Flying

[BoscoPiko]

I am wondering what others have experienced with flying and being a CH sufferer ? I have been apprehensive to fly since the onset of cluster as one time changing elevation from our home in El Dorado Hills, CA to our home in Truckee set my head ablaze. I have read that most airlines wont allow you to board with o2 so I'm a little intimidated to fly anywhere. Has anyone been allowed 02 on a flight or been provided with it when in need? What airline did you use and what was the protocol you went through to be given it? I am asking because I know my constant "stay near" approach to life is wearing on my husband. He loves to travel and wants very much to visit far away places but I'm just a bit timid about the elevation and being allowed the o2? Any info on flight experience is much appreciated.  

[Maryo52]

I remember getting a cluster flying to South America. I asked for ice and the flight attendant brought me a nice big bag of it and that did the trick. How about taking some energy shots with you?

[CHfather]

The only carry-on oxygen allowed on US flights is a portable oxygen concentrator.  Battery-powered, I don't think they go much higher than 6 - maybe 8 lpm.  A lot of hoops to jump through for that -- doctor's letter, advance notice to the airline . . .   Policies vary airline to airline.  You can rent them for travel.  I don't think the airline, at least on a domestic flight, will provide you anything more powerful than that to treat an attack.

You can carry on empty cylinders or check them in baggage.  You can have cylinders available to you at places you go to, through your O2 supplier or if not, through other suppliers.

Of course, you can bring abortive pharma meds on board, and energy drinks (I think they usually sell Red Bull).

Many people here have reported success with a SPUT (small piece/(amount) under the tongue) of seeds or M.  I suppose maybe L would work, too. 

I feel like (though this just might be the way it seemed to me) not many years ago, a flight for someone in cycle seemed to practically guarantee getting hit.  Now it seems less certain.  As I say, that might just be how I was reading posts.  Similarly, I don't think there's much risk of an attack for someone who is definitely out of cycle -- but again, people will correct me if I am wrong about that.

[BoscoPiko]

20 minutes ago, Maryo52 said:

I remember getting a cluster flying to South America. I asked for ice and the flight attendant brought me a nice big bag of it and that did the trick. How about taking some energy shots with you?

That's a good idea even though I've never used them. Maybe I need to try I have had good results with coffee so this may be a viable option. Thank you for the response.

[BoscoPiko]

18 minutes ago, CHfather said:

The only carry-on oxygen allowed on US flights is a portable oxygen concentrator.  Battery-powered, I don't think they go much higher than 6 - maybe 8 lpm.  A lot of hoops to jump through for that -- doctor's letter, advance notice to the airline . . .   Policies vary airline to airline.  You can rent them for travel.  I don't think the airline, at least on a domestic flight, will provide you anything more powerful than that to treat an attack.

You can carry on empty cylinders or check them in baggage.  You can have cylinders available to you at places you go to, through your O2 supplier or if not, through other suppliers.

Of course, you can bring abortive pharma meds on board, and energy drinks (I think they usually sell Red Bull).

Many people here have reported success with a SPUT (small piece/(amount) under the tongue) of seeds or M.  I suppose maybe L would work, too. 

I feel like (though this just might be the way it seemed to me) not many years ago, a flight for someone in cycle seemed to practically guarantee getting hit.  Now it seems less certain.  As I say, that might just be how I was reading posts.  Similarly, I don't think there's much risk of an attack for someone who is definitely out of cycle -- but again, people will correct me if I am wrong about that.

Thank you for the info I suppose I have to try to know for sure. I'm to scared to try anything shroom related (that may change one day) but for now I just cant bring myself to go there. My husband tried to purchase me a concentrator but they are hard to get in CA and the company that sold him one ended up being a fraud. I just don't want my condition to be such a burden on our life. Thank you again CHfather, 

[jon019]

.....oh it's so random sometimes...rapid barometric pressure changes were sure triggers for me...so plane travel was initially petrifying. but, must have flown a dozen times in cycle w/o ever getting hit...carried a Zomig NS and later several 2oz 5-hr energy type energy drinks (TSA ok) just in case. likely the stress of travel protective as stress was a "prevent" for me..

.....utilized Lincare's travel program with great success to OK, NV, CA and WA...either e-tanks delivered to hotel or self pick-up at the O2 store....DON'T FORGET the regulator and your best mask....did that once (and ONLY once) and my brother had to MacGyver both (pre the redneck O2 reservoir bag knowledge)..

....traveling to altitude most of those times (7-10,000 ft Ebbetts Pass/Bear Valley area)...the O2 vital as would get hit while there... but not the trip up and down...

Edited November 30, 2021 by jon019

[BoscoPiko]

Thanks Jon, 

I get a bit leery even when just going to our other home in  Truckee as I've gotten hit nearly every time on the climb up but I was always in cycle so maybe I just need to be 100% out prior to travel. I do carry the nasal sumatriptan in my back pack (everywhere I go) I just hate taking it as i get instantly sick (toss anything in my tummy and bad nose bleed)... Not so sexy... I will have to look up Lincares travel program. Thank you! 

[jon019]

3 minutes ago, BoscoPiko said:

I do carry the nasal sumatriptan in my back pack (everywhere I go) I just hate taking it as i get instantly sick (toss anything in my tummy and bad nose bleed)

...consider a Zomig NS trial....have never experienced any of the nasty side effects that are so common with Suma. and while not typically a prevent...an oral triptan prior to a WAY uphill/downhill jaunt might be worth a try...

[Bejeeber]

I've been hit on a flight and was lucky enough that visiting the lavatory was allowed right then (I went in and administered an imitrex injection).

Besides the SPUTs CHfather mentioned, I've also brought, or purchased in one of the stores after going thru security, an energy shot to have right in a pocket at all times, ready to deploy in an instant (without having to go dig it out of any carry on). Then in the other pocket, a nasal sumatriptan.

 

2 minutes ago, BoscoPiko said:

I do carry the nasal sumatriptan in my back pack (everywhere I go) I just hate taking it as i get instantly sick

This may not be the case w/you, I know, but some CH'ers have been under the mistaken impression that you're supposed to do a strong snort, or any kinda snort when deploying one of the triptan nasals. This can make it end up dripping back down the throat some, and blech. That's not so likely to occur though when doing it all proper-like, where you just shoot the SOB up the shnoz, no snortsy.

[jon019]

11 minutes ago, Bejeeber said:

This may not be the case w/you, I know, but some CH'ers have been under the mistaken impression that you're supposed to do a strong snort, or any kinda snort when deploying one of the triptan nasals. This can make it end up dripping back down the throat some, and blech. That's not so likely to occur though when doing it all proper-like, where you just shoot the SOB up the shnoz, no snortsy.

...oh that is golden!!! there is a definite technique that can make a huge difference. my best result was a gentle inhale (short of a snort)....if it drips out the inhale not enough, if a nasty taste and need to swallow then too much and the effectiveness very poor. a liitle blech being normal...... tis a bitch to learn this thru experience

Edited November 30, 2021 by jon019

[BoscoPiko]

9 minutes ago, Bejeeber said:

OB up the shnoz, no snortsy.

This is good to know... Maybe that's what I have been doing wrong?? My Neuro told me to plug one side and sniff hard when administering it goes down my throat and I cant help but up chuck.. Then I get a nasty nose bleed...

[Shaun brearley]

My and the missus flown from UK to Mexico, Jamacia ,Mauritius ,Maldives which we're all over 9 hour flights , all flight we're when out of cycle as I won't fly when in cycle . I got hit once when we flow to Mexico , my missus is very cautious when we fly and always make sure I travel with triptan injections so when I got hit I injected aborted the attack , I was worried the flight had brought on a cycle but it hadn't we landed and we we're able to enjoy are holiday 

[Cloudy]

i have had success asking the flight attendant to provide me with the emergency oxygen that they carry on board and just tell them it is for a neurological condition ...you have to have your own regulator and mask though to make it work 

 

[xxx]

Hey BoscoPiko,

Cluster headaches are very sensitive to serum oxygen concentrations.  If the partial pressure of arterial oxygen (PaO2) drops below a given threshold as it will when flying at a cabin pressure equal to 7,000 feet altitude (2100 meters) in most commercial airliners, PaO2 will drop by 30%.  This opens the door to the CH beast jumping real ugly. 

The same thing happens when we sleep as our respiration rate is as low as it can get while we're alive.  The low respiration rate also causes an increase in the partial pressure of arterial CO2 (PaCO2).  The combination of low arterial oxygen and high arterial CO2 makes for a perfect storm occurring as most of you know, one to two hours after falling asleep.

If you're an episodic CHer in cycle or chronic and need to fly, take a couple Imitrex (Sumatriptan Succinate) 50 mg tabs an hour prior to takeoff and carry an Imitrex inhaler or Imitrex SC injection pen during flight.

If you're a CHer maintaining a CH pain free status taking a vitamin D3 maintenance dose of 10,000 IU/day and cofactors, take a 100,000 IU loading dose of vitamin D3 24 to 36 hours prior to the flight.  The following chart illustrates the changes in vitamin D3 and 25(OH)D3 serum concentrations following a single oral dose of 100,000 IU vitamin D3.

Take care and keep your immune system boosted with vitamin D3.

V/R, Batch

 

[BoscoPiko]

3 hours ago, xxx said:

Hey BoscoPiko,

Cluster headaches are very sensitive to serum oxygen concentrations.  If the partial pressure of arterial oxygen (PaO2) drops below a given threshold as it will when flying at a cabin pressure equal to 7,000 feet altitude (2100 meters) in most commercial airliners, PaO2 will drop by 30%.  This opens the door to the CH beast jumping real ugly. 

The same thing happens when we sleep as our respiration rate is as low as it can get while we're alive.  The low respiration rate also causes an increase in the partial pressure of arterial CO2 (PaCO2).  The combination of low arterial oxygen and high arterial CO2 makes for a perfect storm occurring as most of you know, one to two hours after falling asleep.

If you're an episodic CHer in cycle or chronic and need to fly, take a couple Imitrex (Sumatriptan Succinate) 50 mg tabs an hour prior to takeoff and carry an Imitrex inhaler or Imitrex SC injection pen during flight.

If you're a CHer maintaining a CH pain free status taking a vitamin D3 maintenance dose of 10,000 IU/day and cofactors, take a 100,000 IU loading dose of vitamin D3 24 to 36 hours prior to the flight.  The following chart illustrates the changes in vitamin D3 and 25(OH)D3 serum concentrations following a single oral dose of 100,000 IU vitamin D3.

Take care and keep your immune system boosted with vitamin D3.

V/R, Batch

 

Thank you Batch. This is great info!

[Maryo52]

 And for those who don't have the medical background, the PaO2 reading is not the same as O2 saturation. Batch would know all about this from his work life.

For most of my life I traveled with trepidation because of headaches - could be migraine, could be cluster. People don't realize that having this disease means you think twice about shelling out money for travel when you could end up in misery.

[Freud]

For us chronics, at least me.  I know the hits are coming numerous times a day. Often kipp 9-10s, so I see it like this. Plane, train, home all good same sht. There is no stopping them some times.  But anything except the dentist while they are doing oral surgery.  That was the worst.  Take some trex and hope for the best.  In the last 5 years I flew 5 times. Only once did I get a CH and I took a trex (that was when I relied on them). Now I don’t fly with anything except ketamine if I have it.  That would be a great abort on the plane.  People it’s not reported much but oral and nasal ketamine will abort CHs!!!   If you get fewer attacks your less likely to build a tolerance.  If you are worried about disorientation or other side effects the oral (troches) are much less intoxicating when you are a newbie.  Takes a bit longer to kick in but what a life saver for me in the past.  Having both is my goal. 

[BoscoPiko]

34 minutes ago, Freud said:

For us chronics, at least me.  I know the hits are coming numerous times a day. Often kipp 9-10s, so I see it like this. Plane, train, home all good same sht. There is no stopping them some times.  But anything except the dentist while they are doing oral surgery.  That was the worst.  Take some trex and hope for the best.  In the last 5 years I flew 5 times. Only once did I get a CH and I took a trex (that was when I relied on them). Now I don’t fly with anything except ketamine if I have it.  That would be a great abort on the plane.  People it’s not reported much but oral and nasal ketamine will abort CHs!!!   If you get fewer attacks your less likely to build a tolerance.  If you are worried about disorientation or other side effects the oral (troches) are much less intoxicating when you are a newbie.  Takes a bit longer to kick in but what a life saver for me in the past.  Having both is my goal. 

Thank you Freud I'm only 3 years in so I dont have much experience. I've been playing aroud with abortive medicine and I have found (for me the trex and other triptans) keep me in cycle. So I avoid them like the plaque. I am episodic 3 months to 4 months on out of every year. I hate it but I know I'm lucky.. I hope your move to the sunshine state is fairing well.

[BoscoPiko]

Just now, BoscoPiko said:

Thank you Freud I'm only 3 years in so I dont have much experience. I've been playing aroud with abortive medicine and I have found (for me the trex and other triptans) keep me in cycle. So I avoid them like the plaque. I am episodic 3 months to 4 months on out of every year. I hate it but I know I'm lucky.. I hope your move to the sunshine state is fairing well.

I think that's what they call Florida? Lived there for my 3rd and 4th grade In Tampa I loved the random rain with the sun still out.. 

[Bejeeber]

41 minutes ago, Freud said:

People it’s not reported much but oral and nasal ketamine will abort CHs!!!

I seriously need to repeat this over and over to myself until it sinks in and sticks - I can see myself going for this without hesitation in the event of an O2 fail or unavailability.

[spiny]

So, I am wondering how you get Ketamine if the doc won't Rx it? 'Here's a matchbox of crystals. Take two at first. If no relief, take one more.' ????

I suspect that I am in the poultry family!!!! Run like mad if I don't understand it! 

 

[Maryo52]

I asked for ketamine from my PCP. He said it was experimental and he couldn't do it. However, I know my new neurologist will prescribe it (first visit in January). Can't wait to work with someone who is open to all the options.

[BoscoPiko]

I've read a tiny bit about ketamine and most of what I found said it was originally used back in the day to somewhat alevie pain on the battle field when a soldier needed a surgery from what I took in it did not work like our new age "knock your butt out stuff" but more like a pain reliever with a little extra? I guess my question or questions are how does it make you feel? Can you still function normally after and make dinner etc? Or are you kinda zonked?

[kat_92]

I’m always interested in this topic. I am chronic CH, and I have missed vacations with family and loved ones because I am PETRIFIED to fly. I have shadows all day every day, and I know for a fact I’d get a ch while on the plane. The only thing I would consider is doing a very VERY strict busting regimen for 2 weeks before, and carrying Red Bull’s with me….possibly taking Xanax to the point I don’t even know what’s going on. Soooo yeah. It sucks. I am maid of honor in my best friends wedding coming up. She wants to go to Puerto Rico for her bachelorette and I might miss it  what is ketamine (stupid question), and how do I qualify for that? The verapamil seems to be doing the trick for now…but it makes me ever so sleepy. 
 

best to all! Kat

[BoscoPiko]

Maybe @Freud can chime in here as he seems to know quite a bit about it.