a dozen other things. While some have questioned whether or not geographic location has any role to play, which it seems it does not, barometric pressure absolutely can be listed as one of the potential warning signs a cycle may be imminent. The narcotic route, as you found out, is useless to us and causes its own problems. A good preventative (verapamil, lithium, topamax, even olanzapine) is much better, and O2 (with the right technique and equipment) is the cat's meow. don't hesitate to ask questions, best of luck dealing, and God bless. lance
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Monty317
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Re: New To the site, old to the dance!
Reply #4 - Sep 15th, 2011 at 10:37pm
 
Hello,
I am new to the site but have been suffering from CH for 13 years. Its funny. I still remember the very first one I had. Most of you on here probably do too.  Its great to FINALLY find a site that can answer my questions. I've done much research on the topic, most of it the same info over and over again. But to connect with people that know EXACTLY how I feel is a bit encouraging. This is definitely a life altering condition. It has ruined many holidays, birthdays and everyday in between. Oddly enough, I've learned to live with them. Not that it means they suck any less.
I've been on verapamil for 6 mos. now. Most pill forms meds dont seem to seem to work fast enough, so i mainly rely on O2. I've also found that making a journal of "triggers" is most helpful. Got to learn your body. Everyone is different.
Anyhow, I look forward to sharing the same hell as the rest of you. Hey, at least we're not alone.
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B.Baer
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Northeast Pennsylvania
Gender: male
Re: New To the site, old to the dance!
Reply #5 - Sep 15th, 2011 at 11:21pm
 
"Preachin' to the choir"...  Wink

We're here for you and yes, we've all been there, and apparently will again... and again... and again...  Cheesy

Near 20 years and I ain't dead yet....  Wink

If nothing else, we are a tough lot.....

All the best,

Baer
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Barry Baer  
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Guiseppi
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San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
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Re: New To the site, old to the dance!
Reply #6 - Sep 15th, 2011 at 11:51pm
 
Welcome to the board Monty, glad you found us. Make no mistake, misery loves company! Wink Knowledge is your best ally, start reading and asking and reading and asking....and repeat!

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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