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Topic: Travel Tips (Read 1286 times) |
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FramCire
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Travel Tips
« on: Jan 10th, 2006, 1:06am » |
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I am expecting to take a 1200 mile trip to see my family in late February with my wife and 2 little kids. We have always flown in the past but this was before CH. I am in a cycle right now that started before Thanksgiving and so I want to be prepared in case it is still in full force in Late February.
I have heard flying is a bad idea. Any tips on flying? Will they allow O2 on board? Should I just skip the trip (my family has already told me they would certainly understand)? I have no problems getting O2 and meds here or at my final destination, but my concern is the flights.
I am sure you all have covered this topic a million times but I have no idea how to search the MBs for this info and being in the middle of a cycle, my patience is a bit thin and I am a bit lazy. Sorry.
For those who are chronic, I just want to salute you all just for making it and being here to impart wisdom to those of us who are new at this. This past 6 weeks has driven me ther brink of insanity and my wife and you guys have kept me from going insane. I am nowhere near losing it thanks to her and you and for that I am grateful (and I post it every time I can and you all are going to have to deal with that).
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| « Last Edit: Jan 10th, 2006, 1:06am by FramCire » |
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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gobby
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Re: Travel Tips
« Reply #1 on: Jan 10th, 2006, 1:23am » |
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I work for a major airline, and know that you had better ask before attempting to take O2 on a plane. Some airlines may allow it, but I'm pretty sure mine dosn't. What about Imitrex injections? If they work for you, they work fast.
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Mr. Happy
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Re: Travel Tips
« Reply #2 on: Jan 10th, 2006, 1:23am » |
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You can't take O2 cylinders on board a plane with you. Airlines DO keep O2 on board, but you have to make prior arrangements with the airline to get it pronto. It'll cost you $75 or more for on plane use of their O2.
You'll need to work some O2 into your destination, either with a script and some fone calls, or somebody with a welders tank.
It can be done, but may cost some bucks and require planning ahead.
RJ
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BarbaraD
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Re: Travel Tips
« Reply #3 on: Jan 10th, 2006, 7:02am » |
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If you're on trex - take it with you. I've been hit on a plane once or twice (while on trex) and had no qualms about shooting up right there in front of everyone (one time I made it to the restroom, but others I didn't - I really didn't give a rat's rear if the people around me looked funny - better that than watch me knock out a window).
See about O2 on the other end. Carry a script from your doc for it.
If you get hit in the terminal - get to an airport personnel and give them the script and YELL if you have to to get O2 (and they will listen if you yell loud enough and have a script with you - trust me on this one!). Carry your own mask and regulator in your carry on luggage.
When making your reservations TELL them that you have a condition that MAY require O2. they keep portable tanks on the plane and can make them available if you require them. They used to not charge for this, but any more they probably do.
I've flown a lot without getting hit and then out of the blue walla - Mr. Beast shows up without warning. Some think it's the pressure, but I think he's just a bastard and unpredictible.
Don't give up your plans - just plan ahead. And have a good time when you get there.
Hugs BD
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What don't kill ya, Makes ya stonger!
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marlinsfan
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Re: Travel Tips
« Reply #4 on: Jan 10th, 2006, 10:52am » |
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DON'T CANCEL YOUR TRIP!! DON'T LET THE BEAST CONTROL YOUR LIFE!
Bring your trex shots on board, most airlines don't allow O2 tanks (remember the Valuejet crash in Florida from O2 tanks blowing up?).
Find an O2 supplier in your destination and have them deliver a tank to your hotel/parents house. Bring your mask and regulator. Bring an original copy of your script too.
I travel a lot for work, have traveled while in cycle and have never been hit while up in the air. But I spend most of the flight drinking coffee......
Where are you going to? I'm sure wherever you're headed there is a clusterhead on this board who can point you to a local O2 supplier.
PF wishes.
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E-Double
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Re: Travel Tips
« Reply #5 on: Jan 10th, 2006, 11:05am » |
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Everything Jose' said x10!!!!!
Don't let it control ya!
Also like Barb said, you can take your injections if you use them.
You may want to get a letter from docotr just in case they question the syringe.
I have flown plenty of times with the needles and never was asked but you never know.
Good luck and have a safe, happy and PF trip
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Roxy
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Re: Travel Tips
« Reply #6 on: Jan 10th, 2006, 11:17am » |
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I have to travel constantly, and usually have to fly somewhere at least once a month. For what it's worth, here's my advice:
1. Don't worry about 02 on the plane or the airport....too much hassle. Just take a few fast acting triptans with you. Keep them in hand. I left mine, like a dumb ass, in my carry on one time. Got hit on take off....they won't let you stand up to get your bag. Or even better, take a long acting triptan as a preventative before you get to the airport. Zomig tablets, Amerge, Relpax or Frova should do the trick. Then you don't even have to worry about getting hit on the way.
2. Find out if there is anyone from this board living where you are headed. If there is, find out where they get 02. If not, get on the phone and find 02. Fax them your prescription, have it all worked out before you leave. The 02 will there waiting for you, swing by on your way from the airport and pick it up.
3. I always carry my own regulator and mask with me. I've been places where the 02 was plentiful, but they only had 8lpm regulators.
Have a good time on your trip, and don't let your head slow you down at all.
If you're worried about syringes and vials (if you do trex) getting on the plane....don't. Security has never, ever looked twice at mine, and I had almost a whole box of syringes in my bag. They just pawed through them all looking for God knows what.
Have fun,
Roxy
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Bob_Johnson
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Re: Travel Tips
« Reply #7 on: Jan 10th, 2006, 11:58am » |
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Since you are in an active cycle you have the opportunity to try one of the oral triptans or Zyprexa. Using this approach will make life much easier since you can carry a few pills in your pocket for a flight.
----
1: Headache 2001 Sep;41( :813-6
Olanzapine as an Abortive Agent for Cluster Headache.
Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
------------------------------------------------------------------------ --------
Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Bob Johnson
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chewy
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Racer1_NC
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Re: Travel Tips
« Reply #9 on: Jan 10th, 2006, 9:48pm » |
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on Jan 10th, 2006, 10:52am, marlinsfan wrote: (remember the Valuejet crash in Florida from O2 tanks blowing up?).
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That airliner went down because of improperly prepared for shipment O2 generators, the very kind you have above your head when you fly. They produce O2 by chemical reaction that also generates heat.
Bill
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FramCire
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Re: Travel Tips
« Reply #10 on: Jan 10th, 2006, 10:18pm » |
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Well, I went to the Headache Care Center in Springfield Missouri today and met with Dr. Cady who seems to have a ton of acredidations and stuff. He confirmed my diagnosis (dagnabit!) and he wants to put me on Migranol which evidentally costs $200 per dose if insurance doesn't cover it. So, time to put on the boxing gloves tomorrow morning and see what can be done. He says this junk (nasal spray or injection) lasts 24 hours - or can be takes a 2nd time will help me sleep and he hopes it will get me through to the end of this cycle. The good news is that he doesn't think Topamax is that effective and that it just is messing with my mind too much so he is tapering me back off of it so I can clear my mind a bit.
Anyway, if he finds a way to get this stuff at least mostly paid for, it will be a minor miracle. Otherwise, I will be on the phone with the drug company too because $200 per day is just a wee bit beyond what I can afford.
However, if this stuff works, it will make my travel plans a lot easier. Getting O2 at my destination site will be very easy and this issue will be settled without any real problems.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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sandie99
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Re: Travel Tips
« Reply #11 on: Jan 11th, 2006, 2:48am » |
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on Jan 10th, 2006, 10:52am, marlinsfan wrote:DON'T CANCEL YOUR TRIP!! DON'T LET THE BEAST CONTROL YOUR LIFE!
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I agree: take the trip, prepare well and enjoy every PF moment you have. Ch can try to control your life a lot, but it's up to you how much.
I used to study in the UK, which meant regular flights between Finland and London. I've also been on few holidays which meant lights. But I must admit: no problems. I have never been hit during flight, but I've had mild hits before and some afterwards.
We're all individuals, so it's good that you prepare well for the journey. But it might be that ch lets you travel PF, so DO take the trip and pretend that you don't have ch at all. If you do get hit, then you will. But in the meantime, enjoy the time with your family as much as you can. 
Best wishes & PF time,
Sanna
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"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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