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Title: New guy, old story Post by Loric on Feb 14th, 2008, 6:10am Hello there. I figured since i'm up this late, or early if you're on the east coast, i'd take some time to type out an introduction. Maybe some folks will commiserate. I'm 25, and love long walks on the beach - not really. I live in Florida and hate the beach. The water is dirty and scary animals in the water. That's really not the point though. I wandered into this forum after scouring the net for information about Cluster Headaches. I was checking to see if any amazing new advances had happened in a year. A year? Why would I have a left the wonderful and exciting world of cluster headaches for a year without checking in? Because I went from being chronic from the age of 16 though 23-24ish to being headache free until roughly January 4th. It was fun while it lasted. I was that kid in high school that always had a pill bag and people thought they could buy drugs from. In college that transitioned to my professors thinking I had a drug problem and was skipping class to shoot up in the bathroom with my Immitrex Statdose - cuz that stuff will get you crazy high! At first I was just sickly and sent home often. I often missed 45 or 47 days of a school year, but I was a good enough student that I was allowed to pass. My freshman year of high school they did threaten to expel me though, so my teachers Sophmore through Senior year let me just lay in the courtyard on a bench staring at the sky when i had my headaches, sort of drugged up on my cocktail of Excedrin migraine, benedryl, and sudafed. I started taking Imitrex tablets after being formally diagnosed with "migraines" sometime in my Senior year of high school. Stayed on those for a long time. Took 45mins for things to get better, took probably once a day if not every other day, but life was manageable. Took a few years off school, worked, eventually went back to college. When I did, I had a really bad winter/spring about 2 or 3 years ago. That's when i went on the Imitrex injectables. The headaches were worse then ever before, to the point of me passing out from the pain. Like getting dizzy, sickly nauseated by it, then then out like a light. All through this my doctor was in and out of her office doin who-knows-what and i had the evil-nurse-practitioner who thought i needed Zomig tablets. That woman actually made me take a neurological test! I guess I did kind of go off on her... But still.. she had my chart.. Goes to show, people who don't understand and don't get it wont prescribe the right meds. I went on a breif periods of corticosteroids, which helped for like 4 days, but then everything was back, I went on topamax which was interesting.. the dose was hard to figure out. I was loopy. I was seeing thing on the high dose and the nurse-practitioner-of-doom put it way too high after i yelled at her as a knee-jerk reaction (and i didn't think to protest) and that made me really loopy. I mean i was telling people that my walls had texture and I -SEE- it moving to the music. Insurance fought with me over the Imitrex injectable. They were not having it. They wanted to limit the number I could have. So, in a panic since my doc was out of town I went to a walk in clinic, and this other doc got me on the umm.. valprox i think? The stuff that's really heart medicine. Lowers your blood pressure. Whoo, that stuff makes you whoozy. Eventually it all got sorted out, but was really miserable. I was going through two whole Statdose kits a day. At one point I paid $1000 out of pocket at walgreens for imitrex and the lady at the counter was like "are you going to die? we'll start a collection" After about 3-4 weeks i got the topamax right in my system and the headaches controlled - yay! And, shortly thereafter, i managed to get it down to no headaches. None. For a year or so. I actually lost count of when it stopped. I just always had meds with me as force of habit. Good thing apparently. But, i'm back now, used a few statdoses (well, quite a few over the last few weeks) but i've also worked my way back up on topamax and i seem so be doing pretty well. I think it's been about a week since i've had a headache. I'll probable wait about a month or so, and if i'm headache free I'll try to to taper off.. Wish me luck. -Loric |
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Title: Re: New guy, old story Post by Ray on Feb 14th, 2008, 8:39am Dear Loric: I'm sorry that you've had a rough time of it. Nearly all of us can relate to some or all of your story. I am glad that you've found us because there is a lot of good information here. If I don't say the following, someone else will, so here goes: High flow Oxygen at 15 liters per minute, with a non-rebreather mask (the kind with a bag) has been a God-send for many of us. For me, it will abort most cluster headaches in 5-7 minutes. Your milage may vary. Many of us keep energy drinks, like Red Bull, around and slam one down at the first sign of a headache. It would seem that the combination of 1000 mg of taurene and a healthy shot of caffeine works wonders to head off a headache at the start. I wish you great success to head off your cluster and please stay around, learn, share, vent, whatever and we'll be here. Wishing you well, Ray |
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Title: Re: New guy, old story Post by Guiseppi on Feb 14th, 2008, 10:34am Like Ray said, you'll hear this a lot!!!! Oxygen should definitley be given a try. I use it as my primary abortive and can usually be pain free in less then 10 minutes. There is a link on the left you will want to read up on, "Oxygen Info", print out the info and take it to your doctor. Oxygen is cheap, and with the exception of a little fire danger, has like no side effects. You can stop a headache, and be back to work in 10 minutes. Glad you found us, sounds like you've had a tough run. Hoping the topomax keeps him off your back for a while! Guiseppi |
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Title: Re: New guy, old story Post by Loric on Feb 16th, 2008, 4:37pm So far, so good. Side note - is a slight nosebleed a side effect of a high dose of topomax? Or the high blood pressure perhaps caused by it? I dunno, i either have a sinus infection that's concurrent with my topomax usage and causing a small but constant nosebleed or the topomax is causing it. Another day or two and i'm going back to the doctor *sigh* About the oxygen - really? I had it prescribed once and even had the people calling to deliver it, but i was flying out out to California and kept imagining myself hooked up to it like someone's grandma on the plane and thus never ended up going through with it. I said to myself, "for god's sake it's oxygen, it's in the air, what could it possibly do?" Shows what i know. But wth the oxygen - what do you do about travel and work and stuff? I actually work as a travel writer part time (I quite literally get paid to goto Disney World and Disneyland and hop across the country and stay in hotels when i'm not in my college classes) and my college career is in theater design - so not a desk job.. How does oxygen work for portability and such? Does it come in like a little can? Oxygen quick shots? |
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Title: Re: New guy, old story Post by GrandPotentate on Feb 17th, 2008, 5:47pm Yeah, Oxygen really works incredibly well for most of us. Like many others, I had also been un/misdiagnosed and prescribed all sorts of ineffective dope. I heard a bit about oxygen, but it sounded like a lot of fuss. But another doc said give it a try, and I found it worked amazingly well for me. Read up. The little hose that sticks in your nose won't work. You need a non-rebreather mask, and you need it to fill the bag as quickly as you breathe it out (around 15 lpm works for me). Other than that, get to it as soon at the hit begins. Although there are some issues with long-term exposure to high oxygen, the side effects of these brief periods is pretty minimal. Since I am episodic, I usually simply don't travel for a couple months - the tank and stuff is ready to go at home. But if you read up, you'll find some portable solutions as well. Discuss it with your doc, and let us know how this works out. |
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