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Terrified to travel..... tips???


beersnuggles
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first off, HI!!!!!!!!! so happy to have found this! 20yr CH here. diagnosed properly 4yrs ago. In the middle, hopfully the end, of my nov-jan cycle. super intense this time around. new shadow where my teeth just f'n hurt all the time...opposite side of the usual.... idk....weird.   Anyway, traveling to fla with my wife and teen boys for new years. I am pertified of being away from my familiar routine and tools. currently using o2 and sumatriptan to squash these bastards. getting the run around when looking to pick up o2 tanks while i am down there. has anyone had a similar experience? 

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Hi beersnuggles sorry to hear about your recent CH cycle a lot of us are experiencing a rough time this year for some reason.  I try not to travel whilst in cycle but I do carry samitriptan injections with me when ever I do travel . As for o2 I have 5 portable tanks I carry with me everywhere I go if travelling for a few days plus i take 1 large tank with me . If your flying you can arrange to get 02 dropped off at your destination through your 02 supplier before you travel . Hope this helps . Hope you and your family have a great Xmas and New Year 

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thanks Shaun! yes, im flying, so not being able to bring o2 on the plane was worrysome. Its seems ill be able to pick up some when I get there though, so that is a huge relief!!! having enough injections for each flight is huge and i paied the rediculous cost so i would have extra.  the flights are typically when i dont have an issue so, hopefully I wont even need them, but, god, i cant imagine having an attack on a plane without anything...... ive had literal nightmares the last few nights about it.  Its been a tough time for everyone this year and my fam deserves some RnR, so im praying it dosent effect things too much. also, holding on to some far fetched hope that a change in location/weather/ cabin pressure? lol, might break the cycle!!  gonna stick with NA bevs to be safe but, a margarita on the beach just sounds like Heaven!!!!

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Hi Beersnuggles,

I have a fear of flying for the same reasons as well as the altitude. I posted something out flying a while back and got some good feedback. Here were some of the suggestions:

5-hour energy shots

caffeine tablets

Imitrex prior to boarding

Keep your injections handy arrange for 02 where your going

And just as an afterthought I wonder if you could take a few boost cans on board ? 

Boost Oxygen- 95% Pure Aviator’s Oxygen- 2 Liters

 

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....Lincare had a great travel O2 program that made O2 (delivery or self pu) available at multiple locations. never an issue and became a reliable travel anxiety relief. bet most major O2 shops have same. good idea to call ahead (public or private) wherever you are staying so a tank delivery not rejected....

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Hopefully injections/needles are allowed on flights at this time? I haven't checked on that for a while, but this is where I've found the nasal spray version of the triptan to be a nice reassuring pocket pal to have on a flight (if you have any of those laying about). I've been a straight up syringe-with-q-tip-used-as-the-plunger guy for injections for awhile though, and that pretty much screams out for excusing oneself to the lavatory, whereas I could see an auto-injector being deployed more discretely whilst still strapped into seat.

If needles are allowed onboard, one more thought: Have it on your person at all times, not stored in the overhead, as that ain't gonna be accessible during times like take off/landing.

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Thanks Guys!! im stocked on the injections and will have them in my chest pocket at all times! calling around on monday about o2 tanks near my stay.  

side note: my nightly visitor (usually 6-8pm) has not shown.  not that that means anything but... last year xmas eve was the last attack of the cycle soooooo....ya know

holding on to hope wherever we can find it!!!

also, after reading all day on here.... not gonna wait. waited long enough.  spores are ordered.  Echo the Geko (R.I.P.), i will think of you fondly as I turn your aqaurium into a terrarium for what may well save me :P 

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7 hours ago, Bejeeber said:

Hopefully injections/needles are allowed on flights at this time? I haven't checked on that for a while, but this is where I've found the nasal spray version of the triptan to be a nice reassuring pocket pal to have on a flight (if you have any of those laying about). I've been a straight up syringe-with-q-tip-used-as-the-plunger guy for injections for awhile though, and that pretty much screams out for excusing oneself to the lavatory, whereas I could see an auto-injector being deployed more discretely whilst still strapped into seat.

If needles are allowed onboard, one more thought: Have it on your person at all times, not stored in the overhead, as that ain't gonna be accessible during times like take off/landing.

Never had a problem taking injections on a flight just once I've had to explain when going through security about illness

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11 hours ago, Shaun brearley said:

Never had a problem taking injections on a flight just once I've had to explain when going through security about illness

....the only question i ever got was for an oxygen regulator/mask (they do look kinda strange off the tank)....they obvioulsy didn't know what it was but i also got the feeling they wanted to know if I knew. good idea to have a short, practiced blurb of CH (incredibly painful, debilitating neurological attack that may look bad but is not life threatening, yadda yadda) at the ready for this and other similar occasions. they aint gonna fully understand but it might come in handy... i bet Shaun had a good one.

Edited by jon019
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4 hours ago, Shaun brearley said:

. . Didn't have explanation ready so just came out with. I've got a brain disorder and if you don't allow me to take this medication on-board with me we could all have a major problem that we don't want at 38000 feet . They didn't ask anymore questions 

I need to finesse my descriptors to explain CHAS to medical personnel. I have to give myself an F so far. I did explain it to 1 lady doc who cried w her hand over her mouth.. but, perhaps i could borrow this for e.r. visits. And because i, like Juss? When CHAS strike, i tend towards speaking in tongues? Am thinking of Xeroxing some web sites because i seem to run into some ppl that just dont kno anything abt this. My last doc told me i need to be kinder to my doctors as they only receive 1 hour in med school on all headaches.... tried kinder. Didnt work. Am thinking written word may be most powerful? Thanx for this :)

 

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1 hour ago, Sue mcdonald said:

Am thinking written word may be most powerful?

....worth having at the ready if a hit interferes with communication, especially something from a recognizable source (e.g. Mayo Clinic). no telling how or what resonates with folks. used to give Simon's Employers & Colleagues letter but stopped from frustration that some didn't even bother to read...

Edited by jon019
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