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Taidragon
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Another Newbie
« on: Jul 5th, 2005, 3:35am » |
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Hi everyone.. yes im another Newbie
I'll start with my appologies, i say this because im a stubborn 20 yr old that has had enough with doctors telling me i have got a long term illness from one thing or another... they didnt even wait for me to be born either... anyway to fast track up abit, I started my 1st cycles about 2 years ago and i thought they were migrains. as of August last year they came back!! I had just moved just under 100miles away from my friends and family and they started up again, this was the point where i realised that i needed to register with a doctor, they put me on a little of this and a little of thast untill i finally... after 5 appointments in 3 weeks... diagnosed me with cluster headaches
I was put on one thing after another that didnt do bugger all because i had to take them periodically (2 every whatever hours) where that just makes me used to them... whatever it is... so i always have to switch my medication.
Anywho... once i was told what i had i then found this site through the powerfull wonders of our friend GOOGLE! what a blessin to find other people with what i have YAY... but when i saw the stories i thought... i aint got this... cant have... no not me.... 2 clusters later (getting stronger and stronger i thought ok maybe i have)
After a while i was given some strong over the counter stuff which i thought was great.. it ran out in a month so i went to get more but my doctor was full and i needed more so i saw another doctor and she gave me something else... another CRAP load of nothing it did for me! so again back i went to see my doctor and he gave me another med which has done me wonders!
This is why im appologising because i unfortunatly stopped looking at the website thinking i was beating it.... Sorry ppl  
Diclofenac Sodium tablets 75mg 28 tabs
he gave me these to try to see if they work and they did... i took 2 every 6 hours untill i had taken 14 of them then decided to stop, i decided to use the rest when i felt one coming on and that has dont the trick for me... all was going well... I even got a new job doing something that i love (IT Support Techniction) and then i moved again.... i moved back closer to my family and friends... i ran out of meds about 3 months ago but have not suffered from them so i thought YAY ive beat it woohoo... first i prove my doctors wrong and Beat my Epilepsy... then i Beat this... woohoo im Invinceable!!
GUESS AGAIN DUMB ASS!!!
Last night guess who popped into my head to say hello DUMB ASS... yes none otherthan out nasty friend... Mr CH!!
Guess where im off to register today and get more meds...
My Kip Scale: Varies between 6-8 three 9's and one 10
So thats me, Dumb, Stubborn and Nieave.
This time i think i will stay...
Moral of this story : If you find somthing thats good and helpfull... keep with it because someday you will really need it!
Tai
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| « Last Edit: Jul 5th, 2005, 3:43am by Taidragon » |
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AussieBrian
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Re: Another Newbie
« Reply #1 on: Jul 5th, 2005, 5:23am » |
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G'day Taidragon, and welcome to the Mad-House.
Firstly and foremostly, it's important that you really are suffering the insanity of cluster headache.
None of us here are doctors so we don't go doing diagnoses, writing prescriptions, ripping you off blatantly for products that are useless, or telling you to take two aspirins and everything will be perfect in the morning.
What we can do is perhaps steer you in certain directions and give you heaps of info and advice, along with all the support you need and want.
If it really is the CH beast that's gotcha, then you need us like we need you. And that's lots!
Otherwise, what you learn here might actually harm you while the real problem is going untreated.
There's many others here know far more than I do (30yrs practice and I'm still no good at it) and plenty of them fly the same flag as you do.
All the best,
Brian.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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Topical
New Board Old Timer
Posts: 256
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Re: Another Newbie
« Reply #2 on: Jul 5th, 2005, 5:28am » |
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Hey Taidragon,
We have a bit in common. I suffer from epilepsy, CH and have worked as an IT Tech too. Last time I worked it they wanted me on a pager 24 hour call and I got a note from my doc that stated I needed 8 hours solid sleep. (Without that I was risking getting epilepsy aura's.) If they want you to do pager work you may want to ask your doc for a similar note.
Out of curiousity what meds are you on for the epilepsy or did it go into remission? You can read more about my drug into on the newbie board.
Hope things go good for you until you get your med going. Take care.
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Taidragon
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Dragons rule
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Re: Another Newbie
« Reply #3 on: Jul 5th, 2005, 8:45am » |
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Ive been taking Epillim Tablets 400mg
I used to take 2 every 4 hours (excluding sleep time), i was having 5-6 fits of Peti-Mal every day so thats basicly 3200mg of Epillim a day
I managed to do what the doctors told me not to and i beat my epilepsy and im on my clear run for the second time and this one has lasted 1yr on and 3 yrs off meds as of april gone
Unfortunatly im one of these people that will not take medication on a regular basis I.E the 2 every 4 hours etc etc... i end up forgetting, it gets me frustrated and i just refuse to do it. thats why i decided to take my meds when i felt a CH coming on and that worked better for me because for some reason my body gets used to different meds too quickly and ends up not being right for me cos it does nothing.
im going over to the doctors in an hour to register and to see a doc about getting me some more of the same meds... and if they dare give me a bloody paracetamol i'll tell em where to shove it!!!
Thats another thing, my family can not use paracetamol because it does NOTHING. and every time something is wrong and a member of my family is in A&E (ER) or the doctors, they always say oh have this it will help even though we have said we cant take it grrrr!!!
Well were see what im given this time and i'll let u all know
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Taidragon
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Dragons rule
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Re: Another Newbie
« Reply #4 on: Jul 5th, 2005, 10:39am » |
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Well theres a plesent supprise... a nice and human doctor!!! She pescribed me the same again as she doesnt have my records yet, she was kind and HUMAN!. wow.
Same meds again so im happy im not shifting around more different meds atm
oh doc just noticed one of my pupils is slightly bigger than the other one... weird but nowt wrong apparently
well im gona go have a lay down... will be on again later.
if n e one wants me msn its hot_megadude@hotmail.com (i was 12 when i made it) but thats me :s speak laters
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cazman
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if ya dont like it take a walk
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Re: Another Newbie
« Reply #5 on: Jul 5th, 2005, 12:21pm » |
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welcome tia as much as it sucks to say that to anyone that comes here , im sorry you are going thru this and i hope you will stay and mabey find some help here as our australian friend said we are not doctors but most of us know more than the doctors when it comes to the beast .
im a none med user ive tried alot of them and no luck other that becoming real poor real fast buying useless pills , have you tried pure o2 yet if you havent see if you can get a script for that and fallow the info we have posted on this site as too how to use it correctly and what to get so you get the best from it alot of peeps here swear by it as the best aborter you can get and it works fast so ive heard , im not lucky enough to have insurance to get it but the others here will tell you the same.
another is alternative meds but seeing that you have other medical issues i would really not suggest it without heavy research into its effects one some like you as i said we are not doctors www. clusterbusters.com has that info and someone might now the answers to that there.
as i said welcome and please read everything here that you can and dont be afraid to ask question and share with others thats why this site is here .
i hope you are well and find relief soon.
ERIC T
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: Another Newbie
« Reply #6 on: Jul 5th, 2005, 1:53pm » |
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Hi there, Taidragon!
Welcome to the fab cluster family! Sorry you have ch, but I'm glad you found us. 
I'm 25, but 5 years ago I had no idea what the x ch is. Now I've been episodic and then chronic.
My advice: read a lot about treatments. Lots of folks have found relief in here from pure oxygen. I'm currently PF and I found the help from verpamil 600mg.
Find out what works for you. It might take some time, but you'll find it, believe me. DON'T GIVE UP!
And let us know how things are going, okay?
Wanna vent, wanna ask, whatever. We're here.
Welcome.
Sanna/sandie99
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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bnfreeman
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Re: Another Newbie
« Reply #7 on: Jul 8th, 2005, 10:57am » |
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Hello Tai,
Glad to meet you and sorry at the same time. I have the pupil thing going on too. One is bigger than the other. But both of my pupils are larger than the average non clusterhead. When I get hit they are full blown and I look like I am on dope. I have actully had many people ask me if I was doped up. Anyways nothing to be concerned about. I have learned so much from the people here. More than on any other site! Good luck-
Brandi
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