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signals61 last won the day on February 11 2020

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  1. Personal experience update: Nurtec was effective for the first 24 hours or so, but didn't make the 48 hour goal. Last night, within the 48 hour window of initial medication, the first visit of the beast came at the usual 1:30 AM time. I think it was not as intense as usual. Pain only, no rhinorrhea, conjunctival injection, or lacrimation, and I spent 10 minutes on the tank before heading back to bed. Normally I'll get three visits during the night, but I'm on the tail end of my cycle right now, so I can't use the reduced attack count as a guide. So maybe it still had some kick left in it? Not sure. Tonight I'm going to wait for the beast before medicating, just to see how fast it actually works. I probably won't update again unless something radical is noticed. I'll keep using it for the next couple weeks till its gone. Bottom line for me is, if insurance doesn't cover this it's a moot point. Sumatriptan is faster , cheaper and much more predictable, oxygen is a good backup. Considering the retail cost, I'm disappointed in my results so far.
  2. All good questions @Pebblesthecorgi What I can tell you right now regarding cost/insurance: My doc and I really didn't consider it at this point. The first script wound up being free with a doctor provided coupon. The pharmacy listed the retail price before the coupon at $1003.99. GoodRx says I can get it as low as $864 (retail without coupon or insurance). A package contains 8 pills, and that's supposed to last 30 days. Maybe for the average migraine sufferer, sure. But for us CH folks, at best, that's 2 weeks (assuming it holds true to the data, 1 pill every 48 hours). If my insurance doesn't cover it, at least partially, I won't be getting a refill. At that price point I can't justify the cost! If it accelerates my metabolism, I'm ok with that for the moment. I don't take verapamil as it did nothing for me and I already take atenolol (beta-blocker) for blood pressure. The beta-blocker increases weight gain, so an increased metabolism might offset that - it might also cause my BP to rise (I'll keep an eye on that). And that could explain the difficulty I had getting to sleep last night. I did ask my doctor about Emgality, the once a month injection. He didn't seem enthusiastic, but said he'd write it if this one didn't work out. (I suspect he had a sales guy in from BioHaven pushing Nurtec, but no one from Eli Lilly has been around to make such offers for Emgality. In any case, Emgality lists on GoodRx for $559 with a coupon. Still only going that route if insurance covers most of it.
  3. Early review - Took the Nurtec last night - I was just starting an attack, but it wasn't in full bloom. As you all may know, it's a dissolving pill, so you just put it under the tongue and let it melt. It has a light mint flavor, not unpleasant.Fully dissolves in about a minute. True to the literature, within an hour the pain was gone. So not as fast acting as the triptan injection, but it did seem to be effective and without the heavy chest sensation I get from the triptan. The only side effect I may have had - I had a hard time falling asleep. Hard to tell if that's just the stress of the day or the meds. (Actually one of the the things I like about triptans, they make it easy to fall back asleep.) For me, the beast predictably comes two or three times a night, in my sleep. First attack is usually like clockwork at 1:30 AM. Random attacks happen during the day or late evening. So the big test was, would I make it through the night without the beast knocking me out of bed? Mostly, yes. I woke once, but not from pain. I did have a mild attack when I woke on schedule in the morning. I settled that one with 5 minutes on the O2 tank. Again, according to literature, if you do get an attack, the intensity should be reduced, so this is also consistent. So - next thing to look at - according to the literature, I should get through 48 hours with no attacks. We'll see after tonight. Stay tuned.
  4. My doctor also suggested I try Nurtec at my annual last week. I picked up the script today and I've been doing as much research as I can get my hands on. Like @kat_92, I'm suspicious when it targets migraines but doesn't specifically mention clusters. I reviewed their web site and couldn't find a single mention of cluster treatment. Also, literature says it can take anywhere from 1-2 hours for pain relief, so if I'm using it as an abortive, I don't know that that helps much. That said, it says it prevents them for 48 hours after. That could be good. They seem real proud that it reduces the biggest problems associated with migraines: Noise Sensitivity, Light Sensitivity and Nausea. Great, but like most of you, I don't have those symptoms with my cluster attacks. @CHfatherI found one line of discussion that indicated the maker is filing with the FDA to have it listed as a preventive, and that some headache specialists are already prescribing it that way even though the current FDA guidance specifically says its not. My pharmacist freaked out when I filled the script - I also refilled my sumatriptan at the same time and the pharmacist was emphatic that I not take them both. I honestly had not intended to, but if Nurtec doesn't work, I want my good friend standing by and ready. But I did get curious, so I looked up the drug interactions on drug.com and it said none exist. OK, nice to know, but I think if the situation arises, I'll avoid taking the chance. I do have oxygen tanks, but find they are only useful for mild attacks. In any case, that will be my backup if Nurtec doesn't work tonight. I'll wait a couple days before going back to the triptans. The only thing I'm puzzled over - if Nurtec works for 48 hours, why would I wait for my 1:30 AM attack? Why not take it now? Decision made - I'm going to start a dose tonight before bed - I'll post my experience in a couple days...
  5. Second Update from the OP Well Hallelujah and pass the ammunition. Last week I got a call back from my Doc's office, they needed help filling out a form from Aprila Healthcare for the O2 setup. They asked me all the medical questions again about our condition, stuff I know is in my record, but I'm in no mood to complain since it looks like we're making progress. Stuff like eye swelling, nasal congestion, consistent pain location etc (you know all the symptoms). She says she's sending the form over to Aprila and they should contact me. Sure enough Aprila calls me Friday to set up an appointment. I have to come in to be trained how to use the equipment. I went in for my appointment today, got the rudimentary explanation how to use everything, They gave me 3 small tanks to take away with me, mask, hose, regulator and carrying rig. They set me up for delivery of their largest tank, which is supposed to come this afternoon. They'll deliver tanks whenever I need them from this point forward. Here's the kicker - Its all covered by insurance! I was presented a zero dollar invoice when I left. After all the hassle, I felt like I hit the lottery. I guess calling my CEO and complaining to him about our health insurance may have helped. Apparently threatening to pull the account of 600+ people has a way of getting an insurance company's attention.
  6. You know, I don't want to sound like I'm wealthy or anything, but cost really isn't the issue for me. I'll gladly pay out of pocket. My problem right now is everyone seems to be saying that they won't sell it to me, even with the prescription and the cash. Bearing in mind, I'm trying to go the "medical" route, using medical grade tanks. I found a source on Amazon that will sell a filled industrial grade tank. I know that many have said over and over that the safety is not an issue, I just really wanted a clean tank, rather than one that's been sitting in an auto shop for the last 6 months, traded in and refilled. Latest update is that Apria said they'd do it, at my expense, if the doctor sent some additional paperwork in addition to the prescription. So what exactly is a prescription for again? Anyway, still playing phone tag with the doctor. Hopefully today I get something resolved.
  7. Update - Airgas, Here in Tennessee, will not deal with me directly, even with a prescription. The guy I spoke to said "It would be illegal for me to sell you oxygen". He referred me to Apria Healthcare, so it appears he gets the question often enough to know what to tell folks. Tried calling Apria - they still have some hoops to go through - need to call my doctor's office and have them provide the doctor's office notes and demographic information by fax (Hello, 1985 called and they want their technology back) I'm still not sure why these companies need all this additional info. You'd think I was getting opioids in bulk (In fact, I probably could get that easier than getting a tank of one of the most common elements on the planet) Anyway, doc's office is closed early on Friday, so yet another delay. Thankfully I'm not in cycle, so no real rush.
  8. Before I begin my rant, or preaching to the choir, I want to thank many of you who have shared your stories with me over the last few months. I'm currently off cycle, on the D3 regimen, and having just visited my GP yesterday for a 6 month follow-up, wanted to relate a couple stories: I guess I'm lucky. My GP is very supportive of my condition. He admits he doesn't see it very often, hasn't had a patient with it in about 20 years, but he listens to me and generally helps with the proper prescriptions I need without objection. This saves me from having to make special trips to the Neurologist, which is time consuming and costly. Yesterday I asked my GP to write a script for O2, and another to change my Sumatriptan from the auto injector to the vial. He did both without objection. He wrote the O2 script properly (15 lpm for 15 min, per attack, for Cluster Headache, and used the proper ICD10 Diagnosis code of G44.009, indicating that insurance should reimburse). He did balk a little at the D3 Regimen, but agreed to run the lab tests for the proper levels. He wouldn't condone the "ridiculously high dose of D3", but also understood that ultimately that was up to me. So, now I have a proper script for O2 and another to get the right delivery mechanism for Sumatriptan. I'm excited! I'm pumped! This is supposed to be the hard part and doc just agreed to everything, straight off. I carry my happy ass on over to CVS to get my new Sumatriptan script filled. Whoa there dude. Slow your roll. "See in our system, drugs are listed as red, yellow or green. Red means we can't get it, green no problem, yellow means its a maybe, and may possibly be gone soon. The vials you asked for are listed as yellow." Well can you order it or what? "Yes, just letting you know, we may not get it, and if we do, it might be a few days." Fine, will you let me know? "Sure" (Said with the same enthusiasm as the kid at Burger King having just been asked to make sure there are no pickles on your burger) Somewhat deflated, but not down and out yet, I roll on over to the local medical supply company in my town. That went something like this: Hi, I have a prescription here from my doctor for oxygen. Can you help me get this filled? "Do you have insurance?" Yes I do. "Well, we can't just give you oxygen. Have you had a blood test with blahblahblah results showing you need oxygen to breathe?" Well, no, I haven't, you see, I don't need oxygen to breathe. But I do have this prescription right here, from my licensed medical doctor, if you'll just take a look at it, I'm sure it'll explain everything. (Won't even glance at the paper in my hand) "Sorry, but a prescription isn't enough. We need lots more paperwork. You need to show you have a valid medical reason for it." (Me getting agitated now) I'm sorry, I must have missed something - I know I'm a little hard of hearing and maybe a little dense. See, I always thought that was the point of going to see a doctor, and getting a prescription. The DOCTOR, decides that a drug or treatment is medically needed and he writes a prescription. I take it to a pharmacist, and they fill it. If there are questions, the pharmacist can call the doctor. Since the pharmacy doesn't carry oxygen, I'm here to see you. So, are you a licensed medical doctor or nurse practitioner? Did you recently perform an examination on me and determine that I don't have a valid medical reason for this Oxygen? Are you qualified to decide what is medically necessary? "No, but the problem is your insurance won't pay for it - you want it for cluster headaches, right?" Yes, and that's the first intelligent thing you've said so far. But you haven't even asked me who my insurance provider is, so not sure you'd know straight off that they won't reimburse, but fine, how much to simply sell me the tank with the oxygen in it? I'll pay for it out of my own pocket. (Walks back to talk to someone else - comes back after a brief exchange with unknown unseen coworker) "It'll be $175 a month" Wait - its a monthly fee? I'm asking to buy a tank with oxygen in it. How do you sell that on a subscription basis? "Well, the fee is the rental on an oxygen concentrator. We won't sell you any oxygen in a tank." OK - let me explain again, My DOCTOR, performed an examination on me this morning in his office, and then determined that I need 100% pure oxygen @ 15 lpm for 15 minutes at a time. If you would have taken just two seconds to actually read the prescription I tried to show you, you would have seen that. I know that a concentrator won't provide that. So are you now attempting to countermand my doctors orders? Furthermore, I need this treatment for about 3 months out of the year. Why would I want to pay a monthly fee for something I wont use for 9 of those months? Basically, you're asking me to pay you $2100 a year for something that I can get on my own for less than a quarter of that. I can see the tanks in the back of your offices here, so I know you have them. What's the problem here? "Sorry, that's all we can do." Well, this seems at the very least, bad business. It's no wonder insurance companies don't want to reimburse when companies like yours are using practices like this. Obviously, I won't be back and will find some other way to procure what I need. Later on in the day, I called the insurance company, and sure enough they won't pay for oxygen to treat CH. I asked them why, but I didn't want to give the call center agent a bunch of crap for policies she didn't create and can't do anything about. She said she would send me a complaint form, but so far, that hasn't happened either. But it seems odd to me that they will gladly shell out hundreds of $$$ a year for my triptans, but wont give me $60 worth of O2. Somewhat deflated now, I'm still trying to find the best way to go on the O2. It looks like Airgas may be the best option short of going the industrial route. I'm going to call them today and see what they say. Anyway, if you made it this far, thanks for listening. I feel better just getting it off my chest.
  9. Hi Newbie, I have a similar history in that I experienced my first attack at the age of 19 (I'm 58 now), I was in the Army and the Army docs had no idea what they were dealing with so they just injected me with Demerol or Morphine to kill the attack. Didn't get diagnosed until roughly 4 years ago. I have what is referred to here as episodic attacks, usually once a year, lately twice a year. The attacks last about 45-60 days. Thinking back, I may have managed a year with no attacks, but it's hard to remember that far back. My General Practitioner initially prescribed Sumatriptan in pill form - this "worked" but took almost as long as the attack would last. After a couple years, I finally found a Neurologist and he prescribed Sumatriptan in injectable form. This is the single best treatment I've found to date, though with some side effects (more on that later). My Neuro also prescribed Verapamil as a prophylactic (preventive) measure. I took it for about a year before giving up on it, since it didn't prevent further attacks and I am already on another medication for hypertension (Atenalol) I'm currently using the D3 Vitamin regimen discussed at length on many posts here. I can't say if it works yet, since I started it at the end of my last cycle, but I'll keep it up until I feel like its not worth the trouble. Most everyone here talks about oxygen as an abortive measure. As I write this, I'm going through the process to source all of the components for that treatment. I have a strong belief that it will help, just based on how well I know my own body and all the positive stories here. Getting oxygen is a pain. I got my GP doc to write me a prescription without much trouble at all (a lot of people here talk about that being one of their biggest challenges), but that's where my challenges began. I took my prescription to a local medical supply, long story short, they refused to fill the prescription. I even offered to self pay, but it was no dice. I'm calling around today and hope that Airgas will help, but if they won't, I found a source on amazon for an industrial tank, prefilled, and I can go to Tractor Supply or the local Farmers Co-op to get it refilled. I talked about side effects with Sumatriptan - know that this drug is a powerful vasoconstrictor. That's what relieves the pain in the head, but it also gives me a heavy pressure feeling in the chest as it increases blood pressure. Constriction of arterial vessels increases systemic vascular resistance, which leads to an increase in arterial blood pressure. Constriction of venous vessels increases venous blood pressure and increases cardiac preload and cardiac output, which increases arterial pressure. All of this is not really good for an overweight smoker in his late 50s. I won't give up the Sumatriptan, but I've taken a couple of steps to help. First, I talked to my Dr. about prescribing a vial instead of the preloaded autoinjectors. Many folks here believe we don't really need a full dose to get relief. So, I'm hopeful this will help. It also means I don't have to hoard as much of the drug during my off cycles so it lasts through the attack season. (Insurance company only allows for about a dozen injectors per filling, so I make sure to buy all year long so I have enough on hand when attack season starts. Second, as mentioned above, I'm getting oxygen. Other things that help - everyone is different, your mileage may vary - Caffeine - energy shots or coffee. These can make things a little more bearable, but its not always helpful since most of my attacks happen at night when I'm trying to sleep or get ready for bed. Sleeping in an elevated position - I sleep in my easy chair during attack season. Sometimes I can get through the night, sometimes not. I find a nice long hot shower to be helpful when nothing else is available. I avoid alcohol during the attack cycle. Any amount can trigger an attack, within 30 minutes of the first drink, like clockwork. I've talked to a few folks here who share the same experiences as me, high stress is good to prevent the attacks, relaxation brings them on. Strange, but true, at least for me. This leads to my attack cycle being very exhausting. When the cycle ends, I sleep for days just to get caught up. I hope you find my story helpful and you find relief.
  10. Thanks so much for the kind support. Regarding travel with all the vitamins, I'm going to take Jonathan's advice here and get photocopies of the pill bottles, then put everything in ziplocks. I agree that TSA shouldn't care, but every once in a while you get someone on a power trip. Last week, in Minneapolis, they did a full scan on my luggage because my deodorant was right at the 3.2 oz size limit. Of course they do that only when you have a tight connection... Jonathan: Dude, I can tell you stories. Everyone wanted to buddy up to the commo guy. I was in tactical outfits (101st Airborne, 2nd Infantry Division and the like), meaning out in grunt land. My rig was like the Taj for most of the infantry guys. Warm in the winter, cold in the summer, sheltered from the rain, snow and sandstorms. Its well known that the Army takes better care of its equipment than its soldiers, and that commo gear had to be maintained at just the right temperature. So, bonus, air conditioning in the desert! Toasty warm on a mountaintop on the DMZ in Korea. The microwave gear was warm mostly because amplifying that much power just generates heat as a natural by-product. On the other hand, you definitely didn't want to be in front of the big dish feed horn. The fresh crop of dead birds could attest to that. I think I would classify my GP as passive aggressive, and not very aggressive. When I told him about my challenges, he liked the idea I had about stockpiling. He's a GP, and easier for me to get an appointment with than the Neuro. He's really learning about this as I do. He won't go too far out of his lane, but he'll give me just the amount of support I need, nothing more. Well, in truth I was in cycle, and peak attack when I went to the O2 shop with my prescription from my Neuro. They started giving me a bunch of crap about Medicare (I don't have Medicare, I have private insurance through my employer). They wouldn't even look up my insurance. Then they looked at me like I belonged in a homeless shelter and said I probably couldn't afford to pay for it out of pocket. Now mind you, when I'm not traveling, selling multi-million dollar communications software, I do dress pretty casually. But I thought it was presumptive of the lady, so I gave her a few choice words that would make a guy with tourettes blush, and left, not to return. I figure I'll try again with my GP - get a script from him, go to a different shop. If that still fails, I'll definitely go the welding shop route. At least at a welding shop, the guys are used to a few expletives... I still doubt I'll travel with it. My itinerary is just too complicated and subject to change at the drop of a hat. Oddly enough, I seem to have fewer attacks on the road, in cycle. I haven't been able to figure that one out just yet, but the frequency of attacks is definitely reduced. Thanks again to all of you.
  11. Hello all, Super long post coming. Sorry, I feel like i have 30 years of frustration to get off my chest. I found this group a couple weeks ago and have been digesting information since then. I can't tell you how relieving it is to know that I'm not making this stuff up in my head, that it's not just a headache, get over it. I'm episodic and I've been suffering from this since around 1980, got the first attack when I was in the Army at the age of 19 or 20. I'm 58 now. I still remember that first attack because it was without a doubt, the worst one ever. I really thought I was gonna die, and so did my buddies in the barracks. They took me to the hospital, where I was given Demerol. Nice, immediately took away the pain, but as you all know, did nothing for the next time. Of course, the Army being what it is, they said to Take Motrin and hydrate. For those not familiar with Army docs, this also happens to be the script for sucking chest wounds on the battlefield, or any other medical issue. (Army joke - see attachment) I've taken so much Motrin over the years, I'm amazed my liver has any function at all. (If any of you were also military, I'm looking for help with the VA to get some disability rating for this - I've heard it can be done, but not hopeful since I've been out so long) I worked in the communications field (still do), working with Microwave and Satellite communications systems. I've often wondered if those high frequencies at high power had anything to do with causing this condition, but my Neurologist thinks not. Still, I dont think he understood the the power levels we're talking about here. This isn't a microwave oven or a cell phone power level. This was powerful enough to send a signal around the world by bouncing it off the troposphere, or out into space. Maybe I'm wrong, but it always felt like it was worth looking into. It took me a while to realize that there are triggers. From what I've been reading, my triggers are relatively few. Alcohol and sleep. Sometimes, I would try to get drunk faster than the attack could take over. That never really worked and made for a really crappy night out. So now, once I realize I'm in a cycle, I just stop drinking for a couple months. Sucks, cause I really like a good beer or a good bourbon. I have found that if I get drunk enough, I can get a full night's sleep, but the next day really sucks. I fly for work regularly, almost every week. The only time I have an attack in the air is if I'm stupid enough to have a drink before or during the flight. So airline travel itself isn't really a thing for me. Likewise, trips to the dentist don't bother me. I have had extensive work done, full implants, with only 8 of my natural teeth remaining. So I'm no stranger to the dentist's chair. I get the nitrous every time, even for cleanings, and it's never been a trigger. (Funny side note - when the attack is in full swing, I get pain in the teeth that don't exist - go figure) I also saw where epinephrine is a trigger to some, definitely not me. I once had an allergic reaction to Aleve, so bad my airway closed off. Epinephrine saved my life, with no trigger effect at all. I smoke, sometimes heavily, but this seems to help more than hurt with the attacks. I wasn't officially diagnosed until about 3 years ago. After seeing many a GP over the years and being told it's probably high blood pressure or stress or migraines, I finally insisted on seeing a Neurologist. He asked me some questions and then, without missing a beat said I have every classic symptom of Cluster Headaches. Hallelujah! It has a NAME!! He told me to throw away the Sumatriptan pills my GP gave me, prescribed Verapamil and Sumatriptan Injectors. We talked a little about other options, but he left me with the impression there really aren't any. I've since stopped taking the Verapamil, I'm already on Atenalol for BP, and the Verapamil didn't really prevent anything, so why bother. I guess I may have had a remission for a year here or there along the way, but it's been fairly consistent when the cycle arrives. Always the Spring/Summer change, sometimes Fall/Winter (in the middle of a cycle right now as I write this) I've learned over the years how to cope with the intense pain without the screaming fits I had in the beginning. I thought that meant maybe the pain was reducing, but my wife thinks I'm just used to it. She describes it as low groaning. She can predict an attack before me, just by observing my eye and stance when walking around the house. Apparently i change how I walk when an attack is imminent. I've started the D3 regimen yesterday. Sticking to it may be a challenge, simply because carrying all those pills on a plane could be problematic going through TSA. We'll see on my next trip. Likewise, my travel schedule is one of the reasons I've never invested in Oxygen tanks. Logistically difficult to carry when traveling. I never leave the house without my Sumatriptan injectors and TSA doesn't seem to mind that I have half a dozen of them in my computer bag. They have been a godsend. I've read with fascination about those who say its made the cycle worse, but so far, that's not been my experience. I'm looking forward to positive results from the D3. I've tried marijuana in the past. It's really not my cup of tea to begin with. It didn't do anything for the pain, and I didnt like the combination of being high and being in pain, so take that one off the list. A friend of mine owns a CBD shop, and he keeps telling me of those benefits, but I haven't tried that one yet. I've been reading a lot of the Busting stories and information. I'm not sure how comfortable I am with it, primarily how I'd source it or grow it reliably. I did try something like this many years ago recreationally, so I have no moral objection to it, I just have to admit I'm a little scared of the possibility of getting something other than what I intended. The information about ingesting poison mushrooms are enough to make me want to take roundup to my yard right now, and just scorch the earth. If I'm confident with the source, I may give it a try, but will probably have other questions first. I'm going to call my GP today and see if I can get a script for O2 for those times when I'm home, but last time I tried that I stormed out of the O2 supplier's office in complete frustration. A couple of my favorite coping mechanisms: Showers - it doesn't matter if it's hot or cold. If it's hot outside, a cold shower feels great, and vice versa. Just get in the shower and soak as the attack wears on. I usually do this for the middle of the night attacks, so I can fall asleep right after. Ice Pack - I have a gel pack in the freezer. It's about 6 inches long, 3 inches wide and has an elastic strap on it that allows me to wear it like a headband. I just strap this on the right side of my head, from the eye socket back to the temple. It really makes the intensity of the attack easier to tolerate. I try not to take Sumatriptan too much - for example, I'm at the peak of my cycle right now, meaning 4-5 attacks a day/night with shadows in between. I have a feeling the sumatriptan causes some heart issues, as I feel increased chest pressure and slightly labored breathing immediately after injection, so taking one every 4 hours seems dangerous to me. I try to limit it to just that first attack of the night so I can get some sleep, but sometimes I feel like I have no choice but to do two or three a day. Also, I have to ration it. My insurance company says I should only need 18 injectors for a 90 day period. So that's their extensive medical opinion anyway. I've tried explaining to the emotionless human robot on the phone how long a cycle lasts and how many attacks I get, doing the simple math for them, all to no avail. So now I have a reminder set on my calendar, to go back and get refills even when I don't need them. Idiots. So if you're still following along after that long introduction/rant, congratulations and thanks for reading. I welcome any support or advice, and look forward to sharing my experiences with you all. Again, it's just comforting to know there are others out there who understand exactly what I've been going through all these years. Thanks for that.
  12. Just replied to the other thread about flying - I fly every week for work. No choice in the matter if I want my bills paid. I've not been able to attribute a CH to the flight or the pressure/altitude change itself. If I'm off cycle, nothing happens. If I'm in a cycle, something else will trigger the CH. Most of my flights are non-eventful. That said, if I do get a CH while airborne, they are particularly severe. Sitting in a confined noisy space just makes everything suck more. I always travel with my sumatriptan injectors, and am not shy about injecting right there in my seat. Arranging oxygen at my destination is problematic. First off, I don't regularly use it, even at home. I've had problems getting it prescribed and maybe I'll look into welding supply - learned that one here. But getting it set up at the far end for flights just won't work for me, since I cover 18 states in my territory and I can't predict where I'm going to be from one week to the next. Just can't manage the logistics. Triptan injectors are my only saving grace - but to be clear, it's not the flight itself that's a problem, its being away from home in a new or confined space with few options and increased stress levels. Hope this helps. Your mileage may vary.
  13. Hi "ThatHurtsMyHead"
    I'm new here, been a CH sufferer since 1983, only properly diagnosed about 4 years ago. Yes really. 30 years.

    Anyway, the reason I'm writing on your feed - I was reading in another post that you were in the military and were misdiagnosed. As was I. I was a communications specialist in the Army (Microwave communications - often speculated about cause and effect, but that's another story).

    I had my first attack in the military. It was without a doubt the worst attack I've ever had, so much so the barracks CQ had me sent to the base hospital. There, they didn't seem to know what to do, so they gave me an injection of Demerol, and sent me on my way. It worked, but then you could've hacked my arm off with a grapefruit spoon at that point, and I wouldn't have felt it. 

    No doctor ever got past the the basics. Hell, I didn't even start putting the symptoms together for a few years. There wasn't an internet then, so not a lot of information available to the average lay person. 

    My question to you - did you ever get a disability rating from the VA? All these years later, I'm being told by several friends I should go file. But other than the possible existence of admission records from the base hospital, I have no real record of this being a problem while I was in. Due to a death in the family while I was out-processing, my paperwork was rushed, and I kind of got screwed on a lot of stuff. 

    I'd appreciate any help or advice you can offer. 

    P.S. - I'm now maintaining well with Sumatriptan auto injectors. My corporate insurance plan only deems it necessary to give me a dozen every 3 months, so I make sure to get the refills even when I'm off cycle, so I can stock up. I'll be looking into "busting" after doing a LOT more research. 

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