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What would you do??? (Read 4165 times)

gus411

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What would you do???
Oct 2^nd, 2009 at 9:45am

Well I'm back and no offense it sucks. I am currently having a very strange cycle. it started with a hit here and there and now 3-4 hits a night. I got my shots got some relpax which works ok and am getting an H oxygen tank. Big problem though... My fishing trip is coming up (5 nights 4hrs. from home) Its an annual trip for the last 7 years. This is the first year my cycle hit on the week before the trip. There are no showers and its just a basic camp. I so depressed I might miss the trip and am very upset with myself. Just wanna jump off a bridge. So what would you do???

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QnHeartMM CH.com Sponsor Offline I AM a Phoenix! Posts: 1783 San Diego, CA Gender:	Re: What would you do??? Reply #1 - Oct 2^nd, 2009 at 9:48am Have you discussed with your MD some preventative medication such as a prednisone taper combined with either verapamil or lithium? The pred will help block them from coming (but you can only take it a short time) while the verapamil or lithium build up to take effect.
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Marc

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Re: What would you do???
Reply #2 - Oct 2^nd, 2009 at 9:53am

QnHeartMM wrote on Oct 2^nd, 2009 at 9:48am:

Have you discussed with your MD some preventative medication such as a prednisone taper combined with either verapamil or lithium? The pred will help block them from coming (but you can only take it a short time) while the verapamil or lithium build up to take effect.

This is the answer you are looking for. A Pred taper will give you a break, but you need to be ramping up on a preventative during that break.

In your place, I would start a simple Medrol dose pack when leaving on the trip. That would give me (maybe not you) a one solid week break.

Marc

« Last Edit: Oct 2^nd, 2009 at 9:55am by Marc »

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gus411 CH.com Newbie Offline Thanks!!! Posts: 23 x0\|stony point\|USA\|\|0\|0\|NY,New_York Gender:	Re: What would you do??? Reply #3 - Oct 2^nd, 2009 at 10:02am I've been on prednisone and had no effect I may try that pack though gotta see if my doc will perscribe it. Would you guys go though or just stay home?
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DennisM1045

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Re: What would you do???
Reply #4 - Oct 2^nd, 2009 at 10:09am

Good advice above.

I'd never let the beast take this trip away from me.

If pred doesn't make sense or doesn't work, call your O2 supplier and see what options they have. There is liquid O2 though I'm not sure if some power source is required to keep it cooled.

Is there any way you can fit an m-tank in your truck? If not you could bring along 10 e-tanks with you (2 hits per tank and 4 hits per night for 5 nights). I know they take up a bit of room but you need to do what you need to do.

As a last resort, see my post in the meds section on triptans as short term prophylactic. There are lots of options here. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

-Dennis-
(edited to add link)

« Last Edit: Oct 2^nd, 2009 at 10:11am by DennisM1045 »

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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gus411 CH.com Newbie Offline Thanks!!! Posts: 23 x0\|stony point\|USA\|\|0\|0\|NY,New_York Gender:	Re: What would you do??? Reply #5 - Oct 2^nd, 2009 at 10:19am Dennis Great post over there. I have relpax so I will try to take them twice a day. and see ho that works as I normally take them at the onset of the beast. Just hate how this runs my life. Its like smoking cigarettes but this I have no control over.
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gus411 CH.com Newbie Offline Thanks!!! Posts: 23 x0\|stony point\|USA\|\|0\|0\|NY,New_York Gender:	Re: What would you do??? Reply #6 - Oct 2^nd, 2009 at 11:12am I'm just scared I guess to go away has anyone been in this situation? And what did ou do?
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DennisM1045

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Re: What would you do???
Reply #7 - Oct 2^nd, 2009 at 11:30am

Lots of clusterheads make this decision all the time. Search around a bit and look for posts on honeymoons and vacations and ... you get the idea.

The decision is not an easy one and there is always fear. Just remember that the pain will come or it won't. What's the worst that can happen? You get hit in the middle of nowhere. I guess I don't see how being home makes that hit any less painful.

Sure, you may share this with some folks that haven't seen it before. But this is you. CH is something that you have to deal with. If you start letting the beast make these decisions for you then you really lose. 1st its the big trips. Then its the mall. Next its work. Where does it end?

Take your weapons with you, trust in them and yourself, kick his ass and have the trip of a lifetime Wink

I want pictures of that record bass or trout or whatever it is your fishing for Cool

-Dennis-

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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coach_bill CH.com Hall of Famer Offline "Dont expect me to lay down for this" Posts: 680 x0\|euclid\|USA\|\|0\|0\|OH,Ohio Gender:	Re: What would you do??? Reply #8 - Oct 2^nd, 2009 at 9:53pm Hey there, Go Fish, you can handle it. Just go.. Take what meds you got and go. If the beast whips your butt on the trip... So be it. Put up a fight for your life... Coach Bill.
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BarbaraD

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Re: What would you do???
Reply #9 - Oct 4^th, 2009 at 9:56am

GO!!! Don't let the beast win!

If it were me, I'd take along a case of Red Bull and chug one at the first sign of a hit (works pretty good for me when I'm away from my O2). And get some E-tanks to carry with you. (Weren't you ever a Boy Scout - be prepared!!!).

Lordy!! I've been chronic for more years than I care to remember.... and I've traveled all over the world with these things and had a great time (between hits) and can laugh about some of the places I got hit (just can't go back to Chicago for a while yet

).

Look, we understand that you're scared, but if you let the beast win, then you lose and that's just not acceptable. So go on your trip. If you get hit while you're having fun, take a little while off, get over the hit, then go back to having fun. But don't change your life just because you have CH.

The hardest part about "accepting" CH is to stop being ashamed of getting hit in front of someone. YOU can't help it and if it bothers the person you get hit in front of - they can go somewhere else. Explain it later, but at the time YOU CANNOT help what's happening to you. Accept that fact. You might explain to your buddies BEFORE that you have an illness and might get hit and if you do what you want them to do (leave you alone, get your O2 or whatever).

So now, Mama has spoken -- Go have a great time and catch the BIG one!! And bring back PICTURES - not stories of the ONE who got AWAY!

Hugs BD Kiss

What don't kill ya, Makes ya stronger!

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bejeeber

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Re: What would you do???
Reply #10 - Oct 4^th, 2009 at 10:47pm

Not saying this is the right answer, and its sure to be an intensely unpopular one since it runs contrary to what everyone else is saying, but as an episodic, I'd skip the trip and save my dogged preparedness for fighting back the beast where I can have a better chance of winning - on the home court where I can react most quickly and effectively if/when he decides to change tactics.

This is because I know from first hand experience that for an entire cycle it's possible to keep even a single hit from breaking through and raging on unabated - if I'm ready and able to marshal resources on a moment's notice.

My episodes only last a couple months and I'm perfectly willing to give up pleasure trips during that time. Clearly I march to a different drummer on this one. But then I derive no pleasure from driving a hook through a live fishes face, and I give highest priority to not giving the beast an opportunity to drive one through mine.

« Last Edit: Oct 5^th, 2009 at 12:38am by bejeeber »

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.

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Barry_T_Coles

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Re: What would you do???
Reply #11 - Oct 4^th, 2009 at 11:29pm

gus411 wrote on Oct 2^nd, 2009 at 9:45am:

Just wanna jump off a bridge. So what would you do???

#1. Don't do the bridge thing, its not the fall that hurts its that bloody sudden stop at the bottom. Grin

#2. What I would do or any one else doesn't really matter; it's how you are going to manage yourself in that situation, if you can hack it then go and enjoy yourself, if you cant then look forward to the next trip.

Cheers
Barry

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Of all the things i've lost in life the thing i miss most is my mind.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: What would you do??? Reply #12 - Oct 4^th, 2009 at 11:44pm Make a choice, go with it, and prepare not to have any regrets either way. It's the regrets that'll lay you in an early grave.
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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: What would you do??? Reply #13 - Oct 5^th, 2009 at 10:41am What I would do and HAVE done is get the 02 supplier to give me e-tanks. An M tank isn't exactly portable...and then I would go and have fun. I know Dennis already said this but I wanted to second it. Oh...and take along some energy drinks to slug down also. Rock Star has the least objectionable taste to me.
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Joni

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Re: What would you do???
Reply #14 - Oct 5^th, 2009 at 12:13pm

I agree with Bejeeber. If it is my first couple of weeks, I am not usually worn down yet, but after that, I start canceling things if it is a bad cycle. I don't cancel everything, but I pick and choose. There comes a time in my cycle (episodic) that I just am exhausted and have the cluster brain thing going on where I am just out of it and want my home base close for comfort and security. Personally, the outdoors would be the worse place for me in the Spring or Fall as it tends to aggravate my head even more. Just my 2 cents.

Joni

Experience: That most brutal of teachers. But you learn, my God do you learn. -C. S. Lewis

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Lottie

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Re: What would you do???
Reply #15 - Oct 5^th, 2009 at 1:29pm

Well I hope you got enough advice to make a decision.

I used to agree with bejeeber and joni, I too know what it's like if the Beast just sucks everything out of you.

But then my cycle just lasted and lasted and... The bloody Beast just won't leave me alone. Angry

So I've come to a point where I won't let the Beast decide what I'll do. If I wanna go somewhere I will, if I don't I won't.

If I'm going for a holiday or something else that's really important to me I ask the neuro for a prednisone script. It works great for me, sorry it doesn't work for you. But as you've seen, if you decide to go you have other options.

I also carry a small O2 tank and energy drinks around.

And if you're going: talk to your friends in advance. Tell them about your CH. I think you'll be surprised by their reactions. I've never had a negative reaction, most even ask me what they can do for me in case I get hit.

Lottie

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jim murphy

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Re: What would you do???
Reply #16 - Oct 5^th, 2009 at 3:42pm

I'm sure you don't need anymore advice but here goes anyway. Go on the trip. As someone else said in a previous reply, the pains the same at home or away and it's the pain free times you enjoy so why not enjoy it fishing? I'm 58 and had these god damn things since I was 18. I decided a long time ago that as far as possible, they wouldn't rule my life. I've been embarrassed a couple of times over the years but at least I was doing what I wanted to do. Go for it. I don't think you'll regret it.

Jim Murphy

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Lobster CH.com Alumnus Offline Posts: 2417 Gender:	Re: What would you do??? Reply #17 - Oct 5^th, 2009 at 4:52pm I travel on business frequently. As others have suggested, Prednisone is 100% effective for me for a week or so break. 20mg or 40mg daily, depending upon how close I am to my cycle.
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Callico

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Re: What would you do???
Reply #18 - Oct 6^th, 2009 at 6:16pm

As a chronic for the last 6+ yrs after episodic for 25+ yrs I have learned to not miss things that mean a lot to me. If I have to be in public around others who don't understand I will try to make myself as unobtrusive as possible and try to find a place I can get out of sight, but if I'm going with others whom I know and trust well enough to be honest with them I'll tell them up front (Simon's letter for openers) what is going on and then deal with it.

Take along some E tanks and energy drinks. I like the 5 hr energy cause they don't tear up my stomach as badly, and they are only a couple of ounces. It is a lot easier to slam one of them down than a 12-20 oz drink after eating a meal. They have as much Taurene and Caffeine as the others plus have a lot of B vitamins that help me with the emotional issues that come along with hits.

Catch a big one or two for me. I haven't been able to take time for fishing all summer, and it wasn't even the CH that stopped me. Sad

Jerry

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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gus411

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Re: What would you do???
Reply #19 - Oct 12^th, 2009 at 11:37am

Well I did it. Had an amazing trip hooked into alot of salmon I meen alot!!! Very strange though had a nasty hit on the ride up and throughout a couple of the nights. I used the relpax as a preventative and it worked well. Throughout the day was fine though??? I ussually get hit throughout the day like today with 2 down and more to go. Think it might have something to do with standing in the cold water cause while I was fishing I felt100%

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fish_023.jpg (Attachment deleted)

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: What would you do??? Reply #20 - Oct 12^th, 2009 at 11:45am Good for you! Sounds like it was a lot of fun. Not getting hit during the day might have had something to do with pumping a little more adrenalin than normal.
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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: What would you do??? Reply #21 - Oct 12^th, 2009 at 12:11pm Them are BOOTS. Potter
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lorac CH.com Old Timer Offline Imagine Posts: 433 Tennessee Gender:	Re: What would you do??? Reply #22 - Oct 12^th, 2009 at 4:40pm YEAH!!!!
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Joni CH.com Old Timer Offline Knowledge is Power Posts: 476 Gender:	Re: What would you do??? Reply #23 - Oct 12^th, 2009 at 6:43pm I'm so happy for you!!! -Joni
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gus411 CH.com Newbie Offline Thanks!!! Posts: 23 x0\|stony point\|USA\|\|0\|0\|NY,New_York Gender:	Re: What would you do??? Reply #24 - Oct 15^th, 2009 at 10:34am So ya now that im back been getting hit 3 and 4 times a night I hate this but... I tell you what I will never ask that question again just gotta keep on going live life 1 hour at a time during a cycle
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