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Scared to Death


Ripper
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  Help Please,

I just came off the 02 tank at home after my 3rd hit of the day, the 1st 2 were at work and I wasn't prepared didn't have the E tank with me there. The 1st attack I did have a monster Extra Dry and used a ice bag to abort in 20 minutes.

The 2nd one hit and I tried the ice only...OH MY GOD I can now claim to know what a kip 10 is...unfortunately, I shut off the lights and computer and rolled around in the office after what I think was an hour I started to come out of it and my neck was tight as a drum and my arms were tingly??

I'm freaking out because we are leaving on a cruise Friday night for a week, going to have to fly to Florida on the red Eye and board a ship that I couldn't secure any 02 from Apria, the cruise line says they have 02 in their emergency room, I would rather have it at my disposal.

I have been skirting the big hits with 02 and some 50 mg Sumatriptan for 3 months(Spring Solstice) and I'm praying this is the beasts last hurrah before my cycle ends and it's going out like a frickin Lion.

Gonna call my doc tomorrow and see about getting a script for either Imitrex injections or the spray but I'm scared sh*tless about being out of my comfort zone.

I had read posts about people putting sputs under their tongues or building capsules of ground up MM on trips, but I'm traveling with family and probably shouldn't try dosing to hard'

Anybody out there have any advice or similar situations I might learn from?

Dave

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I remember seeing a thread on the sister site started by a guy who was in cycle and was wondering whether to go on a planned fishing trip anyway, knowing he'd likely be hit more due to not having many CH fighting options at his disposal. I think EVERYONE except for me advised him to definitely go.

Yep, except for me. But that's because I'm episodic, I can reschedule trips for when I'm not in cycle, and pre-busting I was able to make it through an 11 week cycle either aborting or preventing every single hit with meds, O2, etc.  No trip is worth being hit to me. Everyone may still disagree, but if it was me I'd bail on the cruise, and focus instead on going completely hog freaking wild strategizing and building up contingency arsenals for beast counter-bashing (that preparedness to be able to dodge and weave when the beast shifted his tactics is how I beat him last time).

I can see you're taking serious steps to be as prepared as possible with the prescriptions requests so that's good IMO. I think you should demand INJECTIONS come hell or high cruise water - you can potentially get 3 aborts from just one injector (!!), which means 6 aborts a day without even coming close to an OD level of dosage. That completely beats the ever living hell out of the inhaler scenario if you're getting hit often, and could make or break you right there.

I'd go for the sputs too (I haven't actually tried 'em, but am impressed with what others have reported).

As far as the plane rides are concerned, besides the imitrex and sputs, loading the pockets with energy shots can be a good thing! I'd also buzz the cruise peeps and make sure they'll have suitable energy drinks / shots on board. If not, or if you'd like to save $, you could pack a buncha energy shots in the luggage.

One good thing about an imitrex inhaler: it can be used on the plane right during take off or landing etc. when the lavatory isn't available for that injecting we tend to find ourselves doing at 30,000 feet.

I know some headbangers will call in the really big guns and go for a prednisone burst for a vacation trip - especially if it's a shorter trip, but that of course carries some definite risks of it's own, and it's a strategy that backfired pretty badly recently on poor Ricardo during his recent vacation.  :-/

The fishing guy? I think he came back and reported he was glad he went on the trip. That was one time I was very glad not to be able to say "I told you so".

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GET THE IMITREX INJECTIONS!

Took a recent trip to France for a two week vacation.  I live in California and was in a nasty chronic cycle at the time.   Pre-busted three times with good doses of Mushies and was doing well the few days before departure.  Of course, no O2 was available overseas (unless I was willing to spend about $1600), but loaded up on 10 injectors before going.  I had never used the Imitrex before and had always saved it for the "last resort".

Short story...

The whole time in Europe wasn't too bad with several K7-8's.  Cold air, Energy drinks and silent screaming took care of them.  They were all late at night and most likely triggered by French wine.

The ride home was a freakin nightmare.  Two hours into an 11 hour flight and I got hit harder than ever.  The poor woman sitting next to me must have thought I was turning into a Zombie.  I cried, trembled/winced in agony and crushed my head in hands for a long time.  Finally got up to use the Imitrex in the restroom and fell in the aisle.  Crawling the last 20 feet, another passenger helped me and I finally got inside to fire away at the injection.  The relief was rapid and was almost back to normal when returning to my seat.

Hallucinating in pain at 35,000 ft over the N Atlantic Ocean, locked in a tiny aluminum box and shooting up drugs that I'd never tried ...... was the lowest moment in my CH career. 

My advice is to stay ahead of the Beast.  Use meds when the first shadow appears and always keep an eye out for the "safe place to hide". 

I gave my O2 tanks a big hug on getting home.  All in all, I'd do it again!

Good luck, I'd say GO FOR IT!  Have a great time!  Wish you a PF vacation!

weatherman

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Thanks Bejeebers & weatherman

Calling the doc this am, she's always listened to my suggestions and we've even talked about MM, I'm kind of teaching her about CH. Last physical she even prescribed d3 and magnesium because she had been studying. I hope we can get a script moving in time, I'm going to go for the injections. Hope they come with instructions. Gosh I hate needles, but I really hate attacks more.

Weatherman I had simular plane trip with a 94 year old going to Vegas. Was drinking with customers in the terminal and as soon as I walked through the cabin door Bam one hit. I held and squeezed my head for 1/2 hour. When I finally started coming around and looked at her she probably thought the same Zombie thoughts. Didn't want to scare a 94 yr old lady though.

If anyone else has more advice, I'm listening up to 11:40 pm Friday night MST.

Dave

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I'm going to go for the injections. Hope they come with instructions

Hey Rip, here's a link to the instructions for partial dose injections with an imitrex syringe:

http://www.clusterheadaches.com/imitrex.html

This has been a good tried and true method, widely used by CH'ers for 14 (!!) years now. I recommend printing it out immediately, and like I did, keep the printout in your wallet so you'll have it with you wherever you go, until you have the procedure memorized.

Self injection is surprisingly easy and often practically painless if you pinch some abdomen skin/fat to the side of the navel and inject there. You very well may cringe and flinch mightily like I did the first time I self injected, but then it's like "WTF?! Why was I frightened of this like a little cry baby!?" This really truly is nothing compared to the beastly alternative. The needle doesn't have to go deep BTW, just "under the skin" is how I've seen it described, so I got in the habit of putting it about half way in. Try not to hesitate when you're in position, just frikkin' go for it immediately, and realize how easy breezy it actually is (this is the kind of pep talk I gave myself  ;D).

6 mg syringes have been standard forever, but in recent years there's been talk about 4 mg versions hitting the market. I would specify 6 mg, and you want the "kits" where they give you the syringes that are meant for loading into an auto-injector contraption (screw that mechanical auto-injector though - it may come as part of the package, but it's dead weight when using partial doses - you'll be tossing it over board  :D).

After several injections, chances are you may at one point hit some little capillary just under the skin that can leak for a couple seconds. It's meaningless and inconsequential - it just manifests as what looks like a dark bruise, and it could make for a nifty tummy tattoo during your sun bathing cruise.  :D

I love your doctor  :-* ;D. While you may need a super expert headache specialist neuro at one point, it sounds like she's the type who, just because she didn't receive decent training regarding CH, she isn't letting that stop her from researching it on her own, and that makes her a voonderbar doc indeed.  [smiley=thumbup.gif]

Here's hoping the beast will have completely finished his going out like a lion antics before your vacation launch.  8-)

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You've already thought of this, I'm sure.  Remember to bring some strong energy drinks on the plane. (I think they might sell RedBull on the plane, but if you can pick up something stronger at an airport concession, such as a Monster or RockStar with more caffeine and taurine, that might be better.)

I had read posts about people putting sputs under their tongues or building capsules of ground up MM on trips, but I'm traveling with family and probably shouldn't try dosing to hard'
  Just realized it's probably too late for this advice, but if you have RC seeds, a few ground up ones under the tongue are reported to work well, and if you also wanted to dose, RC would affect you least.  And of course since they're legal, you'd have less fear about that.   

From the posts I've read, a shroom sput almost certainly won't cause any tripping. Here's a post from Ricardo about one possible way to prepare one: >>What I bet would work really well would be to make your mushrooms into a tea using as little water as possible.  Then put the tea into a small tray and use really low heat and (maybe some silica gel) to evaporate all the water out of it.  (not that hard, done it a few times).  What you're left with is a tarry black goo, and if SPUT is working for you, I bet scraping up just a little and putting it under your tongue would work pretty well.<<

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Weatherman with all due respect....wonder if they dropped the 02 mask if it would help???Doubt they would do it as all masks would drop. Can you not take 02 with you?

Did you explain to lady next to you or family with you to explain?

sorry about trip

CHS,

Thanks for the reply ..........some extra info

 

First, the O2 masks (yes, everyone of them on the aircraft) can only be deployed when pressure-activated sensors detect a sudden decrease in cabin pressure, usually at about 8 psi, or 14,000 feet.  As far as I know, there is not a manual deploy button for the O2 masks to drop from the ceiling.  It's a different story in the cockpit.  The flow rate is not variable and set between 3-5 lpm.  Several different systems are used to generate/dispense the O2, but once its started, it cannot be shut off, as in the chemical generator variety that downed the ValueJet.

Second, you can NEVER travel with O2 tanks on any commercial aircraft.  That will get you introduced to the CIA/FBI very quickly, if you ever make it past the terminal inspectors.  The fine is near 25K and you'll undoubtedly do jail-time.

Portable Oxygen Concentrators can also only supply a max flow rate near 5 lpm and are approved for air travel, provided you supply the required documentation.  Supply equipment, masks, hoses, regulators, are OK to travel with.

Some medical oxygen requirements can be met by the airlines.  They all have different rules and costs.

Apparently in France, all of their O2 is stored, delivered and used in liquid form.  It's illegal to personally transport and the equipment necessary to convert it to gas is complex and expensive.  For a one week stay at two locations (Paris and LesBaux) I was quoted $1600 to deliver and set-up O2.  I decided to pass on the option.

Third, I most certainly spoke to the nice lady sitting next to me as soon as I boarded to plane.  She was sympathetic and like me, hoped it wouldn't happen.  I got to hear all about her migranes that took THREE extra-strength aspirin to cure.  My wife sitting on the other side did all the communicating with airline personnel for what I needed and that there was no danger from me exploding.

Yes, I did have Energy Drinks, cold water and ice .... but they didn't help at all.

Imitrex saved my bacon this time  ;)

weatherman

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Hey Bejebeers and CH Father, thanks for the Great Advice especially Bejeeb, I printed out the instructions and they look easy enough to follow, won't know till I open em up and try em out.

YES I got my 2 boxes w/ 2 injectors each sitting here looking them over. 1st lady at Walgreens said the insurance didn't approve it and I was ready to pony up $450.00 for 2 boxes when the actual pharmacist came over and said let me "Work some Magic" and she got them both for $5.00 I' Love that lady...more money to spend on the trip.

Thanks again to everyone who offered up some helpful advice...This site ROCKS with GOOD people. Hope I can repay the favor someday. :D ;D

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YAY for Walgreen's pharmacist.  :)

Between your beefed up arsenal and the fact that your cycle is likely in it's last throes anyway, it's starting to look to me like you're going to have one great vacation. 8-)

Bon Voyage Ripper. :) 

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We are back to Florida, what a great trip it was. Thanks for the advice and well wishes  ;D ;

Would not have survived without the extra ammo. I had to use 3of the 4 injections I took with me, as recent as the line in customs comining off the ship..What a game changer. I also used a technique I saw others had luck with, hot long showers help me abort 3.

I also found out bacon is a big trigger for me. I had attacks 2 mornings in a row. I need to work harder on trying to disassemble the injections, I just did full 6mil each time.

The wife's looking forward to tagging me at least once, she still owes me for the hormonal shots I gave her when we were trying to get her preggers.

Thanks again everyone here for useful and timely info.

Dave.

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Glad you had a great trip!

We'll not let the Beast mess with our enjoyment of life ..... EVER!

I spent way too much time (in the early days of my CH) trying to avoid situations that would inconvenience or embarrass me.  Learn your triggers, keep the abortives handy, bust when the cycles are highest and keep in mind safe places to ride out the worst times.

Best approach is to stay ahead of the Beast and attack when he's the weakest.

It's definitely an enlightening experience and just another weapon in your arsenal.

weatherman  ;)

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Back home Saturday 12:48 am, phew what a day. I did have to use the final injection just before landing @DIA, again worked great within a few minutes.

I brought this empty home where I can practice dis assembly to administer smaller doses if possible.

Question to anyone who can help, I have the "Sun" pharma injectors and I'll be darned if I can follow the directions Bejeeb's sent me on breaking this down.

Do I have a newer version of the syringe that is tamper proof? If anyone else uses the same Sun injectors and is capable of altering this can you send me a reply or possibly a link. Now I'm going to try and call in another refill on the Imitrex and see if the insurance will allow that so soon.

Oh and by the way if you do ever go on a Royal Caribbean cruise, try like hell to have enough ammo, they won't allow 02 in the rooms, and when I went to the medical facility to inquire about the use of their 02 for the Cluster Attack I was suffering they looked at m e like I was from another planet and said they didn't know how to charge for the 02...So they said $50.00 for the 02 and $100.00 for the use of the ward. I thanked them and told em "I was feeling better"  sheez!!

Dave

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Do I have a newer version of the syringe that is tamper proof?

Dammit. I wouldn't be surprised if that is the case indeed. I hope you can dig up some good info on how to tamper with it (remove syringe) anyway.

...Royal Caribbean cruise....they won't allow 02 in the rooms

I guess that shouldn't be too surprising since a dropped O2 cylinder can apparently be quite the missile, and they're probably on guard against the old boaty McSinky routine.  :D I remember one O2 delivery guy telling me he thought nurses were generally lax in their handling of the cylinders, and he knew of one who had dropped one. The valve got knocked off and the cylinder shot all the way down the corridor, punched through the wall, then continued flying outside.  :o

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