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Topic: Just another rant. (Read 350 times) |
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Mattrf
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Thank god for my wife and kids who keep me alive.
 
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Just another rant.
« on: Jun 15th, 2006, 6:30pm » |
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OK so I have SUNCT not CH but most of you know that about me already.
The new scary meds I have been on now for almost two months seemed to be helping and then this past Monday I had a really bad day, and now it’s Thursday and Monday has not ended yet. I have been bouncing around between a 5 and an 8 since Monday. The doctor wanted me to cut back on the pain meds, ya right! Make the friggen pain stop and I will!
I know I will get through this but right now I feel like I have had my ass handed to me four days in a row, normally I only have pain during the day but I got up last night to make a trip to the john and before I was done my head was killing me, it mellowed when I laid back down and I was able to go back to sleep but that normally does not happen.
Just passed the seven month mark and just feeling like I have gone far to many rounds with Mike Tyson you know?
I have a feeling that Fathers day is really going to suck no matter how nice my kids are to me, I just hate the look in there eyes when they see me in pain. It really sucks when my little one wants to play and looks at me and says, I would like you to play with me but you have a headache don’t you? This crap doesn’t just rob us of good times it robs our children to and I think that is one of the hardest things to deal with.
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There is no stronger a person then one who can deal with brain pain and still function.
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Katherinecm
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Re: Just another rant.
« Reply #1 on: Jun 15th, 2006, 6:53pm » |
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I'm sorry Mattrf,
I know it's hard. If it's any consolation my dad had headaches and sometimes wasn't able to play with us. We understood because the rest of the time he did go out of his way to play & create adventures for us. When he passed away the thing we remembered wasn't the headaches- it was all of the wonderful things he did do for us. In fact, we all might have forgotten all about it except after I started having attacks I found these old letters from the early 80's in which mom described his pain as just like mine, but centered in his left eye instead of right. When I read that I remembered all of the other times he'd had headaches, but not until then. What's important to kids is feeling loved and valued, that your eyes light up with joy when they come in the room. Not that you be healthy enough to play with them at every moment they desire you to. Kids don't even want to play with their friends at every moment their friends want them to. They understand that (though they may whine occasionally), and they love you. Maybe you can give them a way to "help" so they feel important. My dad used to have me be quiet, and when the pain was over rub his head or feet. It made me feel good to know I was important enough to help.
I'll pray a solution comes to you,
Katy
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"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin
"It is not death or pain that is to be dreaded, but the fear of pain or death." Epictetus
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Mattrf
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Thank god for my wife and kids who keep me alive.
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Re: Just another rant.
« Reply #2 on: Jun 15th, 2006, 10:28pm » |
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Well after four bad days and most of today, looks like I am getting a much needed brake in the pain. Not sure why it dropped of but not going to complain, just going to enjoy it and hope it is not to short lived. Been 3 hours now at about a 1 and I have not been at a 1 for some time now so this is great! 
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Mattrf
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Re: Just another rant.
« Reply #3 on: Jun 16th, 2006, 11:30am » |
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Well the brake is over, I woke up at a 3 and it started climbing like it has for the past week but the brake last night was nice and oh so needed. My pain meds run out today so I will be getting a call from my doctor asking me why I need more and they should last me longer, that kind of crap yet again. For some reason he thinks 60 pills should last me two weeks when I have to take them two at a time, do the math dumb ass that’s a week not two! I have tried to cut back but dam it, it hurts and the meds take the edge off and help me keep my sanity and if I did not have them I would wind up being suicidal and I know it. Wish he would get that through his head and stop giving me crap, if this stays on track I have two months to go and after seven so far two does not seem to bad, just need him to be a little more compassionate for a couple more months and I will be done, I hope.
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There is no stronger a person then one who can deal with brain pain and still function.
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E-Double
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Are we ourselves?
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Re: Just another rant.
« Reply #4 on: Jun 16th, 2006, 12:06pm » |
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How many "attacks" do you have per day?
I understand the shorter zaps.though not a TAC I get sometimes thousands of icepicks a day...idiopathic stabbing headache fun name
Indomethacin kicked those and now they just seem to come in lesser amounts and not daily since off meds.
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Jonny
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Give me a shovel Ill dig my own grave!
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Re: Just another rant.
« Reply #5 on: Jun 16th, 2006, 6:47pm » |
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on Jun 15th, 2006, 6:53pm, Katherinecm wrote:| I know it's hard. If it's any consolation my dad had headaches and sometimes wasn't able to play with us. We understood because the rest of the time he did go out of his way to play & create adventures for us. |
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Thats one hell of a piece of advice!!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Mattrf
New Board Hall of Famer
Thank god for my wife and kids who keep me alive.
Gender:
Posts: 817
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Re: Just another rant.
« Reply #6 on: Jun 16th, 2006, 6:49pm » |
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Well I have SUNCT not CH and the main difference besides non of the CH meds working is I get a sustained bad headache around a 5 or 6 most of the time and I get up to 40 spikes a day either like a red hot poker to the eye or an ice pick to the eye both only lasting maybe a minute or two and some times just seconds but very painful. I have had some that almost dropped me on the spot. The similarity is that it runs in cycles and returns just like CH but it is normally a day time thing. It is centered around one eye just like CH and that was why they thought I had CH at first but changed doctors and he changed my diagnosis and showed me in a medical book how my symptoms matched perfect for SUNCT and not CH.
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There is no stronger a person then one who can deal with brain pain and still function.
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