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Topic: New User Looking for email exchange (Read 562 times) |
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marcatcap
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New User Looking for email exchange
« on: Jan 7th, 2003, 5:26pm » |
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Although I am new to this group, I have been with you in spirit for 20 years. For the first 15 there was NO medication that would work for me and how I suffered (not very silently, I might add). Oh, there were short fixes, egots and lithium and a slew of others, but nothing lasted and nothing worked for long. Then along came imitrex injections. Both a blessing and a curse, I think. YES, they almost instantly get rid of the damn thing but. . . a little history here.
15 years, cycles were for 2 months a year with 2 headaches a day regular as clockwork, each lasting 2 hours. Now the cycle is lasting 4 month with episodes sometimes as often as every 3 1/2 to 4 hours. The last two years I admit that I have been taking more than prescribed 2 doses a day. I have been taking them almost every time the pain comes. The doctors are worried, I am worried, but my rationalization is this . . if the options are (a) no problem with extra doses, (b) possible death, (c) rebound headaches . . . then I'm alright with (a) and (b), but what's behind door number 3 is starting to become troublesome. I really think that the length of cycle and frequency of episodes are increasing because of the imitrex. Any thoughts?
Anyway, enough of my whining and moaning. I know I'm not God's chosen whipping boy, but I sure would like to talk to or meet some others out there who understand, because as of now, there is no one. I don't even think my doctor really understands because once I came into his office, screaming and throwing myself onto the floor because I had run out of medication (I was returning from vacation) and was in agony. This is what he told me: "Don't you ever cause a scene like that in my office again, or you can find another doctor." (P.S. - he died last year, but I'm still having clusters.)
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domm
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Re: New User Looking for email exchange
« Reply #1 on: Jan 7th, 2003, 5:33pm » |
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marcatcap - welcome to clusterville. You don't need email exchange, put it right up here. That's why DJ created this place. Rant, rave, find understanding, answers to your questions, and even true LOVE (ask Den and Georgia). Its all right here.
Pull up a chair and make yourself at home. (course, ya gotta do the dishes later....  )
domm
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BobG
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Re: New User Looking for email exchange
« Reply #2 on: Jan 7th, 2003, 9:42pm » |
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You wrote "(P.S. - he died last year, "
I say "Good for him! Now he's out of our misery"
We don't need doctors like him.
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Linda_Howell
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Re: New User Looking for email exchange
« Reply #3 on: Jan 7th, 2003, 10:41pm » |
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Yes!!!!!! What BobG said..
Also Domm is right. That is what this place you've just found is for. If you read some of the other posts, you'll see that this is what you're looking for.
You didn't mention Oxygen as an abortive. Have you tried that? No side-effects and it works for the majority of sufferers.
Pull up a chair, and read all the info here. Linda Howell
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cootie
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Re: New User Looking for email exchange
« Reply #4 on: Jan 7th, 2003, 10:53pm » |
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marcatcap....hi ! Brad was takein as many as 3 ta 4 imitrex a day this past episode.....seems when the attacks were longer (1 ta 2 hours) years ago he only had two a day.....this past time they were shorter but had several more a day 'n more shadows. Pam
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JDH
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Re: New User Looking for email exchange
« Reply #5 on: Jan 8th, 2003, 12:01am » |
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Marcatcap,
I was also getting concerned about the amount of Imitrex injections and inhalers that I was using in this current cycle (sometimes 2 and 3 a day and that can't be too good for you but whaddayagonnado). I expressed that to my Dr. and he set me up with oxygen to use as an abortive.
It has been a little over a week since they delivered the o2 and I haven't had to use the Imitrex since (I've had the auto injector in my hand ready to go but didn't feel the need after about 5 mins of o2).
It has worked when I feel the ha coming on in the early evening and it has worked for those late night wake up calls that are always so "special."
If you're concerned about the amount of Imitrex you're using then maybe the oxygen would be worth trying...certainly a lot cleaner.
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firebrix
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Re: New User Looking for email exchange
« Reply #6 on: Jan 8th, 2003, 1:40am » |
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Welcome marcatcap!
Sorry to see that you are here, but glad you found the site! You'll find heaps of great people here and you can say pretty much whatever you like, but be prepared for some interesting reactions however!
I think you might have a point with the Imitrex. Mopar is finding the same results as you. He has taken a holiday from using Imitrex by using a short, sharp burst of prednisone. He hopes that the Imitrex works better after a break.
I hope your new doctor is more compassionate than the last one!
Wishing you PFDAN
firebrix
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"All that it takes for the triumph of evil is for good men to do nothing."
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marcatcap
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Re: New User Looking for email exchange
« Reply #7 on: Jan 8th, 2003, 4:20pm » |
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Thanks, all of you. I think I'm finally in the right place (although the mechanics of chat rooms and message boards baffle me a little. Be patient until I figure all this out.) So. .. as the old joke goes. . If you can't say something good about somebody, don't say anything. He's dead. . . Good!" (that's about the doctor).
I'm not sure if 02 works or not. Here's the story. It's a "you had to be there" to really appreciate it. It's sort of a visual thing. The doctor prescribed the 02, the tank (on wheels) was delivered at work, downtown San Francisco in the busy financial district. I was supposed to be picked up by a friend since I had this big 'ol tank with me. I was out on the corner (very busy after work) and saw my friend drive by. He did not see me, so I started running down the street screaming at his truck dragging this oxigen tank behind me. I got lot's of stares and people were pointing and laughing. At least in my mind they were pointing and laughing. So, as a result. I really don't remember if I even tried the 02 or if it worked or not. I only remember runnning down the street. I can laugh NOW.
SO. . . Looking at some of the stuff on the website I am confused. What else is new. It seems that stress can be a trigger. It seems that relaxation can be a trigger. And so it goes. . a little like the Bible. A lot of opposites are true. This is what I've always told the (now dead) doctor. I'm sort of a creature of habit so things don't really change for me. The months of freedom from the monster are really the same as during the attacks as far as what I eat or drink or stress or don't stress about. Are there REALLY triggers?
Thanks again, all. I think I'm here to stay.
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marcatcap
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Re: New User Looking for email exchange
« Reply #8 on: Jan 8th, 2003, 4:32pm » |
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OK. I think I messed up here. I was trying to reply to the wonderful comments I received on my original message and I think I started a new thread? Did I do bad? Sorry.
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suzy617
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Re: New User Looking for email exchange
« Reply #9 on: Jan 8th, 2003, 5:36pm » |
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Welcome Marcatcap to the board. Dont worry about starting a new thread. If the message board police have not come to your house to hunt you down by now, then I think you are safe.
Glad you found us,
suzy
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marcatcap
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Re: New User Looking for email exchange
« Reply #10 on: Jan 8th, 2003, 5:51pm » |
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Thanks, Suzy. It's nice to know ONE good thing is working out. I guess when your up to your ass in allegators, it's hard to remember that your main objective was to drain the swamp!
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domm
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Re: New User Looking for email exchange
« Reply #11 on: Jan 8th, 2003, 6:12pm » |
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BTW marcat - if you do want to send an email to someone, click on their name, and if their email is listed, you can click on that and a message template will pop up.
You found the right place.
O2 works wonders for many of us. And they do have little bottles that come in a case and shoulder strap. Look into, just be sure to use it right. Read up
domm
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Ueli
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Re: New User Looking for email exchange
« Reply #12 on: Jan 8th, 2003, 7:22pm » |
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BTW domm and marcat - if you do want to send an email to someone there is even an easier way. If someone does disclose his email addy there is a small icon on the left. It looks like a piece of cake but probably symbolizes an enveloppe. Just click on and your mail program should open, with the addy inserted. ;D
PFNADs
Ueli
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Edna
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Re: New User Looking for email exchange
« Reply #13 on: Jan 9th, 2003, 10:23am » |
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Well lordy be guys, did we ALL miss that....
"if the options are (a) no problem with extra doses, (b) possible death, .......then I'm alright with (a) and (b), "
PLEASE marcatcap.........possible death should NOT be in ANY WAY "alright"
Hoping that finding us here will continue to help you enough that you DO change your mind on that
Since your butt of a doc is dead, please tell us that you DO have another lined up????
keep us posted, we care.......domm is right though, ppl here LOVE food ( it ALWAYS comes up in our chat session) so there has to be lots of dishes so watch out for that..... 
AND SECONDLY........we LOVE pictures here, so for your initiation you have to post one of you running with that O2 tank..........what you think jonny??? LMAO that WOULD be funny
wishing you the best,
EDNA
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catlind
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Re: New User Looking for email exchange
« Reply #14 on: Jan 9th, 2003, 10:52am » |
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Marcat,
Welcome aboard. Sorry you had to find us, but you are no longer alone. Ever person here (mostly) understands completely what you experience. O2 and a NON rebreather mask at between 8-12lpm is what I refer to as the nectar of the Gods. It's been literally a life saver for me as I can't use the triptans because my ticker doesn't like em.
As for your (c), what I've found when I end up in rebound headache cycles, is that (and this was recommended to me by a neurologist) is to take two aleve (generic brand works great - naproxen sodium) every morning and every night. I'm not a doctor, and you should check with one before you do what I suggested as it is over the recommended and allowed dosage. It worked wonders to break the cycle of rebounds though, and when I start a cycle, I start off taking an aleve every morning and night to be sure I'm not having headaches of other types (although it's not hard to distinguish!).
I hope you find a decent doc, and then get yourself to a neurologist that is knowledgeable in CH's. There's a list on the OUCH site of doctors that are good. I suggest you look there for one and see if you can't get in to see them.
Cat
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SFChris
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Re: New User Looking for email exchange
« Reply #15 on: Jan 9th, 2003, 11:19am » |
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Marcatcap,
Welcome - great people and info on this site!
I also live in SF (work in Silicon Valley). Feel free to send me an e-mail. It's great to actually meet another sufferer.
Best of luck.
Chris
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Lenny
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Re: New User Looking for email exchange
« Reply #16 on: Jan 9th, 2003, 11:27am » |
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Marc,
If you are concerned regarding the amount of imitrex,you can get the individual viales( excuse my spelling) 6 mg.with diabetic syringe's( 1/2 cc - 5/16"gauge) with this all you have to do is take 2 mg.each time( 3- shots to a viale )works just aswell as the 6 mg. I depend on imitrex as an abortive( i am chronic ),as i am one of the unlucky one's that gets no releif with oxygen  > I have also used the imitrex on several occasions 6 or 7 time's with no ill side effects( these were full 6mg. ) prior to learning the 2-mg. trick on this site ). If you have the auto enj., you can use a "q" tip or a skinny stick,by marking it and maually giving yourself the 2 mg. If you had not tried the o2,do yourself a favor and try it,it seems to work for most of us ( alot safer and cheaper ;D ). Good Luck and hopefully many PFDAN coming your way.
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yes a newbie,unfortunately not to the beast!!!Chronic - Clusterhead
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marcatcap
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Re: New User Looking for email exchange
« Reply #17 on: Jan 9th, 2003, 1:58pm » |
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Thanks, all. So, maybe option (b) is really not an option; but, it sures feels like one sometimes. I swear, when I'm up to my neck in it, all I can think is "Don't make waves".
Yes, I have another doctor (whom I have not seen as yet). He happens to be the dead doc's ;D partner in practice. Is this not a good idea? You bet, but I have to see him once before I change (something about the HealthNet Insurance policy). So, really, I don't have the option of necessarily seeing the best Neuro, just the best on my plan. When I tell people about my "head" doctor, they just laugh. If y'all knew me intimately, you'd laugh too. I'm not alway walking around with my head entirely screwed on tightly, if you know what I mean.
So, I'll try the 02 once more and let y'all know. (I'm not from the South, but "Y'all" seems entirely appropriate.
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cootie
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Re: New User Looking for email exchange
« Reply #18 on: Jan 9th, 2003, 2:37pm » |
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marcatcap.......hey if ya come visit here in da east jus think....you could jus tell everone ya left her head in San Fransico if they think yer bit 'off'.....oh sheeeit......that's left my heart in Sanfransico isn't it.....neeeeever mind.....Pam
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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