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finally diagnosed after 20 odd years (Read 566 times)
tyler1799
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Posts: 1
london uk
Gender: male
finally diagnosed after 20 odd years
Feb 8th, 2013 at 3:05pm
 
after suffering clusters for almost 23 years a week ago a dr diagnosed my symptoms it is such a releif to know i am not dying of a brain tumor then again it is also very scary to know i will never be free from the beast and he may get worse i am episodic and my first attack was when i was about 18 i thought i was dying went to the doctor and he gave me beta blockers telling me i had a migraine (i couldn't even tell you what a migraine was still couldn't i've only ever had clusters some times i can go years without an attack but then i can only go a few months i'm 2 weeks into an attack Cry but at least this time i have some medication that works i must ride the beast for 2 days in a week to keep my meds effective but at least i get some releif for the majority of the week  thank you go's to the doctor who after telling him my syptoms diagnosed straight away thank you thank you thank you my thoughts are with all of you haunted by the beast Wink
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Bob Johnson
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Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: finally diagnosed after 20 odd years
Reply #1 - Feb 8th, 2013 at 5:04pm
 
You should also know/contact your excellent support group:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register


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Bob Johnson
 
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Mike NZ
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Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: finally diagnosed after 20 odd years
Reply #2 - Feb 9th, 2013 at 1:47am
 
Hi Tyler and welcome

Bit confused by one thing you say:

tyler1799 wrote on Feb 8th, 2013 at 3:05pm:
i must ride the beast for 2 days in a week to keep my meds effective


I've not heard of this before. What medications do you take and in what doses?

Have you a preventive, something like verapamil, lithium or topomax, to prevent CHs happening?

And have you an abortive, like oxygen and imitrex injections to kill off a CH when you get one?

Do look at how many of us are using vitamin D3 - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

Keep reading and you'll learn a lot.
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Guiseppi
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San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: finally diagnosed after 20 odd years
Reply #3 - Feb 9th, 2013 at 10:05am
 
Welcome to the board, not much to add except repeating the advice Bob and Mike gave you. Ouch uk has a lot of great area specific advice for navigating your medical system.

The D-3 regimen Mike refers to, what many of us call "The Batch Regimen" has kept me off cycle for going on 3 years. Definitely worth your time to take a quick look see.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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