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Topic: head smashers unite! - hello all (Read 338 times) |
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cipher_cat
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head smashers unite! - hello all
« on: Apr 2nd, 2004, 1:21pm » |
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hi all,
all i can say is wow... this site is amazing! it's so comforting to hear all your stories, ideas and solutions. it looks like i have a lot of good reading here to start working with. thanks so much for your imput!!!
my name's Janet and i'm 26 years old, i think... it's difficult to say. clusters have a tendancy to transform me into someone who acts and feels in their mid 90's. i get cranky around 5pm, i take more pills than Courtney Love and my short-term memory randomly ceases to function. yet comparitively speaking, i do look great with an OČ tank.... 
my clusters began in November of 2003 so all this is relatively new but it's getting old quick! 5-12 clusters a day and not one remission since they began will do that to ya i guess. =/ [you've all been there] it feels like i'm chronic but time is a little blurry and drawn out. does everyday for a few months classify chronic or does it have to be years? ugh.. i don't want to find out do i?
Indocin, Prednisone, Verapamil, Frova, Topamax, Vicodin, OČ... i'm presently on the last five meds mentioned and for the past 2 months and they're not effectively working (yet?) but i've been taking them in stride if for no other reason than to prevent the feelings of helplessness my husband goes through and the teary panic in my five year old daughters eyes. have advice? rebuke? sympathy? lay it on me!
fellow head-smasher,
cipher_cat
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Superpain
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Re: head smashers unite! - hello all
« Reply #1 on: Apr 2nd, 2004, 2:19pm » |
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 Welcome!
Chronic is technically 1 yr without 2 weeks remission...
Sounds like you have a pretty good cycle going at the very least. Don't worry though, I've been doing this for 18 yrs and my shortest cycle ever was 4 or 5 months. I'm over a yr right now, but I'm still pretty sure I'm eposodic, at least for the time being.
I would suggest dropping the vicodin... It causes rebound headaches for some of us, and generally makes things worse. And you can't really say it helps much can you?
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Chris
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cipher_cat
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Re: head smashers unite! - hello all
« Reply #2 on: Apr 2nd, 2004, 4:30pm » |
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ew... nooooooo...... *cough nooooooo.......
wait, tell me we're talking dog years or something. i'm not worried. it's just a fluke. what's today again? now i get how you got the title "New Board Old Timer". 18yrs of this?!?
i must admit the whole idea of having 2 weeks of no clusters sounds really really amazing though. if that's really possible sign me up. i'd kill for just a night. or how about just a nap and a side of appetite? heh.
you're right about vicodin. i haven't honestly been taking it because it's about as helpful as a teenager at taco bells drive-thru at 2min. to close on a Saturday night. i had no idea it caused rebounds though. thanks for the heads up on that one! it was actually prescribed to me by my family doctor while on indocin. my neuro didn't argue that i have some on hand in case i need it to sleep or something? i dunno. it's hard to pay attention to a guy who stores plastic brains in his office and pricks toes for a profession. =p
so Superpain, what works for you? since you've had a chance to try things out for a bit is there anything you want to suggest i try besides a little more time and the Verapamil / Topamax cocktail?
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Superpain
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Re: head smashers unite! - hello all
« Reply #3 on: Apr 2nd, 2004, 4:55pm » |
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I'm just an old tmer cuz I post alot... I just found this board 2 weeks ago... Just went to the neuro 1 week ago (less)...
Till then I had been completely unmedicated, and never ever heard of anyone else with ch. Pain incorporated...
I'm on a prednisone taper that is helping, started verapimil... Got imitrex, O2, and I'm taking lots of vitamins, magnesium and some melatonin at night.
At least you've got a good sense of humor!
You're just about as funny as I am!
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Chris
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FZfan
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Re: head smashers unite! - hello all
« Reply #4 on: Apr 2nd, 2004, 5:31pm » |
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Sorry SP, I think she's funnier. 
Welcome cipher_cat. Read up and ask questions. Use the search function. Definitely check out the info to your left.
Sounds like you're having a helluva time. Are you getting any relief at all from the o2? Like Superpain, I only discovered this site a week of two before he did. I've had 'em since 1995, but mine didn't start until I turned 40. I had been using o2 for years with just mild relief. Then when I found this site, I discovered I had been using o2 at the wrong flow rate and I had been using the wrong mask. When I got the right equipment, I was suddenly able to completely abort most of my attacks. What a wonderful thing that was! It's certainly not a cure, but oh, what a relief it is.
Don't hesitate to question your docs and, if necessary, seek out better ones after you read up on everything available here and at the OUCH site. You might find after reading up that you know as much about these as your docs do. That doesn't mean you don't need a doc, because someone has to monitor you at the very least, but it does mean you can more actively participate in your treatment.
Above all, try not to worry. Even if you discover you are chronic, you will find lot of folks here who are also, and have been for much longer than you. The medicine and the knowledge is getting better every day.
CH is a horrible, horrible affliction, but like any affliction, it can be lived with. And lived with well.
Now get out there and start kicking the beast's ass!
Glen
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There is no such thing as a dirty word. Nor is there a word so powerful, that it's going to send the listener to the lake of fire upon hearing it. - FZ
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cipher_cat
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Re: head smashers unite! - hello all
« Reply #5 on: Apr 2nd, 2004, 7:41pm » |
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thanks guys for the awesome welcome! =)
OH! see i thought the o2 was for my husband! doh! i get it now.
actually, the guy that hooked me up at the oxygen place suffered from really bad migraines and judging from his laid back attitude and obsessive use of the word "dude" i'd say he was very well hooked up indeed. anyway, he knew exactly what i needed which was perfect as i was fairly clueless. (i said FAIRLY clueless) for me the o2 takes the shadow off a bit. on bad nights i only get about 30min to an hour between attacks so the o2 gets a good workout.
i'm presently on 125mg of Topamax which is probably considered lightweight for you guys but considering my whopping 120lb frame it's a whole lot of tingling-limb, memory-loss medication. i up dose weekly to a max of 225mg a night. considering though that i'm loosing weight really really fast, that's not going up too much further. how can i keep my place on the sumo wrestlers league if i keep this crap up for too long?
here's the sign of a great neuro guys. i had an attack right before my appointment and missed it by 20min. i arrived late and since my neuro is one of the top in the area they had already rescheduled me for the end of the month. 19 days away! so there i was standing in the lobby in tears with my daughter, mid-late attack, without oxygen, begging to be let in earlier. the nurse was bitchy that i even asked to be seen, something about the paperwork. i started lapsing into a second attack and leave the bitchy nurse mid sentence. somewhere during that time my neuro hears what's going on and rushes out into the lobby to rescue me, yelling to the nurses at the desk to screw the paperwork he's helping me. judging from the total shock on the faces of the nurses and 30+ people in the lobby i'd say that doesn't happen often but AMEN! hurray for the quiet girl getting a leg up. now i'm all taken care of.
ya know, i'm pretty tired right now FZfan. instead of waisting all that energy kicking the beasts ass, how about i just sort of send the beast this mean little looking emoticon that says "i'm mad! mad i say!"  then maybe if i feel like it tomorrow i'll flip it the finger.
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| « Last Edit: Apr 2nd, 2004, 7:44pm by cipher_cat » |
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joesf
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Re: head smashers unite! - hello all
« Reply #6 on: Apr 2nd, 2004, 7:57pm » |
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The first time i got anything that felt like a cluster i was 15, I am now 55. By twenty i know i was getting them for sure, but i called them sinus headches. I used to take sine -off for them. It worked on some and did nothing as the cycle went on. Most years i was treated for sinuses with stuff for pain by doctors. By the time i was 40 they gave me some stuff that was a real good HA pain killer. It worked on the ones leading in, but when the bad ones got ready to happen they came anyway. Since then i have taken nothing for HAs. Mine came about every year or so at first, sometimes two seasons one year, lasted a month and went away for a year or two. I had them 5 years ago last and have them again now. I just started trying O2 this time. I havent got the real bad one this time. So maybe the O2, which hasnt been able to stop all of them, keeps them from getting to max intensity.
I stopped using the O2 anyway to see what happens.
I had one HA suddenly release during a physical therapy session this week, while my leg was being stretched. you might want to consider trying acupuncture or even yoga.
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Charlie
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Re: head smashers unite! - hello all
« Reply #7 on: Apr 2nd, 2004, 7:59pm » |
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Welcome to the fold and I'm sorry you have to deal with this horror. You have a great sense of humor about it and it can't hoit. A great neurologist story by the way. I've known a few in my day and they can be an odd bunch. Nice going there.
I no longer need CH drugs. It's been 13 years since I was hit......I'm 57 and had my first at 23. I'm not sure why mine ended. If the age factor is valid, 45 seems too young to me. Anyway, here is a link to my little technique and I hope you have some success with it. As I've said: At worst, it's harmless:
http://www.netsync.net/~charlies/
Good luck and keep on posting.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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cipher_cat
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Re: head smashers unite! - hello all
« Reply #8 on: Apr 3rd, 2004, 11:08am » |
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thanks for the suggestions guys. i love this site! look at ya'll posting with advice. *blushes..
acupuncture and the misdirection of pain makes me a little nervous though. when i first started getting these headaches i once grabbed down on my legs to distract myself from the pain in my head. i woke up the next morning only to find that i had bruised the muscle and torn the skin on my thighs right through my levi's from gribbing down so hard. now, i take it out on those spikey little stress balls you buy at the pharmacy. they're soo squishy fun and can take a hell of a lot more beating then my legs or head.
i'm very into yoga, that was a good call. yet it only works to a certain extent. i can't cure myself of this thing with my mind (i'm no vulcan). however, i can give myself a certain amount of peace and prevent my blood pressure rising and making things worse. plus, it's free because i get DVD's from the library so in that sense, spread the news it works! simple breathing, yoga, and books like "Being Peace" by Thich Nhat Hanh and "A Spoonful of Ginger" by Nina Simonds made this hopeless case into a very content and pleasant one to be around despite the beast. (check out those books if you get a chance)
i LOVE that link you have for colleagues Charlie! especially the part about what NOT to say! my husband mailed out a similar link in bulk to everyone we know. i had no idea he sent it until within the hour i was getting emails of appology from friends saying how sorry they were that they were ever angry i used headaches as a reason not to show up for social events ect. LOl... i'll never have to hear those madening phrases about migranes again!
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joesf
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Re: head smashers unite! - hello all
« Reply #9 on: Apr 3rd, 2004, 5:13pm » |
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Hey Cat,
I had a real bad one last night so I fiugred lets see if i can get it to stop with a stretch like at the PTs. I couldnt make it go away, but the pain was lower during the srtetch of my HA side leg and would go up when I stopped.
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Renee
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May we all find some pf time! Is it summer yet?
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Re: head smashers unite! - hello all
« Reply #10 on: Apr 3rd, 2004, 8:14pm » |
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Cat,
Welcome to your new CH family!
Are you using a non-rebreather mask with your o2?
Feel free to lurk around, ask questions, and read read read read!!!!
fyi....I had to go off the topamax. I weigh 118 lbs and I pretty much forgot who I was and everything else!
i'm chronic and have been since 1997 although the CH started in 1982.
good luck and welcome to the family
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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cipher_cat
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Re: head smashers unite! - hello all
« Reply #11 on: Apr 4th, 2004, 8:11am » |
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joesf -
sucks you had a bad one but it rocks stretching helped! i can't begin to tell you how excited i was for you just reading that! personally i'm still in the phase where creative verbal abuse and stress ball torture gets me through it. the stretching and yoga are mostly for in-between time relaxation and stress relief. i still require a lot more work with tolerating pain to the point where i can sit still long enough to stretch but i'll get there eventually.
Renee- thanks!
chronic, ugh... i'm so sorry. can't begin to imagine. you guys have been so great here and yes i have been using a non-rebreather mask and an o2 tank that's unfortunately never had the chance to go below a 15 LPM flow. even then it takes a while. i don't believe the topamax is working for me either but i'm trying to be patient as steroids made me near suicidal and anti inflammatories were as helpful as growing hair on my chest. the topamax dumb factor is a definite drawback. not that i was anything close to brilliant to start out with but when i'm unable to sit down and follow the blues clues TV show with my five year old, i know something's definitely wrong. well, that and she also out eats me every meal and my husband mistakes her laundry for mine. my present weight loss on topamax over two months is 14 lbs. which is great unless you start out weighing 128. then it's just plain wrong. so help me out here. what is your alternative?
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