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Topic: Going on a cruise (Read 1187 times) |
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wink
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Going on a cruise
« on: Dec 17th, 2007, 2:03am » |
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Longtime and sporadic lurker, very rare poster...
For the past few years, my clusters have been relatively mild--usually maxing out at KIP3. I don't bother using trex on those since it is so expensive, and for reasons beyond my comprehension, if I'm at a KIP3 or lower, O2 only knocks the pain down a notch but doesn't abort it like it does for KIP4+.
My last cycle was my longest ever at 8 months (previous record, 4 months). My doc tried me on Lithium and it apparently worked.
I used to keep buying trex when I was out of cycle to build up a stockpile, but I stopped since it looked like Lithium was working as a preventative and that my clusters have gotten milder (though longer--up to 15 hrs! grrrrrrrr.) And hey, why buy lots of trex if you don't need to--that stuff is expensive.
Turns out that the Lithium isn't working at all; I just happend to start it as my cycle was winding down. Now I'm getting hit twice a day (unusual--usually I only get hit once a day) with KIP5s.
Definitely need to abort those, so I haul out the O2 and start using my trex.
Here's the problem. I'm going on a cruise for 10 days. But because I was stupid enough to not keep a big stockpile, I only have 8 trex pins left. I use the Imitrex Tip, so I can get 16 doses out of it, but that's not going to be enough to get me through the whole trip at the rate I'm getting hit.
I have a few options:
1) Bring O2
2) Start a pred taper at the beginning of the cruise to drop the number of hits. The problem with this is that pred, while working great for me the first few times I took it, has been increasingly ineffective. Enough so that the side effects outweigh the benefits. But it just might be enough to get me through the cruise.
3) Both 1 & 2.
My questions:
1) Do airlines let you pack multiple O2 containers in baggage? If so, how much extra do you usually have to pay for going over the weight limits? And how to you drag the O2 to and from the airports?
2) Do O2 providers have arraingements with other providers in other states so that you can have O2 delivered to your destination? 'Cause that would be a lot easier than lugging O2 to and from the airport.
3) Do cruise ships have a problem with you bringing a bunch of O2 tanks onboard? Do they have their own O2 supplies that they can loan to you? 'Cause that would be best of all if I only needed to bring my regulater and rebreather mask.
Any advice or suggestions?
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wink
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Re: Going on a cruise
« Reply #1 on: Dec 17th, 2007, 2:14am » |
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Oh, and here is my med history which you'll inevitably need to know:
What I'm using now:
Preventative - Lithium (not really working, but still on it)
Preventative - Atacand (just started taking it, too soon to tell)
Abortive - O2 (for some reason doesn't work below a KIP4)
Abortive - Imitrex (using the Imitrex Tip)
Abortive - Energy Drinks (knocks the pain down a couple of levels, but rarely fully aborts unless it was only a KIP1-2 to begin with)
What I've tried but am no longer using:
Prednisone (used to work well, but doesn't work so well any more)
Verapamil (ramped up too fast, and then couldn't stand up without falling over; will try again if the Atacand fails)
Depakote (made me feel nausiated constantly)
Ice (made no difference)
Water Water Water (made no difference)
Kudzu (made no difference)
Heavy Exercise (never made a difference, and is now out of the question due to injuries)
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nani
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Re: Going on a cruise
« Reply #2 on: Dec 17th, 2007, 2:25am » |
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on Dec 17th, 2007, 2:03am, wink wrote:
Any advice or suggestions? |
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Yes, call the cruise line. They should be able to get things set up for you.
A 15 hour cluster? That doesn't sound right to me. Maybe you should see your doc.
pf wishes, nani
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wink
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Re: Going on a cruise
« Reply #3 on: Dec 17th, 2007, 2:47am » |
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on Dec 17th, 2007, 2:25am, nani wrote:
Yes, call the cruise line. They should be able to get things set up for you.
A 15 hour cluster? That doesn't sound right to me. Maybe you should see your doc. |
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Planning on calling the cruise line in the morning. Just wondering if anyone else had any experience with this.
15 hrs. Yeah, I've talked to my doc about this. The thing is that I'm a pretty classic Cluster case in every other way. And, importantly, I respond to Cluster meds about as you expect for a Clusterhead. So the only real odd part about how I present is that my headaches are really long. My shortest non-aborted headaches have been 4 hrs long, and my average is probably around 8. It's pretty weird and downright crappy, but that's just the way it is for me.
The Beast is a little different for everyone. Mine is apparently a marathoner.
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Miz_D
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Re: Going on a cruise
« Reply #4 on: Dec 17th, 2007, 5:13am » |
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Hi Wink,
They will have some 02 on board but would definately take a rebreather mask with you. Calling the cruiseline or port agent is a really good idea to let them know your condition and meds you might possibly need while on board (possibly is a good word for THEM) 
See if they can get the ship's doctor to stock some imitrex for you but take as much as you possible can with you as I don't know what the charge would be for passengers.
Depending on where you are cruising too is also a factor as ships sometimes can restock meds while in ports but sometimes the meds you need are not easily obtainable.
This is not very helpful sorry...my experience as a clusterhead at sea was as a staff member and I won't bore you with what a nightmare that was for me, hehe
You'l be treated much better as a passenger but please remember that ship's doctors are often more concerned with traveling in the sun and bedding the singel gals on board than they seem to be at keeping abreast of current treatments for CH... 
Wishing you happy pf sailing!
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BarbaraD
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Re: Going on a cruise
« Reply #5 on: Dec 17th, 2007, 7:47am » |
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Another thing -- depending on where you're traveling and where the ship docks -- you might take a scrip with you and get some trex while in port (much cheaper in countries other than the good old US).
I have gotten cafergot and topamax without a scrip just by going into a pharmacy and asking for it. But to be on the safe side - take a scrip with you.
Definitely talk to the cruise line about the O2. You might can have a supply delivered by a local supplier (the cruise lines will probably charge you an arm and a leg for it).
Another suggestion -- take an empty suitcase on the plane with you and load up on the Red Bull before you go aboard the ship (in the empty suitcase). That way you don't have to lug it any further than the airport to the ship.
And have fun on your cruise. don't let the CH get the best of you. I've been on a couple with them and YOU WILL SURVIVE - trust me.
Hugs BD
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Melissa
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Re: Going on a cruise
« Reply #6 on: Dec 17th, 2007, 9:31am » |
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Could it be possible you are experiencing 2 separate types of headaches, like, migraine's in addition to clusters? Would explain why the "cluster" meds work on them (they were made for migrainers to begin with).
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wink
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Re: Going on a cruise
« Reply #7 on: Dec 20th, 2007, 2:37am » |
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Thanks everyone. I've got it arranged with my O2 supplier that they will deliver O2 to where I'm staying before the cruise. Then I'll bring it onboard myself. Not the most convenient option, but by far the cheapest.
Quote:| Could it be possible you are experiencing 2 separate types of headaches, like, migraine's in addition to clusters? Would explain why the "cluster" meds work on them (they were made for migrainers to begin with). |
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I suppose. But I don't have any of the symptoms of migraines except duration. No sensitivity ot light or noise, no nausia, etc. All of my headaches are focused on just one eye. And, unless they are shadows, they respond pretty well to O2.
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sandie99
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Re: Going on a cruise
« Reply #8 on: Dec 20th, 2007, 3:00am » |
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I'm glad that you got your med problem solved, so that you can relax and enjoy the cruise.
I'm energy drink user what comes to ch, so I would have suggested that you'll pack few of them with you, so that they will at least knock the pain down if nothing else. Caffeine tabs help me as well, so I'm carrying few of them with me when I leave my appartment, just in case (the beast caught me by surprise last week after a month).
PF wishes,
Sanna
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Miz_D
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Re: Going on a cruise
« Reply #9 on: Dec 20th, 2007, 1:55pm » |
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Yeah...bon voyage! 
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wink
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Re: Going on a cruise
« Reply #10 on: Jan 2nd, 2008, 2:14am » |
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Happy New Year everyone. I'm back from my cruise, and had a mostly good time.
I got the O2 onboard just fine and I took lots of energy drinks with me too. And since I didn't really have anything to lose, I also went on a pred taper right at the beginning of the trip. Boy am I glad I did! The pred bought me 4 pain-free days right from the get-go. What a huge relief after getting hit 3x a day.
After that, I got hit once, and then later twice a day, but O2 and energy drinks took care of most of those. By the end of the cruise I was getting hit 3x a day and needing to use trex to abort, but by then I wasn't worried about running out any more.
Anyways, it was a good trip--better than I would have expected while having one of my worst cycles ever.
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BarbaraD
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Re: Going on a cruise
« Reply #11 on: Jan 2nd, 2008, 6:51am » |
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Glad you had a good time. And a happy new year to you too..
Hugs BD
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deltadarlin
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Re: Going on a cruise
« Reply #12 on: Jan 2nd, 2008, 8:02am » |
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on Dec 20th, 2007, 2:37am, wink wrote:
I suppose. But I don't have any of the symptoms of migraines except duration. No sensitivity ot light or noise, no nausia, etc. All of my headaches are focused on just one eye. And, unless they are shadows, they respond pretty well to O2. |
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I have migraines and I don't have any sensitivity (unless you want to count perfumey odors). No nausea and all my headaches are one sided (that is typical of migraines) and sometimes effect one eye, which has been known to tear-up. Don't respond to oxygen though.
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