16 months straight with no relief from the monster in my head (SUNCT) I am just so fed up with feeling crappy and being on drugs and knowing it would be worse if I stopped taking the drugs. I am tired of pretending to feel OK just so people don’t ask me how I am doing and tired of saying I am doing fine when I know I am not. Tired of giving my loving girlfriend less than she deserves and tired of her being surprised when I tell her how I am really feeling and seeing the surprise and pain in her face.  I am tired of worrying that this cycle will not end at two years like the last and keep going and not knowing how I will deal with that. I am tired of forcing myself to have a life, it is all I can do not to become a hermit and just hide in my house in the dark when I am home.
I have done well to this point in not letting this monster control my life and I do what I can as far as going out and staying active even though I am in pain, my girlfriend tells me I should just stay home and take it easy but I tell her if I start doing that I would become a hermit and I just do not want to let that happen, it is what I did my last cycle and it got me nowhere and I am sure caused even more depression over the headaches. I do get some good days and sometimes several in a row were my pain is only at a 1 or a 2 but it seems every time I get these days I get creamed for just about the same amount of days and pay dearly. It seems the monster always wants his pound of flesh and gets it. I know you all understand and that only someone with chronic pain can truly understand what we go through and it is hard to look at a loved one and tell that they just don’t get it even though they try really hard to but the only way they could is if they too suffered and that is the last thing we would want.
I know Nancy loves me dearly and she is in this with me and that she will do all she can t try and help me and put up with me and this monster in my head but I cannot escape the fear that one day she may decide that it has just become too much and I hate the fact that I know I would understand and not blame her.
Oh and on top of all this I came down with Carpel Tunnel in my right hand the other week, like I need more pain in my life. If you have never had it let me tell you it is so much fun to wake several times a night and have your hand feel like it is on fire and nothing you can do but walk around cussing and shaking your hand until it stops. So now I am in a wrist brace for six weeks but after two weeks I am sleeping through the night and it does seem to be getting much better. My work got me this really cool mouse thing to help me, if you have Carpel you should check it out, it is about $200 but worth it, it is called a RollerMouse Pro2 you can google it, you use both hands instead of one and it is in the middle instead of off to one side or the other and way easier than trying to become left handed.
Enough of the pity party, thanks for listening, I just needed to get that off my chest and I already feel a bit better.

Hugs to you Matt. I know you're doing your best and it's ok to just let it out and vent now and again. Be sure to remind Nancy that we're here for her too, especially in the Supporters Corner.

XO

Christy

Dang Matt. I cant imagine having to go through that for that long. I guess We 2 or 3 cycle a year people are pretty lucky. I know this is a touchy subjuct w/ some people, but have you tried the clusterbusters alternative treatment? I've seen were some people say they would NEVER try that just because 'OUR GOV." declares it illegal. But what about god? I'M sure he wouldn't mind. Anyway, just wanted to know.  Thanks.

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Brew, that is one of my all time favorite movies, I even own a copy and it never gets old.
“Would you like some more beans Mr. Taggard? By Gum! I thing you’ve had enough!”  ;D

Skull Buster, well yes I have tried them, I did the seeds and thought I was going to die I got so sick but did not give up and tried the shrooms but beside feeling good for a few hours it had no effect on my SUNCT headaches. The only thing that has given me full relief is a Lidocaine drip but can’t walk around with an IV in my arm all day. I tell people I would ware bananas on my head if it helped.  ;D
I am just in a low spot right now and feeling really depressed but it will pass as will the dam headache one day I hope sooner than later.

So Sharif is it true what they say? Oh, it’s twue! It’s twue! ;D There are so many great funny lines in that flick, Young Frankenstein is also a great one and if anyone out there has not seen these you have to go rent it because you are missing out.

Well, good. It worked. It got you to laugh. ;)

I feel ya! Been there done that, got some bumper stickers and t-shirts if your interested :P

Sorry you been have such bad days sending spare vibes your way!

Gena

Sorry Matt :'(

Gee wiz, I'm sorry to hear that you're having such a shit time of it :-/

Sending my thoughts/prayers your way.

Kate

Thanks guys, I am doing a bit better today, got a good night’s sleep and it helped. :)
Been keeping busy at work building a new email server and it always helps to keep my mind occupied so I don’t think too much about it. I just get scared sometimes that since my first cycle lasted a year and the second was two years that this cycle will not stop at two years and might go to three years or worse and I am just not sure how I will be able to handle that, I deserve better and so does my girlfriend. I try hard to be a good person and always try to do the right thing, I am a big believer in karma both bad and good and always try to get as much positive karma as I can get so I don’t know why I am made to suffer nor why any of you have to suffer. :-[
My girlfriend keeps telling me that she has no idea where I came from and doesn’t know how she got so lucky to find me, she says I am like no other man she has ever met, in a good way. ;)
Nancy keeps telling me that her friends even the married ones are very envious of her and when she starts talking about me they tell her to shut up.  ;D
I like that she feels this way and that others see me in a way that I am proud to be seen as, I work hard at it and I am very proud to say I am a good man and a man of my word and mean it and also that I know how to treat a lady and do it every day, hell after a year together and even living together now I still always get the door for Nancy even the car door. I hate feeling like crap around her I keep thinking that if not for the headaches life could not get much better and I could not be much happier but the dam monster in my head has to spoil it for me, I just keep telling myself life could be so much worse and there are those out there and even on this site that have it way worse than I do and that makes me feel bad about complaining, my heart goes out to everyone here and others who have not been so lucky to find such a great support group.
:)

Quote:

I try hard to be a good person and always try to do the right thing,

Excellent.


Quote:

I am a big believer in karma

Don't put too much stock into it. What happens happens. It's how you react to it that makes you what you are.


Quote:

Nancy keeps telling me that her friends even the married ones are very envious of her and when she starts talking about me they tell her to shut up. I like that she feels this way and that others see me in a way that I am proud to be seen as, I work hard at it and I am very proud to say I am a good man and a man of my word and mean it and also that I know how to treat a lady and do it every day, hell after a year together and even living together now I still always get the door for Nancy even the car door.

Marry.

Her.

Now.


Quote:

I hate feeling like crap around her I keep thinking that if not for the headaches life could not get much better and I could not be much happier but the dam monster in my head has to spoil it for me, I just keep telling myself life could be so much worse and there are those out there and even on this site that have it way worse than I do and that makes me feel bad about complaining, my heart goes out to everyone here and others who have not been so lucky to find such a great support group.

I keep coming back to this fact in my own mind: If it weren't for this terrible affliction, I would never have met some of the finest people that walk the face of God's green earth, people who I am honored to call my friends.

Quote:

I keep coming back to this fact in my own mind: If it weren't for this terrible affliction, I would never have met some of the finest people that walk the face of God's green earth, people who I am honored to call my friends.

I too think, well if this is what I had to have to not only meet the (self proclaimed  ;)) greatest man on earth, but the greatest people on the earth <3  :-* THEN SO BE IT!!

Kilroy 2.0 wrote on Jun 4^th, 2010 at 8:39pm:

I too think, well if this is what I had to have to not only meet the (self proclaimed  ;)) greatest man on earth, but the greatest people on the earth <3  :-* THEN SO BE IT!!

You got it, sister. ;)

Tis true brother Brew. I always thought we had friends, I had NO IDEA what friends were though until we got know folks here.

Matt you do sound like a lucky man, and Nancy is surely a lucky woman.

When I suffered, as you currently do, I felt very alone. I don't know if this site existed back then.  Nobody knows the pain, the hell your going through but you. All I can say is keep fighting, and never ever quit seeking an end to your pain.  I wish you luck...

Damned rare I agree with that Brew guy......but:

1: Marry her.

2: Met some damned fine people thanks to this affliction and this board! ;)

Just sayin....

Joe

Guiseppi wrote on Jun 5^th, 2010 at 10:15pm:

Damned rare I agree with that Brew guy......but: 1: Marry her. 2: Met some damned fine people thanks to this affliction and this board! ;) Just sayin.... Joe

Not really so rare. ;)

I feel your pain Matt. I get no relief. I have had 6 or 7 attacks a day everyday for the last five years with the exception of one whole month that i didn't have a single one. I also did the hermit thing. It made me even more miserable. So like you I decided to just try to deal with the pain and live my life normally. Notice I said TRY. I'm not great at dealing with it but I do the best I can. But i wanted to say good job on not becoming a hermit. As for Nancy.....GOD BLESS HER. Please tell her I said that. You are very lucky to have her and she is very lucky to have you. Good luck guys!!!!

Last night we walked as we do about a mile to play tennis, I lasted about 40 minutes and it started ramping up and had to stop and it was a very long walk home with my head pounding as it is right now.
I love being outside and being active and I guess I enjoy showing the beast he does not rule my life and I can still do what I want most of the time even if he does not want me to.
On the walk home Nancy said if she had just one wish it would be for my headaches to go away, I agreed and said if I had to make the choice between being rich and being healthy I would choose my health in a heartbeat. I guess it really takes losing your health to understand the saying “if you don’t have your health then you don’t have anything” Sure wish we all could have ours back that’s for sure.

Hang in there Matt.  I am new to the sight but know the pain you are going through.  I get nervous at every cycle that it just might not go away and that anxiety brings on its own issues.  When you are having a headache you want a guillitone (did I spell that right) to take it away and when you are not having a headache all you do is think about them.  It's wonderful you have someone so supportive. 

Brett C. 

The end must be nigh as I agree with that Brew guy too.

Charle

Had a bit of a rough week but the weekend was fairly light pain wise and that was nice, I even picked up a new toy and sold the old one really fast. My girlfriend and I both decided we needed something a little newer to drive so she was going to get a small sport convertible to replace her SUV but could not decide on what and finally decided to be a bit practical and get a small sports sedan and found a nice 04 Acura TL and is really happy with the car. Mine was a 95 Toyota T100 4WD that I have had for about five years now and I wanted a newer version of the same truck and found a 2004 Tundra in great shape and got a great deal on it, it’s a white Toyota Tundra TRD 4WD Access cab with a small lift kit and NAV with a backup camera the only thing I would have liked that it does not have would be leather interior but can’t have everything I guess and it was hard enough to find this truck and I had to drive an hour to meet the guy and that was with him driving two hours to meet me. My old truck went to the first guy that showed up to look at it and he did not even try to get me to come down on my price and paid me 6k in green backs, only took like 30 minutes from when he showed up and only had the truck posted for sale for less than two days. These extra cab 4WD Toyota’s are hard to find people just do not want to sell them and the guy told me he had been looking for a while and every time he found one it would be sold before he could get to see them, same problem I had when I bought the 95 I had, the guy I bought it from was counting the money and his mom was trying to talk him out of it while he was counting. ;D
Well just glad I got my new toy and I am enjoying it and we are going to take it up to a lake to go wake boarding with friends this coming weekend just hope the monster behaves while I am up there.
:-/