Airplane headaches!?!

[kat_92]

Hey guys, 

I am tired of letting CH keep me from traveling. I have been doing TONS of research, and apparently…airplane headaches Exist!?! From what i have read it seems the symptoms are very similar to CH (blocked nose, teary eyes, stabbing pain behind the eye) and it seems some of the people that get them have never suffered from a headache a day in their life. They almost say they feel like they are getting a brain hemorrhage (at least I know if it happens there won’t be anything fatally wrong with me). And it almost always happens during the last 30 minutes of the flight(the descent). 
 

I am flying to Puerto Rico in March for a bachelorette party (I am the maid of honor, and I have to go). Oxygen on the flight and at my destination is not an option for me. I am planning on dosing with MM every week for the month of february. As for the flight, I am planning to drink tons of water, taking ibuprofen before the descent begins, and hopefully be on some good anxiety medication. I am determined to not let these win. I am missing out on so many awesome things. Any other tips? Maybe upping my d3 intake a week before the trip? I have read that some nasal decongestants help (ones with steroids?) has anyone experienced using these?
 

also THANK YOU to everyone who has already answered me. This is not my first time posting on this topic, it is one of my biggest fears. 
 

kat 

[Shaun brearley]

I've never let my CH stop me from travelling as it's 1 of my favourite things to do in life .  I do try to plan trips around my CH cycles , but I know this isn't always possible for some of us . I've only ever been hit once when flying , after 11 and half hour flight to Mexico .  It was a 1 off CH attack , but I always carry samitriptan injections on the flight with me just in case.  So ran to the plane loo and jabbed myself 5mins later attack over . Was in Mexico for  2 weeks no more attacks . Some people do a busting session the week before they fly   that seems to help . I've not done that myself yet , but will be doing that from know on , just don't let the BEAST control your life !!!!!! 

 

[BoscoPiko]

I believe Spiny mentioned caffeine tablets and 5 hour energy shots. Sounds to me like your really prepared with the pre dosing with M prior! Please share how it goes as it's a huge fear of mine as well and I haven't been on a plane since diagnosed. Good luck!

[spiny]

Kat, you will most likely be fine with your dosing prior. If you have MM, take a SPUT with you to the airport. You can suck on it for a long time when you get on the plane. If you are concerned about traveling with one, you are not when it is in your mouth. That, along with caffeine in any form should take up any slack. No drinking booze.

I suggest having coffee before take off. Having energy shots at hand when boarding! 

I was terrified to attend the Dallas conference because I had to fly.  Well, they really meant it when they stated 'We are only looking for explosives'. There was other stuff there if they were 'looking' for it. They were not. They did however have me open the bag to show them what was making the funny pics on x-ray! It was my Clustermask and regulator! LOL. 

You may not want to take any alternatives and I do understand that. Do your preventative busts before! If it goes south while you are there, go to the firestation with your mask in hand and ask for some O2? It works many places in the states, so I would try for that solution there first. We all know how bad the ER can be, so that often ranks second. 

That 'on landing' headache is from the increase in air pressure. I get a hit with the reduction in pressure.  So, take off. The plane does not have the same atmospheric pressure as we have at sea level when it is airborne, it is lower. Like a low pressure front moving into your area. If high pressure is a trigger for you, then yes, landing would be the time to be concerned.

Have your preparations in order before and your 'prevents' packed for the trip. Slap on a smile and head out! Then report back here, ok? 

 

 

[kat_92]

Thank you everyone! 
 

@Shaun brearley I am very surprised to hear that you’ve never been hit in the air really (knock on wood). I can’t really plan around my ch yet, when I started I was chronic, but this past year they have tapered off (slightly). I have not been suffering long enough to notice a pattern. I guess we will have to see 

 

[jon019]

5 hours ago, kat_92 said:

@Shaun brearley I am very surprised to hear that you’ve never been hit in the air really (knock on wood).

.....more than 20 trips for me w/o in air or immediate post trip hit.....usually while n cycle

[kat_92]

@jon019 

wow this makes me happy to hear! 

[kat_92]

@jon019

were you worried to fly the first time after your ch diagnosis? I haven’t flown since my diagnosis. My biggest worry is not necessarily getting hit on the plane, but having the plane ride trigger something and it ruining my vacation 

[jon019]

.....oh yeah....scary stuff since rapid barometric pressure changes were usually a trigger. i carried imi shots or zomig sprays plus energy drinks (and increased verapamil for the period i used it). my "theory" on why i wasn't hit in air is that travel is STRESSFUL and stress has always been a preventive for me (e.g. 20 mins home AFTER work stress a regular trigger). once i arrived, if in cycle, the cycle continued....which is why i usually arranged for O2 at destination thru Lincare travel program. CH takes enough...don't let it get your joy...be prepared, then deal with it where you want to be rather than where you are, and wishing you were there....

...edit to add....never triggered a cycle....if i was in, it continued, if i was out,it did not start one...

Edited December 13, 2022 by jon019

[kat_92]

@jon019 are you familiar with using zomig nasal spray on a flight? I do not take sumatriptan orally or via injection. It is very expensive and I worry it would interfere with my busting regimen. Zomig is much more affordable for me but I have never actually had to use it, but I would plan on bringing it 

[jon019]

.....never had to use on flight....but is very unobtrusive and much less of a show than an inject, if that's what worries you. TSA never even blinked, tho to me the injector looks bullet like.

...zomig became my abort of last resort quite early. imitrex hits like a sledge hammer...the 6 mg stat dose is WAY too high. the side effects almost as scary as a hit...it sure worked...but dang! anyway, the zomig (prescribed at same time as imi by a neuro who knew how to play the insurance game of not approving enough triptans) had minor, if any side effects, worked within 5-8 mins and gave me an 18 hour PF window. despite all this i greatly feared rebounds and sometimes rode out a hit rather than chance over use. it did become a rare need after i dialed in oxygen, energy drink and vit D3 regimen. surprised your cost is less...for me was nearly exact same price as Imitrex per script....tho using vials of imi and insulin needles i could get 15 aborts out of one script vs 2 per stat dose script (unhacked).... and with lesser side effects.

...i should mention that getting busting dialed in will make all jon's dinosaur knowledge obsolete....and no one will be happier than me that clusterheads in the future will be saying ....you did WHAT?!  

Edited December 13, 2022 by jon019

[Rod H]

If I was gonna fly and party like a rock star I would probably take some prednisone with me. Ya I hate it but it keeps the beast away.

[Shaun brearley]

3 hours ago, jon019 said:

.....never had to use on flight....but is very unobtrusive and much less of a show than an inject, if that's what worries you. TSA never even blinked, tho to me the injector looks bullet like.

Funny was stop once and asked why I had 2 injection in my hand laugage at Manchester airport . Told security that it was better for every1 on the plane  that I had than with me if I needed them , because it could get messy up there if I got HIT!! , they looked a bit puzzled   but got the airport doctor to come and speak to me . I had to go through all the usual CH explanation.  She had no idea really what the hell I was going on about, but 15 mins later she came back from her hidy hole office and told security everything was ok . Just makes me smile thinking about it , when they first stopped me at security the guy thought he'd could a drug addict  

[jon019]

.....there's no telling Shaun...i always carried a script just in case. injectables never got a glance, regulator and mask got a "what's these?" like spiny...but  my explanation accepted. my only hassle was from a can of salmon!...which got a supervisor and 4 agents in deep discussion. it was hilarious but i stifled so as not to appear crazier than the cracked head clusterhead i am. they let me go when i offered to eat it in front of them....

[kat_92]

Hello all, 

I went to my GP today (he is the best doctor in the entire world) and insists that oxygen is the saving Grace to treating ch, so I am very lucky. I got that script renewed today. Anywho, I was talking to him about getting CH hits while flying. He apologized for not having more information other than “you’ll never know unless you try it”, but he is right. He wrote a letter for me to the airline stating my need for immediate O2 should a headache arise. Does anyone have experience with this? Do I need the call the airline in advance? Or maybe get it faxed over? Thank you! 
kat 

[jon019]

.....yup, i'd call ahead...note that it is unlikely the flow will be higher than 3-5 lpm....so that's the first question....

[spiny]

Kat, with a script, you can call the O2 company that supplies you and set up to have O2 at your destination. They may have to refer you to the 'right' company for your destination. But, with a script, it is possible to have that base covered. 

[jon019]

5 hours ago, spiny said:

Kat, with a script, you can call the O2 company that supplies you and set up to have O2 at your destination. They may have to refer you to the 'right' company for your destination. But, with a script, it is possible to have that base covered. 

.....did this with Lincare in CA, OK, NV, WA many times with no hassle or extra charge...just remember the mask and regulator.....

[CHfather]

This is what UptoDate, an online resource for doctors, says. You should read the whole article -- a lot of good info at the end: https://www.uptodate.com/contents/supplemental-oxygen-on-commercial-airlines-beyond-the-basics#:~:text=In general%2C airlines do not,rented through an oxygen supplier.

"In general, airlines do not provide medical oxygen, but allow passengers to bring a battery-powered portable oxygen concentrator (POC) for use in flight. POCs that are approved by the Federal Aviation Association (FAA) can be purchased or rented through an oxygen supplier. Approved POCs will have a label indicating that they meet FAA regulations. Airlines may require notification of the need for in-flight oxygen at least 48 hours before the trip, making it necessary to undergo testing at least three days before travel."

Here is a link to what TSA says, but it's really covered in the article: https://www.tsa.gov/travel/special-procedures

[Maryo52]

Making sure your Vit. D level is in the 80-100 range is a start. I had one of those flying to Equador and asked the flight attendant for some ice. Well she brought one big honking bag of ice which did the trick. She seemed to know what she was doing! Also remember that a Red Bull shot also works well (at least for me). Plus coffee. 

[jon019]

32 minutes ago, Maryo52 said:

Making sure your Vit. D level is in the 80-100 range is a start. I had one of those flying to Equador and asked the flight attendant for some ice. Well she brought one big honking bag of ice which did the trick. She seemed to know what she was doing! Also remember that a Red Bull shot also works well (at least for me). Plus coffee. 

....worth noting that a 2 oz 5 hr energy type drink has MORE than RB of the caffeine/taurine we need.....and is TSA friendly!