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Retta34
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New gal
« on: Feb 20th, 2004, 10:06pm »
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Hi everyone,   I just got my diagnosis 2 days ago.  My doctor sat down and explained most things to me, after giving me some Imitrex nasal spray and a prescription for Prednisone.    Of course, after leaving his office, I thought of tons of questions.    I think I may have had my first cluster cycle when I was a senior in high school.   I remember having these headaches that would strike 2 or 3 times a day for a few weeks and then totally go away.    It was always behind my right eye.     I don't recall having any more of these headaches until 1999 which was about 11 yrs after the last cycle.     Again, it was the same thing, horrible pain behind my right eye.   My eye would tear up, my right nostril would clog up and I felt like I was dying.   These headaches hit me more in the night hours though.   I would go to sleep and then wake up with one---that one would go away, and then another one would wake me up.   I think my family thought I was losing my mind.   Or else they thought I was having sinus headaches and just couldn't deal with a little pain. So now, here I am.   This cycle started 1 week ago.   I don't think it's as bad as the last cycle, but I honestly can't remember.   Is it possible that I would forget the pain?    Again, these are waking me up.   Seems like the only thing I can do is shove my pillow into my right eye and apply pressure.   Of course, now I'm wondering if I'm damaging my eye.   How can someone not be blind after going thru this.   Is eye damage something I have to look forward to?   I just have so many questions.    From what I've read on the website and what my Dr. told me--it appears I am an episodic sufferer.   What I didn't ask my Dr. is how often can I expect these.   Will I go thru this cycle and not have another for another 4-5  yrs, or can I expect my cycles to come quicker.   Will this continue on for the rest of my life?   What about my daughter--is this something that she could inherit from me? I guess I'm just looking for someone to talk to.   Noone in my family suffers from these--none of my friends know what I'm talking about.     Thanks for letting me vent....
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TxBasslady
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Re: New gal
« Reply #1 on: Feb 20th, 2004, 10:52pm »
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Retta,
Welcome to the board.
 
CH is NOT predictable!  The beast comes and goes at will.  Some episodics......become chronic.  Lets just hope that isn't the case for you.  But to be able to time the visits is probably not gonna happen.
 
I went on a Prednisone taper last Sept, and it broke my cycle....I have been pf ever since.  However, I have no trust in the beast.  I have no guarantee that he's gonna stay away.
 
Good to hear that you have a good doc.  Seems like he may be somewhat knowledgable about CH.
 
You came to the right place for support and information.  Great folks here!!!  Hope you stay with us.  Let us know how you are doing.
 
PF vibes,
 
Jean
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t_h_b
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Re: New gal
« Reply #2 on: Feb 20th, 2004, 11:19pm »
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Welcome aboard.
 
Some quick answers:
 
No, you probably can't forget the pain but it could be hard to compare attacks or cycles.  
 
Like Jean said, CH is unpredictable.  (I call it sneaky.)  If you're in a pattern it changes.  If you stay up late past your normal attack time, it just waits until you do go to sleep.  Some episodics will have to give you information on cycles.
 
You can get permanent "droopy" eye from CH.  I don't know about the prevalence.  Haven't heard about blindness but do be careful about shoving things in or against your eye.  Have you tried cold packs or warm showers instead?  I also sometimes massage my head and neck and rub my eye but it really doesn't seem helpful.
 
There does appear to be a higher rate of CH in family members of ClusterHeads but there haven't been a lot of well-designed studies on this.  Current best thought is an incidence of something like 0.01% in the general population.
 
You might talk to your MD about using the Imitrex injections because more people seem to be satisfied with them over the nasal sprays.  The two of you might also consider verapamil as a preventative and you should certainly try oxygen as an abortive as it is relatively safe and often quite effective.  Melatonin has helped a lot of us and many swear by psilocybin.  Check out some of the links to the left.  The medication survey results have been helpful to me.  There is also more information available on the OUCH website in the library.
 
There are a lot of preventative and abortive treatments and combinations and I hope you'll be able to find something to help you.
« Last Edit: Feb 20th, 2004, 11:20pm by t_h_b » IP Logged

No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Re: New gal
« Reply #3 on: Feb 20th, 2004, 11:56pm »
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Quote:
These headaches hit me more in the night hours though.   I would go to sleep and then wake up with one---that one would go away, and then another one would wake me up.

Very typical of cluster headaches. They attack during REM sleep mode.
Quote:
I think my family thought I was losing my mind.   Or else they thought I was having sinus headaches and just couldn't deal with a little pain.

Very typical reaction from “outsiders”
Quote:
I don't think it's as bad as the last cycle, but I honestly can't remember.   Is it possible that I would forget the pain?

Nope. You may have forgotten how bad the pain was but the “kind” of pain is like no other. You will always know exactly the pain of a cluster.
Quote:
Is eye damage something I have to look forward to?

That’s very doubtful. If you need something on your eye you might try an ice pack.
Quote:
I just have so many questions.

All you have to do is ask.
Quote:
it appears I am an episodic sufferer.

At this point in time you are. If you still are still in the same cycle a year from now you will be called chronic.
Quote:
Will I go thru this cycle and not have another for another 4-5  yrs, or can I expect my cycles to come quicker.

Maybe yes and maybe no. Nobody knows when or how bad the next cycle will be.
Quote:
Will this continue on for the rest of my life?

The good news is Probably not. The bad news is you may have to wait until you’re in your 50’s before you out-grow them.
Quote:
What about my daughter--is this something that she could inherit from me?

Very doubtful.
Quote:
I guess I'm just looking for someone to talk to.

You’ve found the right place. We’re open 24 hours a day.
Quote:
Thanks for letting me vent

Vent, schment. Everybody does it.
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Re: New gal
« Reply #4 on: Feb 21st, 2004, 3:59pm »
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I just noticed your message after I posted mine.  I'm new to the group as well, and I'm a female and from what I've read, we're the minority when it comes to CH.  Prednisone has always worked for me.  What dosage did you start out with on the prednisone?  My doctors weren't available today, and the Physician Assistant wasn't sure how much we should start out with, so we agreed to 40mg.
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Giovanni
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Re: New gal
« Reply #5 on: Feb 22nd, 2004, 9:57am »
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BobG wrote:
 
Quote:
The good news is Probably not. The bad news is you may have to wait until you’re in your 50’s before you out-grow them

 
That's what I thought too.  I'll be 57 in March and they're still kicking my ass.
 
Hi Retta,
 
Your cycle can change over time to longer, shorter, different times of year.  You could go a year without them or a number of years.  I have never gone over 12 months in the last ten years.  Usually average 7 months pf between cycles.  
 
If you are happy the the imitrex spray, I would continue with them.  I never had luck with the spay and use injections which work in 5 minutes with me.  Oxygen at the configuration to the left works on a bunch of us without the possibility of rebounds or longer cycles using the imitrex.
 
Here's the to the "alternative" treatment, should you want to investigate it:
  www.clusterbusters.com
 
Anyway, welcome to this forum and educate yourself as mush as possible.
 
Best Wishes,
John
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Bob_Johnson
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Re: New gal
« Reply #6 on: Feb 22nd, 2004, 10:58am »
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Sending a e-mail message which is to long to post here which has sources of information on cluster.
 
Suggest you start with one of the books because this is a more coherent, focused way of understanding cluster and its treatment. After you have a good overview, then more focused, specific questions will come to mind which we can help you with.
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Charlie
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135447360 135447360   mondocharlie   mondocharlie
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Re: New gal
« Reply #7 on: Feb 23rd, 2004, 1:58pm »
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Welcome and I can't add much to the other posts other than age can be a factor. Mine disappeared at 45 and for most of this year, I'll be 57. Not at all looking to be older than John  Roll Eyes
 
If you look around, you'll find some good ideas and ways to deal with this horror. You'll certainly find support and as Bob says: Rant away. It's why DJ created this place. Bless his crusty heart...  Cool
 
Charlie
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