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   Author  Topic: How often will this happen once my period is open  (Read 412 times)
djwspain
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How often will this happen once my period is open
« on: Oct 27th, 2005, 5:53am »
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Hell family I am new to the site in which I was directed to the site by my dr seeming as though I was just diagnosed with ch's.  I had been back and forth to the dr's for two weeks being treated for a chronic sinus infection and none of the antibiotics or pain meds worked.  Finally I was sent two get an mri and then to an neurologist who in ten minutes determined that what I was experiencing was ch.  Do they ever go away or are they here for life?  I am in my fifth week and the past two days have showed signs of the ch's easing up I go for my second visit with the neurologist today and he is suppose to decide if he will have to place me on some sort of shot and what other preventive methods we are going to take.  I have been off work for three weeks and plan on returning Monday has anyone else missed any work due to these episodes.  I am just trying to get a glimpse of what I am about to be hit with.  I have been using oxygen and it has been the only thing that has eased the pain at all.
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Beastfodder
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Re: How often will this happen once my period is o
« Reply #1 on: Oct 27th, 2005, 6:12am »
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Well DJW - sounds so familiar to my diagnosis.
 
At five weeks in it's about the time a cluster will start to go away - unless you're chronic and they don't stop.
 
The good thing is that you're diagnosed, talking to people and will get the right help.  O2 at the right levels already helps you and that's a start.
 
Doctors wil look at two kinds of medicine - to break the cycle itself and stop individual headaches.  It's a case of working out which approach to use and works best for you.  If it's shots it'll be an injection to take to stop headaches when they hit you because you need the medicine in the system quickly.
 
With breaking the cycle this time at 5 weeks in most drugs take a while to build up befoire they're effective - so it may well end without knowing which meds do work.
 
There's a lot a research going on too that you could be a part of - more data on the subject the better we'll be able to understand the nature of this.  
 
Read lots - listen to the advice - don't be afraid to ask for help and you'll be fine.  There's some research forms at www.clusterbusters.com which also covers alternative therapies for CH.  
 
For now see what the doctors come up with and good luck
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E-Double
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Re: How often will this happen once my period is o
« Reply #2 on: Oct 27th, 2005, 7:09am »
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Hiya,
 
Welcome to the nut house.
Unfortunatley, once a clusterhead always a clusterhead.
It is however up to your screwed up hypothalmus how often they will occur and long your cycles will be.
Some go weeks, months and some go years.
 
The trick is not to worry about it and to come to grips as soon as possible!!!! You are in the right place and the fact that your doctor told you to come here is fabulous!!!!!
 
Besides using oxygen as an abortive therapy what meds are you on if any? are you on a preventative therapy??
 
Good luck, stick around and read as much as you can!!
 
Eric
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Re: How often will this happen once my period is o
« Reply #3 on: Oct 27th, 2005, 7:48am »
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All I can say is "Wow!"  
 
Sorry you're suffering but to be just five weeks into your first ever episode, get treated for chronic sinus infection, get an MRI, then an appointment with a neuro who in just ten minutes diagnoses CH - well, it beggars belief.
 
And you've a second visit with your neurologist set down for today!
 
Thrilled that you've been using oxygen so soon into your first ever cycle and interested to know how you got hold of it so quickly.  For many of us it's taken a week or more.
 
Please keep us informed.
 
 
 
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Re: How often will this happen once my period is o
« Reply #4 on: Oct 27th, 2005, 8:07am »
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Great that you got diagnosed so soon with a doc that's got sense!
 
This is the best place to be.  Read, read and read.  You will learn alot.
 
On the left is info that will help you and the people here will also be the best source of information you will ever get on this condition.
 
Good luck with finding the correct preventative, wishing you painfree days and nights and WELCOME!
 
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Re: How often will this happen once my period is o
« Reply #5 on: Oct 27th, 2005, 9:26am »
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on Oct 27th, 2005, 5:53am, djwspain wrote:
Hell family  
....I was directed to the site by my dr

 
yeah, Hell family, that's us!
 
I like that part that says his doctor told him about us...
way cool!
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Re: How often will this happen once my period is o
« Reply #6 on: Nov 2nd, 2005, 4:23pm »
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Yours is an amazing and hopeful story.
Some peole go years without a diagnosis, much less a doctor who knows what to do.
In the world of Clusterheads you are lucky indeed.
I can only hope you continue in this vein and have infrequent visits from the beast.
But whatever path you find yourself on, know that we will always be here for you.
Pain free wishes,
Kim
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Re: How often will this happen once my period is o
« Reply #7 on: Nov 6th, 2005, 7:06am »
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Sounds like your first cycle may be ending, at least we can hope for that. When I was episodic, they usually eneded about two months down the road. At the end they got worse and the doc would usually put me on DHE-45 to break the cycle.  
 
Imitrex works well for most as an abortative. O2 is great for most of us.  
 
Anyhow, welcome to the world of Clusterheads. Stay around here and read everything you can about CH. Your doc sounds like he's got his finger on the pulse of the situation. Just remember that we're all different and what works for one may not necessarily work for you. Just keep trying till you find YOUR thing. That's the one thing I've found over the years -- you have to keep trying different things until you find what works for YOU.  
 
And all the advice you get here is meant in the best possible way. We've all been where you are and wish you PF days soon. But we're here for you 24/7 if you need to vent, yell, or whatever.  
 
And let us know what the doc says -- you're one of the lucky ones to get diagnosed this quick.  
 
Hugs BD
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Re: How often will this happen once my period is o
« Reply #8 on: Nov 7th, 2005, 3:41pm »
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Sorry you were diagnosed, but you are blessed to have been diagnosed so soon! So many of us go years without  knowing WTF is going on with them. Read, read and read some more. This is a great site. Stay positive and stick around. This isn't something that just a pill can fix. But with a good doctor and support you can live with it. Good Luck!
 
Brandi
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