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Hello New to this need some advice please?? (Read 2748 times)
tristam98
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Hello New to this need some advice please??
Jun 17th, 2008 at 4:06pm
 
Hello there guy's my name is Tristam i am 32 and live in england. I recently have been diagnosed with cluster headaches and have jsut come out of hospital. I have been getting the pain behind my eye etc etc for about 7 weeks now every day! They start at 11am and finish about 2pm then start up when i go to bed. Until yesterday because i was only diagnosed on sunday i had only paracetamol and ibuprophen. I collected some Zomig rapimelts you place under your tongue and some 80mg of prednisalone steroids. The doc told me to hold off steroids try the zomig first  so last night i took zomig about 8pm and about 30 mins later i had chest pains in top right of chest and down my right arm. I also felt heavy in my throat and my right lower jaw was aching!!! In between hospital visit i saw doctor who prescribed me imigran injection so i took it went to sleep and woke up cross eyed!! I was convinced that that caused it they found i had a 6th cranial nerve palsy but this lasted three days i was very scared! Anyway my squint went and am back to normal now don't know what to do i am scared so scared to take triptan but they help well sort of i had to take paracetamol and ibuprophen last night as well!! can someone please please shed some light??People think it's just a normal headache!!!!
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thebbz
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Re: Hello New to this need some advice please??
Reply #1 - Jun 17th, 2008 at 4:18pm
 
Caffeine can abort if you get it at the onset. 02 is a wonderful abortive if you can get your hands on it. Energy drinks with caffeine and taurine.
Nothing normal about clusterheadaches, people are ignorant to the level of pain.
Talk to the doc about these.
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there are other treatments with no triptans
clusterbusters.com

Remain calm ,getting your self worked up only aggrivates things.
Others from England will be along with specifics in your country.
You can beat these with knowedge and a proper treatment plan.
all the best
thebb

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gizmo
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Re: Hello New to this need some advice please??
Reply #2 - Jun 17th, 2008 at 4:38pm
 
Not everyone can use triptanes...
Check with your doc, he should be able to prescribe you other abortives (O2).
In the meantime get some energy drinks and slam them down at the first sign of an attack.

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mezza
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Re: Hello New to this need some advice please??
Reply #3 - Jun 17th, 2008 at 10:56pm
 
Hey tristan- sorry for pain and troubles

definitely read the article that thebbz linked for you-  it has lots of good meds info that you can read up and educate yourself to help your doctors with a good treatment plan. It is what I printed off and took with me to the Neurologist- Helped me feel more in control of my treatment! 

OTC meds don't do much good in stopping the pain.  Sometimes doctors just don't get it and we are often prescribed meds that don't help and just prolong our pain.  So arm yourself with as much info on preventatives and abortives ( including oxygen - look left at the oxygen button and read all about its amazing effects)  to get yourself the pain free time that you deserve. Sometimes we have to educate our doc's and sometimes by educating our doc's they turn out to be super supportive

Energy drinks ( red bull etc)  a couple cups strong black coffee( as other posters suggested),  , melatonin 9-12 mg taken before bed to prevent night time hits - all that  can ease your pain.  Also don't forget about ice packs-  for your head to numb during an attack.  Some people find the water technique helpful ( see link on left)  Some folks even take a daily dose of magnesium along with other meds .  So read read read!!!

Hang in there- we're with you !

Kelly
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Bob Johnson
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Re: Hello New to this need some advice please??
Reply #4 - Jun 18th, 2008 at 11:39am
 
If I understand your msg correctly, you are or have, used zomig and imigran at the same time, or within hours of one with the other. Dangerous! You must coordinate the use of meds with the docs with ONE of them being the final decision maker.

If one of these meds is working, then you will not need any pain med. As you have discovered, OTC meds don't work with Cluster.

Please make contact with you local support group:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register. Excellent group related to the OUCH group (button, left of this page).

These links will give some basic information re. therapies:

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
================
Treatment guidelines from Europe

------
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
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(Thanks to "cluster" for link.)


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Bob Johnson
 
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kevmd
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Re: Hello New to this need some advice please??
Reply #5 - Jun 18th, 2008 at 12:39pm
 
already been mentioned but I will emphasiza the use of Oxygen.  I am not kidding.  This stuff will save you money and time spent in agony.  I was one of the morons who waited 12 years before I finally started using o2.  And Bob pointed you to OUCH UK.  Get going and good luck!
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Giovanni
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Re: Hello New to this need some advice please??
Reply #6 - Jun 18th, 2008 at 9:01pm
 
Bob Johnson wrote on Jun 18th, 2008 at 11:39am:
If I understand your msg correctly, you are or have, used zomig and imigran at the same time, or within hours of one with the other. Dangerous! You must coordinate the use of meds with the docs with ONE of them being the final decision maker.



DITTO, mixing tripans can kill you.  You must wait 24 hours or more before switching one to the other!!!  Don't ask me how I know first hand about this  Undecided

John
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coach_bill
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Re: Hello New to this need some advice please??
Reply #7 - Jun 18th, 2008 at 9:15pm
 
Like kev said OXYGEN OXYGEN AND MORE OXYGEN. I NEVER KNEW IT WAS TRUE BUT I CAN END A CLUSTER IN LESS THAN 5 MINUTES WITH OXYGEN!! And the moment i start on it the headache will not increase in kip levels. It took me awhile to finally master it, in the begining it would only work maybe 1/4 of the time, but by staying on this website and learning i can say without a doubt it is my first line of defence untill i get the clusterbusters ready. Feel better soon Coach Bill
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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