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Topic: New girl (Read 389 times) |
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cassl
New Board Newbie
I love YaBB 1G - SP1!
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I'm 21 and although I have had these for as long as I can remember untill recently all my doctors said they were migrains the worst they'd ever seen but a migrain none the less. My doctor has finally diagnosed them as cluster headaches and explained that is why the medication the doctors give me does not work. I will be going to a neurologist in hopes that he will be able to help. I have one now but the pain has become a dull throbbing behind my eye the biggest problem for me at this point is I have gone back to work but I am going numb and losing all my motor skills at random. I am afraid the boss will come in here and find me trying desperately to make my hands type while I can't explain what is happening because my mouth wont move the way I want it to. I have tried so many remedies and medications I don't even know what they all are. My doctors are constantly mad at me because I can't just rattle off a list. Well when you've been on heavy medication since you were 5 it makes it hard to know what the pills were. I am currently not taking anything and hoping this one will not have to get worse before it gets better. I can handle the numbness and the throbbing even the what I call spacing where you can't focus and wake up to find you were drooling is nothing compared to the pain when it hits. I'm so glad I found a site with other people who have them. I have found so many doctors that wont give me any medication untill they actually see me in the middle of one they look at me like a pill popper.
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Margi
CH.com Alumnus
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Re: New girl
« Reply #1 on: Jul 22nd, 2004, 12:27pm » |
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Hi Cassl - I'm sorry you're having such a rough go of it. On meds since age 5! That's no quality of life. 
What you describe isn't typical of cluster behaviour - extremity numbness I mean. That could be a side effect of meds, or an indication that something else is going on. Cluster pain is never thought to be "throbbing", either - it's described as a hot poker through the eye, it's a very brutal and horrific pain. Being able to type out a legible post such as you just did, while under a cluster attack, isn't possible for most sufferers. The pain level is just too high to be able to concentrate enough to do that.
I'm not trying to discourage you or turn you away at all - just sharing some of the experience here over the years from thousands of cluster headache sufferers. By all means - get to a neurologist a.s.a.p. to keep digging for a diagnosis. Extremity numbness can be indicative of a number of different thing - make sure you mention that to the neuro, ok?
What meds ARE you on? And can you describe your headaches for us? We're not doctors here but maybe we can point you in the right direction for a correct diagnosis.
And, finally, I see you're in Edmonton. I'm in Calgary.  We do also have a Canadian website for cluster sufferers and we have a couple of folks in your area. You're welcome to visit there as well.
http://www.clusterheadaches.ca
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floridian
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Welcome, Cassl,
Numbness has been noted as a premonitory symptom - some clusterheads (including me) get tingling in the hands or feet in the weeks before the beast appears. I have never had loss of function of my feet or hands during an attack. You may be experiencing a magnification of the extremity nerve problems in an attack, or it could be something else.
Also, many migraine medicines do work for cluster headaches. Although the 2 diseases are not the same, they do share many features in terms of the chemical disruption to the brain (serotonin, nitric oxide, CGRP, etc). You may want to check out oxygen to zap individual headaches, and melatonin/magnesium/B vitamins to prevent.
Drooling? Been there, done that. Hard to pay attention to little things like the dainty use of a handkerchief when pain gets above 7 on the Kip scale. Hope you find pain free days and nights.
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| « Last Edit: Jul 22nd, 2004, 1:13pm by floridian » |
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Superpain
New Board Hall of Famer
GOT O2!?
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Posts: 1351
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Re: New girl
« Reply #3 on: Jul 22nd, 2004, 6:43pm » |
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Everyone know's Girls don't get cluster's... 
Just kidding.
Welcome.
Read up! Somewhere around here is the info you need to be pain free!
Get O2!
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Chris
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ExPat_jac
New Board Junior
air so thick it is it's own food group!!!
 
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Re: New girl
« Reply #4 on: Jul 28th, 2004, 5:23am » |
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>> they look at me like a pill popper
hahaha try walking into a doctor's office with a beard, longish hair (male of course) giving him your background and see how long before that line comes up!!!
I fight to have that taken off my medical records almost everytime I see a new doctor....
sorry you have been having such a time cassl...but gezzz...you're a gil...girls don't get CH (just kidding)
One thing I have learned since reading this board (and suffering with CH's since age around 7, is that there are a LOT of individualality when dealing with CH...
Me...I have found myself miles from where I last remember being, at times wondering in a field, just because the pain was so bad the only way I can figure it is that I "black out" for a bit...generally this tends to be when I'm in a VERY hot enviroment (like Florida...Boca Raton was the last time this happened to me...I started out to go to the store, and next thing I know I'm in a field miles from town with NO freakin idea how I got there, feeling like shit....fun fun fun...but scary as hell if you think about it. I try not to too much.)
Meds since 5? Wow, got me by two years
Hell, I think at sometime or the other I've taken most things known to man
I'm one step away from a Kalimantan (Borneo for y'all not lucky enough to be living in this god forsaken thrid world paradise!  ) witch dotor!
Hang in there....read around the site, if you are like me you'll learn some good information....
Don't give up....wipe the drool from your chin (hell, at times I've ben known to drool a river ) and keep going.
Here's wishing you pain free days (and nights!)
jac
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MieeRue
New Board Newbie
*insert nonsense here*
 
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Re: New girl
« Reply #5 on: Jul 29th, 2004, 3:25am » |
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Hey Cass. I might be new to posting here but im a lurker lol. Im so sorry to hear of your pain. I havs the numbness aswell although maybr not to the extent you describe and isn't drooling fun the pill popper thing rings true for me to ive had to take countless drugtests at new doc offices because they think i want the meds...but im always clean so they cant complain. Ive been at there since age 11 and in 26 and preggers as well as starting a cycle now..
When you have this spacing is it after the pain has eased and its almost like you pass out or go to sleep only to wake or come to in 1 to 15 min. if thats it i have done this when im so exausted from no good sleep. Oxygen is one of the things the really works great sor me its just a matter of getting it.
Glad to have you here im always a bit saddened to see a new face but i know how much this site has ment to me....(even if im not always talking)
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judyw
CH.com Alumnus
New Board Veteran
Knowledge is Power
  
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Re: New girl
« Reply #6 on: Jul 29th, 2004, 5:22pm » |
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Welcome Cassl, so sorry you are here...I, too, started this "fun" at the early age of 5/6...not finally diagnosed until my forties, prefer not to remember the meds or diagnosis thru the years...well, I like the one about not wanting to work... when finally dx I had numbness from forehead to chin on the right side of my face...cannot blame numbness of extremities due to so many injuries thru the years home nursing...the drooling nose and mouth became common and embarrassing, but what's a girl to do...since then, it comes and goes, along with ear pain...so, good luck with getting the right meds for you, and do not be surprised at anything that happens...CH likes surprises and keeping us on our toes...143
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judyw143
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