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Hello everyone, I found this site a few weeks ago and have been very much appreciating all the wonderful information and advice contained within. It's also very nice to know there is a community of people that have been going through the same types of things. Much love to you all! After two trips to the emergency room two nights in a row about 5 weeks ago, I was referred to a neurologist. It took about a month to get the appointment and I was prescribed sumatriptan injections (6mg/0.5ml per injection), oxygen and I was switched back to verapamil 120/mg 3x per day after having been on propranolol a while and verapamil 80mg 3x per day before that by my nurse practitioner. Anyway, I'm trying to get myself set up with both. I'm normally pretty good at finding information, but I can't seem to find any reference to either of these questions. I'm willing to bet they have been answered, but my head right now just won't let me investigate and much as normal. Sumatriptan When I finally got enough money to get a partial fill of my prescription, I was expecting to get the auto-injector form like what was on my GoodRX coupon. When I got home, I found that I had simply received 5 vials each containing 0.5ml. Apparently enough for one dose each. And that was $122.00 haha. Wow. (No insurance, but the coupon sure helped!) I've seen on this site where most people say that 3mg is enough for an injection treatment, so I have two questions: 1) Is it OK to use each vial for two doses? 2) Is there a certain size/gauge syringe that I need to be looking for? Tubing size for welding (CGA-540) regulator adapter I have ordered the Cluster O2 kit from clusterheadaches.com. However, I don't see in the description what the inside diameter of the tubing is. I'm going to guess 1/4"? I'm going the welding oxygen tank route, because even here in Dallas, TX I'm having a hard time finding large medical oxygen tanks. I can get what's probably an M size tank for $250 with $25 refills. But I need to know what size adapter I need to get so that the tubing will connect to the regulator. Does this one look OK? (Dixon OA61 Oxygen Hose Brass Fitting, Coupler, 9/16"-18 UNF Right Hand Female, 1/4" Hose ID Barbed ) https://www.amazon.com/Dixon-OA61-Oxygen-Fitting-Coupler/dp/B007D5KS2A/ The regulator I am looking at is this one (Victor Technologies 0781-9400 G250-150-540 Medium Duty Single Stage Oxygen Regulator, 150 psig Delivery Range, CGA 540 Inlet Connection) https://www.amazon.com/Technologies-0781-9400-G250-150-540-Regulator-Connection/dp/B00BZFB2TC/ Thanks! Thanks to everyone for all the long-distance support even when you didn't know it. Super glad I found this site. Best regards, Terry

Probably need to up the dose.

I'm feeling some tension in some posts here. Everyone has a bad day, week, month etc. Let's not make personal jabs. I see a lot of good intention on posts that are being interpreted at a different angle. Back on the thread subject: I used a very strong mint lotion type stuff on my temples a long long long time ago. It seemed to help some, but wow... Don't get it too near your eyes. J

Thanks so much for all the tips! I'm looking at the 2 suggested regulators right now. @jon019 I guess I am fortunate! It appears that I can just use the insulin syringes and draw out exactly what I want the good old-fashioned way without having to tear anything apart like I've seen in other posts. Surely the Walmart where I got the vials will also have the syringes. This has been so helpful. I very much appreciate all the great feedback.

you got LUCKY...ea vial is 6 mg suma in 0.5 ml solution....potential for 15 aborts vs 1 or 2 for a statdose (as many get by with 2-3 mg of suma) ...so just draw up partial amount (found by trial and error) and save the rest for "next time". I used 1/2 ml 30 gauge insulin syringes....BUT much prefer 5 mg Zomig nasal spray...as it had nunna the ooky side effects of suma (for me)...

Miza', I'm not sure you really need that expensive of a regulator. There are a bunch at amazon that already come with the adapter (or at least it appears that way from the pictures). This one, for example, makes sense to me: https://www.amazon.com/PSI-KING-Welding-Oxygen-Regulator/dp/B01DAYCJWO/ref=sr_1_5?crid=2DOJUIMBLZXIH&keywords=welding+oxygen+regulator&qid=1556763640&s=industrial&sprefix=welding+oxygen+%2Cindustrial%2C156&sr=1-5. I also feel very confident that the ClusterO2 Kit tubing is standard size and will fit on that adapter. But you might want to be sure this is confirmed by someone else. If you are going to get the regulator you mentioned, it does look like that Dixon adapter will be fine. Less expensive plastic ones are available at amazon and at many hardware stores. As for the syringes, someone once posted this here: "1ml "insulin" syringes with thin 33-gauge needles work great. Don't let your doc or pharmacist try to convince you that you need a larger gauge for "draw up."" That's the only thing I remember seeing about syringe size, and I don't know anything about your other question regarding using a vial more than once. A lot of people get aborts from 2ml. Suggest you also consider getting a smaller O2 tank for portability. 40 or 60 cu ft. And you might want some kind of rolling stand for that big tank.

For Welding M-tank 02 I use this Oxygen Regulator Standard Body-CGA540, 0-25 LPM , you can search amazon , because I had hard time finding a correct fitting for 1/4" tubing. SOme people are suggesting as far as going to 40lpm, but 25lpm works for me.

Reminds me of Woody Allen's joke, "Sex isn't dirty, unless you're doing it right." As I recall, one or two posters have suggested that not actually completing the act is the secret to stopping an attack. So actually doing it "wrong" might in fact be the secret to doing it "right." (This might also be within the posted materials, but I'm not going to look.)

I keep O2 in my car and office at all times. I also have imitrex available at all times if I need a quick abort. Until recently I only got hit at night and rarely encroached on work. Busting has spaced out the cycles considerably but I am rarely less than 5 minutes away from O2 or injection even when I was 2.5 years pf.

I think I'm coming late to this thread but I have notable experiences. I have always felt that triptans (migrinal, imitrex, emerge and others) cause rebounds. I had a transient ischemic attack (TIA) in 2013. This resulted in my passing out while driving and mayhem ensued. My neurologist at the time led an extensive study and found that it was related to triptans. In 2015 I had an enlarged heart and arrhythmia develop. The Dr's felt it was related to a virus but they had no conclusive proof. I've always felt it was related to triptans which I still used at the time. For me triptans are not worth the trouble.

I started getting clusters when I was 16, just turned 39. I’ve just gotten through another 3 week cluster episode. I used to get them once a year lasting 3-4 weeks with 3-6 attacks a day. As I’ve gotten older it’s now every 2 years. Like clockwork. Early on, large doses of caffeine would sometimes abort a headache. I’ve tried all sorts of treatments, dangerous drugs, more recently verapamil and a corticosteroid. What I’ve found is that the headaches are just going to come. The verapamil will help for about a week, but then my body’s back on the clock to make sure I get a solid 3 weeks even with the interruption. Tactics I’ve learned over the years: breathing hot steam at the onset can give some relief in the very early stages; playing tricks with time - I’ll take whatever drug I have available, usually zomig nasal spray, and tell myself it will start to help in 5 minutes (which it doesn’t) just any kind of trick in my mind to get me through the time; lots of pacing, rocking on hands and knees; this past attack I decided to try pot. I’ve never done it before but honestly I think it was the most effective tool I’ve used to get through the pain. There is nothing that helps during the height of the pain, but it relaxed my body and I was actually able to lay down for the majority of a headache, which is a miracle for me. It would also help me go to sleep. The terrible anxiety, fear and depression that come along with the cycles is all part of it for me. Being able to lay down and go to sleep despite knowing I’ll wake up in panic at 1:00 A.M. is huge. Sorry, this is my first time to post and this is long. Much love to you guys out there going through this. It gives a person a special perspective on suffering for sure.

Personally I'd switch doctors if one laughed at me.... Internet based cluster headache communities helped save my life. I have no time for self important gasbags who believe they know it all.

I take 20 mg of Melatonin every night sometimes adding a 25mg of Benadryl depending on the season. I still get hit sometimes areoung 3am and take a 5hr energy shot without it keeping me up at all. I know everyone is different but if you are getting up every 2 hours anyway it might not be a bad thing to try. Give it a try on a weekend or some time you have nothing planned for the following day just in case you were to stay up a few hours after drinking one. The Melatonin and Benadryl were added to the D3 regimen I take and did help with the night hits. I also slept in a recliner for a week or so to keep my head elevated a little and that also helped.

Use of vials is off most insurance radar. Generally you can get 5 vials (6mg) which can be 3 doses each at a cost well below the autoinjector. Glad you found a better solution. Just be careful not to overuse imitrex as rebounds suck as much as clusters..

"units' is EXACTLY the right word.... insurance-ese is like a foreign language...clusterheads gotta learn it... ...and always keep in mind....insurance companies operate in a twilight zone of up is down...black is white...yes is no...no is yes...don't believe what I say on Tuesday because it will change on Thursday. So, NEVER accept the first answer...and NEVER accept NO. It's a GAME...ya need to learn how to play...don't get mad...get busy. They WANT you to quit...DON'T. Use their own tactics on them...persistent refusal doesn't make them right...refuse to lose...sometimes they give up (THAT'S what they hope YOU do!). Sometimes they quote FALSE reasoning...as in: "that is not a medically acceptable/necessary/approved treatment for you". THAT would be known commonly as "bullshit"....because then they would be practicing medicine without a license...without having SEEN you as a patient. Get thee a willing Doc to fight for you....sometimes all you need is a "letter of medical necessity" indicating THIS is what the Doc has decided YOU need. Stuff in writing like that scares the pants off the "green eye shades" in the basement of Screw-You Insurance Company ( that's ALL of them...I don't care what the name on the bldg./website says). Vials vials VIALS...YES!! Twice the bang for the same price.....with no "McGyver-ing" involved. If your Doc...for some unknown reason... won't prescribe...ask the Pharm to sub out the Stat-doses for vials, and get a box of insulin needles. Try multiple pharmacies if necessary. As one Pharm told me...it's the SAME med...SAME price....doesn't matter to us. One way I got past limits: when the requested triptan script called for 12 ( I really needed 18)...the insurance company only approved 6. The Doc said Okayyy...watch this....and wrote another script for a different triptan (smart/savy lady). Approved without question...at a higher total cost to them than just giving me the 12 in the first place. YES...I know NOT to mix triptans...I ALWAYS waited at least 24 hrs between different meds (per Doc). It would be funny if there weren't fellow clusterheads suffering thru this maze w/o the right Doc and/or enough "pissed of and not gonna take this anymore". Best Jon

Swiftlaw, I have been in cycle since May 8. This is my longest cycle ever (25 years ech), so I totally feel your pain and share your anxiety. I was having upwards of 6 blazing headaches a day until July 7, when, three days after busting, they went down to 2 a day. I've busted twice since then but can't quite shake this cycle-I'm still getting about one ha a day. Like you I am wondering when will this bloody cycle stop!? Throughout the day I am dealing with a lot of shadows, too, which are more anxiety producing than the one ha a day. What sucks is that I always have a few weeks of shadows after my cycle "ends" (the painful headaches go), so I feel like I could be in the cycle for another month or more as I count the shadow portion as part of the total cycle. But I just think, if I went from 6 a day down to one, this too will pass. Good luck, and good on you for taking your kid on that trip. I would be scared shitless to do that, so you have guts.

Here's a comparison I use between Headache, Migraine and Cluster.