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Sheesh, What a day! (Read 1947 times)
Weatherman
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Sheesh, What a day!
Oct 8th, 2009 at 9:56pm
 
Man, this has been the strangest cycle ever! I'll be repeating some things I've said in other posts but it's been a hell of a day. I really need to vent.

I've had CH (episodic) for around 20 years now. Started in my late 20s. It came every year, like clockwork, always in late Fall. Lasted for 2 to 3 months then gone. 3 to 5 CH's per day lasting 15 to 45 minutes each. K-4's to K-8/9's. Night hits. The usual...

Then my last cycle skipped a year. This never happened before. When the time came and it didn't show up I was very hopeful. Then the beast showed up the next year. Even though the cycle was a year late, it was a typical cycle. I got better treatment from my Doc. that time around plus I found this site along with it's great help. I managed that cycle better than any cycle before because of this site and many of you!   Wink

We'll, I'm in cycle again (about 4 weeks now), this time after a 3 year break. But this cycle is anything but typical. When I felt the tell tale signs it was coming, I started the same treatment that helped so much last time. At first, it seemed to be helping again. I was encouraged. I didn't even stock up on O2. BIG MISTAKE!! Recently, a few doozy's managed to break through, but only one at a time, every few days. This has never happened before but I was handling it. Lots of shadows but not many getting through. I was still encouraged. I still thought it wasn't bad enough for me to get O2. BIG MISTAKE!!

Yesterday was a great day! No CH's and for the first time in a while, no shadows! I was very optimistic! BIG MISTAKE!!

Then came today. My day started with a phone call at 5:30am...5:30am! I usually wake up at 9. Wrong number! I couldn't get back to sleep. Having some experience with CH's starting when your sleep cycle is interrupted, I became worried. I finally dozed off at about 7am. Sure enough, 7:30am, the beast comes to visit! K-6 but with an ice pack and breathing techniques, it's gone in 30 minutes and I fall back asleep. 8:45am, he's back! This time K-8 but again, 30 minutes and gone. Pretty typical CH's for me. This time I stay up to start my day. Heavy shadows lingering big time & I'm feeling pretty crappy. At 12:30pm I leave for work, still in haevy shadows. Before I get there, while driving, the beast returns again & hits hard. By the time I get to work I'm in full blown K-8+ with no help in sight...no abortive. Well, it's ok right? My CH's last no more than an hour right? I don't have to go on the air until about 4pm. I'll be fine right? WRONG!!! For the first time ever in 20 years, the CH won't stop! 2pm passes..3pm..4pm...still kicking my ass! For the first time ever, I have to leave work because of CH. I can't perform my duties at all! I leave, still getting hammered. Called my Doc. on the way home and got an appointment for 1st thing tomorrow am so I can get my O2...finally. (what an idiot! Tough lesson learned!) I continued to get slapped until about 8pm! A nearly 7 hour K-8 CH! Never had anything like that before! Now it's 9:30pm and I'm still in heavy shadows, fearing the worst of course. You should see me! I have gotten a swollen and droopy eye before but this time I look like I was in a prize fight, and lost bad. But the other guy only threw left hands at the right side of my face for about 10 rounds. My eye is nearly swollen shut. My face is swollen and red. Hell, even my ear looks like I was in one of those ultimate fights! And I have to go on TV tomorrow? Oh boy!

What a day!! What the hell was that all about??? Any opinions? Do you think it was just being awakened at 5:30am?  Or was it just the beast letting know who's boss? Like I said when I started this long-winded vent...what a strange cycle indeed! Obviously I'm not very encouraged any more. O2, here I come!

Thanks for listening all. I really appreciate it! Wish me luck! PF wishes to all of you!!!
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Marc
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Re: Sheesh, What a day!
Reply #1 - Oct 8th, 2009 at 10:36pm
 
You asked for an opinion.

High flow O2 should have been in your arsenal before your upcoming appointment - and you knew that.

It's easy for all of us to get complacent when things are under control, but there is a reason that so many people yell "O2" when new folks show up around here.

Hope you have better days ahead soon.

Marc



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« Last Edit: Oct 8th, 2009 at 10:37pm by Marc »  
 
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bejeeber
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Re: Sheesh, What a day!
Reply #2 - Oct 8th, 2009 at 11:10pm
 
Well your post will help strongly encourage others to have those contingency abortives in place, and thats a good thing at least.

I've had a couple of those really long K-8s like you describe over the past 25 or so years, but I don't know if more than maybe one of them lasted 7 full hours - that BLOZE!!!  Angry

The first one I had was when in peak cycle after I ignorantly went out and had a couple beers....

The other 2 were more like "breakthrough" hits that broke through the meds/O2 after weeks and weeks of being suppressed.

So my (possibly half baked, I admit) theory is that the beast just basically comes on with a raging vengeance if he can break through after having been suppressed, whether suppressed with meds, or with more benign Kudzu/Taurine/Melatonin supplements such as your regimen.

And your 5:30 wake up call was probably just the opportunity the beast was waiting for...

Weatherman, do yourself a favor and get some frikkin imitrex injections immediately, so if the O2 fails you, you have a contingency for that!!!  Shocked



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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Weatherman
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Re: Sheesh, What a day!
Reply #3 - Oct 9th, 2009 at 12:24am
 
Thanks for the Trex idea bejeeber. but I'm one of those with a heart condition and can't take it. I tried it once about 7 years ago and it nearly killed me.

And Marc, I hear you on the O2 but I really didn't know I was going to need it or I would have had it. I thought I had the magic combination to keep the beast at bay. I sure as hell know it now though. It's a mistake that will NEVER happen again!  Thanks!
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Racer1_NC
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Re: Sheesh, What a day!
Reply #4 - Oct 9th, 2009 at 12:46am
 
Makes no difference if I haven't had a twinge in months.....I still have a full tank in my vehicle and at home.
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Lottie
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Re: Sheesh, What a day!
Reply #5 - Oct 9th, 2009 at 5:32am
 
Ever since I got a DX, after 5 long months of having to ride out every single attack, and I got my O2 working (BIG thanks to this site for that!) I will always make sure to have O2 at hand.

Have you ever tried using energy drinks to help abort an attack? It does help me when I can't take O2 along and I want to spare my Imitrex.

Hope you get your O2 set up real fast!

Lottie
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grace
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Re: Sheesh, What a day!
Reply #6 - Oct 9th, 2009 at 6:59am
 
OMG Weatherman...I'm choking up after reading this one.  I have no advice because I'm way too new to this, but my heart sure goes out to you!!
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Chad
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Re: Sheesh, What a day!
Reply #7 - Oct 9th, 2009 at 7:23am
 
Weatherman,

I learned this lesson last Thursday when I was 4 days PF from the end of my cycle.  Well, that bastard visited going into work and guess what.  I didn't have my abortive (trex injections).  Big mistake!  I had to leave immediately and fight this garbage while driving home.  One eye completely closed.  I may as well been a pirate with a patch over my right eye.  As soon as I got home, the beast left so I went back to work for the second with my trex and sure enough he hasn't returned since.

What we all learn from these experiences is to have our arsenals loaded at all times.  You never know when the next hit is coming.  That beast changes courses sometimes just to F with us.
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wip5150
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Re: Sheesh, What a day!
Reply #8 - Oct 9th, 2009 at 11:38am
 
Sorry to hear this Weatherman.  I've been battling CH's (episodic - like you) for about 20 years now and as I'm getting older, the beast seems to be changing on me as well.  The last cycle I had before this one (two years ago) was the shortest I had ever had (only four weeks).  But, I will tell you, it was also the most painful and intense one I ever had.  By my recollection I had two 6-8 hour Kip 8's along with the VERY heavy shadows you described and nothing I did could kill those MF'ers.  Not 02, not Trex, nothing. 

On the bright side, it was a shorter cycle by at least two weeks than any previous cycle.  It seems as I get older the length of the cycles is shorter and the length between cycles is longer.  The downside is that the pain seems MUCH more intense during the cycle. I think it's a fair trade-off but you'll have to ask me when I'm in my "headache room" in the basement rocking back and forth for the fifth straight our battling the beast.  Wink

Best wishes on booting the beast.
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Cathi_Pierce
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Re: Sheesh, What a day!
Reply #9 - Oct 9th, 2009 at 1:56pm
 
Weatherman,
That's how it is around here.... a little tough love, a little encouragement, LOTS of experience!
Those who are episodic have tendency to stockpile their own artillery when out of cycle..coz, truth be told, noone knows when the beast is gonna choose to barge in on your life.
I'm sorry Trex is out of the question for you. We NEED our hearts to work well for our continued success. Please discuss this with your Dr today, but, most of all, as many here have stated, get your 02.....and then, if needed get the mask and ask for help here.
Most everyone here knows how you feel-and they don't want you to feel like that ever again!
I hope today is a better day.....

BTW-Is this winter going to be as hard on the PNW as last winter was??? Just askin!
PF  wishes headed your way,
Cathi Wink
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Weatherman
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Re: Sheesh, What a day!
Reply #10 - Oct 9th, 2009 at 3:28pm
 
God bless a good Doc. and good insurance. Saw the doc. this morning and went to pick up my O2 before work. Using their crappy rebreather but got the good one on the way. Their regulaters only go up to 15 lpm's but got a better one on order. In other words, I have enough to get me through now and have even better equipment on the way!

Heavy shadows so far today but no CH so a MUCH better day than yesterday. Still a little swollen but not bad enough to keep me off the air. Got my O2 right here next to me! What a beautiful sight!

Thanks everyone for the kind words and kicks in the butt. I needed all of it! I'm on the bandwagon! This will never happen to me again. I will ALWAYS be prepared from now on....PERIOD!  Wink

Lottie, Yes, I too use energy drinks and take a Taurine supplement. Nothing was touching that beast yesterday! O2 might have worked but of course, the dumb weatherman didn't have any.

Cathi, There's no way to know for sure how your Winter will be like but there is a weak "El Nino". That usually leads to a drier and somewhat milder Winter for your area...usually. Good Luck!

Thanks again all!! PF wishes!
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Marc
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Re: Sheesh, What a day!
Reply #11 - Oct 9th, 2009 at 3:56pm
 
Outstanding news!
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Callico
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Re: Sheesh, What a day!
Reply #12 - Oct 9th, 2009 at 4:21pm
 
Glad you have a good Dr to work with you.  I thinkyou have learned a valuable lesson.  At the first sign of an impending return get the O2 and have it ready.  I'd rather pay for having it and not needing it than pay because I don't have it!

Glad things are looking up.  Now how about getting us a few 70 degree sunny days up here in Chicago. Cheesy

Jerry
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Weatherman
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Re: Sheesh, What a day!
Reply #13 - Oct 9th, 2009 at 6:20pm
 
Callico wrote on Oct 9th, 2009 at 4:21pm:
  Now how about getting us a few 70 degree sunny days up here in Chicago. Cheesy

Jerry


Coming right up! The delivery will be a little slow though. Should get there by late May. Is that ok?  Smiley
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Callico
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Re: Sheesh, What a day!
Reply #14 - Oct 9th, 2009 at 10:19pm
 
Gee, What a guy!  You're no better than Tom Skilling!  (I really doubt you could be worse though.)

Jerry
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Weatherman
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Re: Sheesh, What a day!
Reply #15 - Oct 9th, 2009 at 10:28pm
 
Just got home from work to find my new O2ptimask waiting for me. Was feeling a little CHy so I hooked it up and tried it out. WOW! What a difference! If you use O2 and don't have one of these masks, you need to get one! It's like night & day compared to the non-rebreather mask I got from the O2 company.

Good stuff, thanks!   Cheesy
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bejeeber
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Re: Sheesh, What a day!
Reply #16 - Oct 9th, 2009 at 10:30pm
 
Hey weatherman, I'm regretting my crack about the imitrex injections, now that I realize you can't take them.

Man you got hit so hard - I sure hope that sort of thing is history for you now, best of luck with the continued fight!
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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Weatherman
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Re: Sheesh, What a day!
Reply #17 - Oct 9th, 2009 at 10:54pm
 
No problem bej.. Had a pretty good day today, thanks. It's amazing how happy you are when you just feel ok during a cycle. When I'm not in cycle, I feel ok a lot but never think about it. Well today, after yesterday's hell, feeling ok was the most wonderful thing ever!
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Guiseppi
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Re: Sheesh, What a day!
Reply #18 - Oct 10th, 2009 at 10:40am
 
I've tried to explain the feeling to my wife......right after you've beaten the beast down with the 02.... I get this incredible feeling of euphoria I can nly compare to a narcotic high. Those that have never felt a CH attack, will never understand how incredible that moment is! Glad your quiver is full of arrows again. Wink

Joe
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