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(Message started by: Mattrf on Mar 21st, 2006, 4:14pm)
Title: New today
Post by Mattrf on Mar 21st, 2006, 4:14pm
I am new here, just found the site today.
I really don’t know how long I have been suffering from CH, I have had bad sinuses since I was young and in the past ten years can think of many times that I thought I had bad sinus infection that would not go away and would last two too three months at a time and now think they may have been CH and not sinus at all. CH got bad two years ago had an episode that lasted almost six months and was really bad and as you know nothing worked to get rid of the pain, I thought it was stress related headache from a bad boss, they stopped right after I left the job but now don’t think that was why they stopped.
This past December thought I had another sinus infection, they did a CT scan couple weeks ago and told me that there was nothing wrong with my sinuses and no evidence there was any infection and here I am 3 months after it started with the same headache and the doctor says I have CH.
I know everyone is a bit different on how the headaches act, mine seem to start almost when I get out of bed or like today before and last all day coming and going with only minutes of pain free time.
Every time I think about how mean I got two years ago to my wife and two girls, it scares the hell out of me that I am going to be that way again no matter how hard I try not to. My wife has been very supportive and forgiving, bless her hart but no should have to go through this. Sorry but venting since this is the first time someone will really be able to relate to me and understand what I am going through.
Title: Re: New today
Post by seasonalboomer on Mar 21st, 2006, 4:39pm

on 03/21/06 at 16:14:23, Mattrf wrote:
I am new here, just found the site today.
I really don’t know how long I have been suffering from CH, I have had bad sinuses since I was young and in the past ten years can think of many times that I thought I had bad sinus infection that would not go away and would last two too three months at a time and now think they may have been CH and not sinus at all. CH got bad two years ago had an episode that lasted almost six months and was really bad and as you know nothing worked to get rid of the pain, I thought it was stress related headache from a bad boss, they stopped right after I left the job but now don’t think that was why they stopped.
This past December thought I had another sinus infection, they did a CT scan couple weeks ago and told me that there was nothing wrong with my sinuses and no evidence there was any infection and here I am 3 months after it started with the same headache and the doctor says I have CH.
I know everyone is a bit different on how the headaches act, mine seem to start almost when I get out of bed or like today before and last all day coming and going with only minutes of pain free time.
Every time I think about how mean I got two years ago to my wife and two girls, it scares the hell out of me that I am going to be that way again no matter how hard I try not to. My wife has been very supportive and forgiving, bless her hart but no should have to go through this. Sorry but venting since this is the first time someone will really be able to relate to me and understand what I am going through.


Firstly, if you've been mean to wife and two girls -- don't, any headache is not their fault.

Now, to your headaches. Have you taken the Cluster Quiz on CH.com? Go through it carefully and if you find that your headaches do not meet the criteria in a number of areas, there's a good chance you have something else going on (which may be better for you actually).

Cluster Headaches, if you've read around the site some, typically don't last all day, giving you only minutes in between. As I write this, someone will disagree, but it is "Atypical". Can you function with the headache? Can you lie in bed and ride it out calmly and motionless? If so, you may be lucky, or have something else.

I'm not exclusionary on these things. I don't want anybody to have to be here sharing Cluster stories. They suck. But if it is something else, you'll want to know and many others, more knowledgeable that I on this site might direct you, or simply say welcome to the this rotten club.

Scott
Title: Re: New today
Post by Mattrf on Mar 21st, 2006, 4:49pm
At its worse I could barely function and was in tears, had to make trip to the emergency room it was so bad but think I am on the back side of the cycle now so they are bearable but ware me down, I am on pain medication so it is tough some times to tell when it’s there or not depending on how many pills I take. Still get the ice pick in the eye though several times a day that’s always fun but you already know that. Maybe it just feels like it last all day, my wife will make comments about I sound like I am having a good day and it will be because I am not in pain at that time but a little while later it hits again and I grab the pain pills. I would have sworn it was sinus since I have suffered those my whole life but a CT scan said didn’t have an infection or any evidence I had one any time recently so they sent me to the neurologist I saw two years ago the last time this happened and he said I am just having another cluster cycle.
Title: Re: New today
Post by BobG on Mar 22nd, 2006, 6:15am
Hello Matt,
Did you take the cluster quiz yet?

Pain pills? If you do have cluster headaches the pain pills will not help you. And it will probably make things worse. You need to find a neurologist that is familiar with clusters. If it was the neurologist you saw 2 years ago that prescribed the pain pills you need to find another one. There are lots of meds that can help you get through the pain and they don't include pain pills.
Title: Re: New today
Post by Mattrf on Mar 22nd, 2006, 11:49am
I like my doctor but he may not be informed enough on CH so I have sent him a lot of information and the PDF file I keep seeing that everyone says to take with you to your doctor so he can read it. I have also asked him to give me a list of the medications we tried two years ago since I did not track them and Imitrex is the only one I remember taking, but it did not help. If I don’t get an acceptable reply I will shop for a new neurologist that knows more about CH.
Title: Re: New today
Post by seasonalboomer on Mar 22nd, 2006, 12:33pm
Hey Matt,

You mention that you tried Imitrex but it didn't work. Did you take the injectable or in pills (or inhalable)? Most Cluster Heads will have little (or no) results from pills -- they just take too long. But, many do have success in aborting using injectables. In my case, it kills them in 5 minutes or less. When it happens it feels like a freakin' miracle just occured. If you haven't tried the injectable Imitrex, it's a whole new world from what you've tried before.

As for your other thread regarding why pain medication won't work. It is not universal that they won't work, but most pill-form pain meds just take too long. And, due to the pain's intensity often don't have enough oomph. There are some that have doctors that have found a mix of patches and other pain management to have a life but, unless you've tried everything else the trade-offs are something to take a really hard look at. Those that have a very extensive pain management regime using drugs would usually only recommend after all else has failed.

Scott
Title: Re: New today
Post by Mattrf on Mar 22nd, 2006, 12:45pm
It was the shots, they only made me feel sick on top of the headache. The ice pick is just to sharp I guess. lol
Title: Re: New today
Post by seasonalboomer on Mar 22nd, 2006, 1:03pm
tried O2 yet?
Title: Re: New today
Post by Mattrf on Mar 22nd, 2006, 1:20pm
Not yet, but will also asked the doctor about that as well. It sure sounds nice from what I have read on this site that's for sure.


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