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Bosco, I live on a mountain. From late September to the end of March was my cycle time every year. I quickly learned that going down the mountain - rising barometric pressure - was good. Going up the mountain was hell - falling barometric got me every single time. So, with this knowledge, I avoided flying for over a decade. I also avoided going down the mountain for about 6 months of the year too if at all possible. Then, I was invited to the Clusterbuster Conference by Bob, our founder. I had never been to one and I was determined to get on the plane and go. It was scary as hell too. But, with some caffeine caps in my pocket it went just fine! I did get hit when I was in Dallas, but only one thankfully and had lots of O2. The conference is always in late September, so it was a treacherous time for me to try it. My cycle is Equinox to Equinox and I was traveling on yes, the Equinox! I opened a caffeine cap and tossed it down with some coke when I got to the waiting area for the flight. I had upped my D for a few days prior to traveling. I can't take the energy shots and such, so I stuck with just plain old caffeine powder. It went just fine. I had checked on O2, but it would be at the conference, so I left that alone. I still am cautious going down the mountain in winter and carry caffeine. I also take a pain pill for the bad shadow I am prone to getting when driving back up. It is two lane up into the Great Smokey's and twisting all the way. No place to pull off and fight. So, the prevent comes into play big time for me. Hopefully you too can devise a method to get you around to both of your homes with less disruption. At least that is why I am putting this in here! I think that soon you will feel comfy trying RC Seeds for your CH. Easy to try and little to no trip. Really easy medicine to take. Hopefully you will feel confident enough to cross that bridge soon. I don't think that you have tried them yet!! If so, I missed it! "Fate whispers to the Warrior 'You cannot withstand the storm.' The Warrior whispers back 'I am the Storm.' Be the storm. You are becoming the Warrior, learn to be the storm too. Survive and Thrive.

....my opinion based on personal experience matches this. only eventually used Zomig NS (Sumatriptan too many nasty side effects) for absolute last resort. rode out more than a few hits for fear of rebounds with overuse (btw, noone knows what "overuse" is as we all are different). 99% effective, never any sign of a rebound HA, some mental support knowing i had it available if absolutely necessary. knowing now what i didn't know then i would have used more frequently....but, insurance provided damn few, and i may be talking about rebounds from hell instead. ...point being....and true of many meds....find the least amount that gives the required effect. you are never gonna know what that amount is for you w/o self evaluation. some are more risk averse (like me) than others. your choice.....

I think opinions vary about this. There's no doubt that triptan overuse will cause rebounds and perhaps extend cycles or make attacks worse. On the other hand, if you need one for a "breakthrough" attack where for some reason O2 isn't doing the job, I wouldn't hesitate. That's particularly true if you are injecting only 2 or 3 mg instead of the 6 that are in the standard injector. See this thread: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

Noted, so I'll use them only when O2 is not accessible. Thanks.

An update, Well insurance is weird, doc prescribed 16 for a month 1 every other day. Insurance only pays for 8 a month! I called the insurance and told them that Nurtec does not work well for me as an abortive but it seems to be doing great as a preventative medication taking it every other day. Well guess what, they cover every other day if I get a 3 month supply???? (So guys call your insurance and ask questions it can’t hurt) So I am getting 48 tabs for $90. I have been taking it for almost 1 month now and I have been migraine free and no Clusters so far. I am hoping that It keeps the migraines in check because like I have said before I have never had a Cluster without having a migraine first. I will keep the updates coming.

This was quite detailed Juss as are all your other comments. You are spot on with journalists and even photographers, I believe most know that truth is a hard sell these shitty days, at the same time most of us (even not Ch's) are looking for a moment in time to be allowed to chase dreams,play with a granddaughter/grandson without reprocussions.. yes that is the easy way to avoid speed bumps but that is the common nature anymore... no I'm not one of them, I tend to go against the grain. And do not mind the waves I create. I've also come to accept that I'm never going to feel as good as I used 2, I'm going to go through bouts of depression due to the lack of feeling well but .. in the end I'll have never given up.. not ever will I take this infliction lying down, submitt or say uncle. I'll wear this pain as best I can in an effort to put a smile on every face that has ever crossed my path. As for educators now days they (most are told what to teach and it ain't worth squat)... your friend Bosco..

Hi Spiny, no I haven't tried them yet but that is where I would start if I was going to. Thank you for all the helpful info and way cool quote at the end!

….those slammers out of the blue are truly frustrating. Have you gone over your list of triggers….any new meds…new foods….old foods you thought safe now….change in routine (especially sleep/naps)….weather fronts…new odors in house…allergies (my Fall allergies bad right now)…cold/flu/inflammation/infection?

Oh Mit, that is awesome!! Just made my evening dude. Congratulations on your success with insurance too!! Way to go!! I am sure that CHF will hang onto this for the future!! He is really great at that stuff.

Sorry buddy but I can't agree with violent upheaval to change the world and I have my reasons for that due to my past. Being ex military

Yes triptans can give you rebound attacks that are fair more painful plus can extent your cluster cycle buddy that's the reason I don't use them anymore

So nice to hear that I may not have to bear that unbearable pain again. Have so far not tried energy drinks and coffee. So basically the sumatriptan should only be used when O2 is not accessable I guess.

This isn't clear to me. The bag (the smaller one that you had before) should fill up fairly quickly when you turn on the O2. Then when you inhale, the bag should empty, or at least mostly empty. Then it should fill up again when you stop inhaling and are exhaling. The flow rate determines how fast the bag fills -- the higher the lpm, the faster the bag fills. That is the only relevant aspect of flow rate -- it doesn't affect how much O2 you take in when you inhale. If the bag does not fill fast enough that it is ready for your next inhalation, you need a higher flow rate. It is called a "reservoir bag," because it holds the O2 until you inhale it. Having a larger bag on there means that you have extra O2 for each inhale, which is fine, but you want to start inhaling as soon as there's enough O2 for you to take a full, deep breath, and not wait for a very large bag to fill. I'm just not really comprehending what you mean by "even at 10 lpm I get enough oxygen for 10 to 15 breaths." O2 virtually always works. For some people, it is less effective when the pressure in the tank is low (when there is less O2 in the tank). There might be times when it doesn't work, or takes longer to work, but the value of using O2 doesn't really decay over time. Yes, you will use less O2 when you find the breathing strategy that works best for you -- and there is also some evidence that it is just less effective in the first few uses than it becomes after that.

That one (the Flamenco brand) is a welding regulator. LPM is not an issue for welding, so the gauges don't show LPM and the product specifications wouldn't include it. The good thing is that you have a very wide range of lpm available to you from a welding regulator, the very small challenge is that you have to fiddle with the controls to find the lpm that works best for you (rather than just clicking an an lpm setting as you can do with a medical regulator. As I say, this is a very small issue that people quickly adjust to. The first link I provided in my post above is to a medical O2 regulator -- you can see that they look quite different. I think most of us would suggest that a welding regulator is the way to go -- as long as it fits onto your tank. That's not an issue in the US and many other other places, where both medical regulators for larger tanks and welding regulators for all tanks are CGA 540. I would assume the same would be true in India. I hope you have read that oxygen section in that document I linked you to. Some tips there about strategies and mask preparation that might speed up your aborts.

I think theres a lot that cannot be qualified, much less quantified by our medical experts. We think of our docs as gods - until u run up against something they dont understand - then they throw u away onto the crazy pile. I dont have much respect for psych field. A few r great... many not, cant go into all that now. But? If u were severly hypothyroid, hurt bad in a car accident, other injuries, had fms, went thru divorce from hell? Fought in court *9 years* after divorce? Hi stress job alone, gained 60 lbs.... u think u might not have some strange sx? Then ud be the stupid one.... i am completely okay with my mental state. I can live w what ive done and whats inside my head. I dont dissociate or get depressed rly, altho some ppl thot itd be real easy to push me into that... if u chose to think im crazy? Then id have to kinda pity u as someone who doesnt have much sympathy or kindness in you for soneone who has bern and us suffering greatly eith the same thing as u. I had my r lier tooth pulled it erupted 4 times. Right where trig nerve curves up. Dentist? No idea cha but shit to numb jaws? Helped cha... i used to follow up n ask others w migraines if it felt like their forehead was sliding dwn into their eyes when they got a migraine. No one said yes. Been hunting the chas for long time. If u chose to slsp the crazy label on me n dismiss my pain n suffering? I have to just turn my back on u n assume u r the one mirroring ur own psych issues- Thanks i need to read now.

Juss you really are a deep thinker and I really love that I'm learning so much from you buddy . But please don't switch yourself off from the modern world as you have to live within it, as Bosco has said time moves forward we have no control over that buddy and I'm afraid we as human beings have to move forward with it

I don't, lol. Dissociation and an odd sense of humor help.

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

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

I am trying Nurtec because I have Migraines at least 3 times a week. I believe that my situation is a little different than most CH suffers as I have never had a CH without having a migraine first. My doctor described my situation as a migraine headaches with cluster events. I always said that I believe if I can get controll of my migraines I can be CH free. I will be contacting my Insurance on Monday to see if they cover Nurtec. If my insurance covers it I will keep you guys informed with my results.

Try different breathing with mask . Try hyper - ventilating or try standing when using your o2 . Empty your lungs b4 you start on your o2 . Don't give up on it yet you will find the rite way to use it with each attack I have to switch my breathing with my attacks

NR', if you put the word Nurtec into the search bar at the top right of any page, you'll see what people here have said about it. No one reported having the success that your doctor's other patient had, for sure. It's important to recognize that mostly you are likely to see disappointments reported here, since people who have success are not particularly likely to come here to report it, so you're not getting the full picture. (In that regard, it's frustrating that some Nurtec threads tail off without closure, since it's impossible to know whether the treatment succeeded or not.) It's my understanding that Nurtec is an abortive medication to stop individual attacks (migraine attacks, since as you say it isn't an approved CH treatment). Is that how your doctor prescribed it (take it to stop an attack), or are you supposed to take it regularly as a preventive? Aside from that patient whose cycle is reported to have ended, as an abortive Nurtec seems to be not nearly as effective oxygen or triptans. My goodness, it is expensive! When you say "without insurance," if that means you have no insurance, that's one thing, but if you do have insurance but it won't cover it because it's not approved for CH, maybe you could try something like Emgality, which works in essentially the same way, on CGRP receptors, and is approved for CH. If you decide to go ahead with this purchase, you can get it for a little less using a coupon from at goodrx.com. Can we assume that you are using all the standard CH treatments -- oxygen, D3 regimen, etc?