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(Message started by: Spade24 on Jan 23rd, 2004, 1:21pm)
Title: How does CH effect your life?
Post by Spade24 on Jan 23rd, 2004, 1:21pm
For me I can't go to school without having to leave because i have a C.H. When i wake up and the sun gets in my eyes i get one.  And when i go outside and it is cold i get one just about every thing i do. But exedrin works and banging my head aginst the wall works too but my doctor gave me imitrex, axert, topamax, oxygen, frova, and other stuff that i cant even remember, and my doctor said it might even last up too 10 to 15 years till it goes away and to me that is like being sentenced to jail for something i did not do why me why anybody
 Age16                                                              
Spade24      
P.S. feel free to email me at gmoney000024@aol.com
Title: Re: How does CH effect your life?
Post by thomas on Jan 23rd, 2004, 1:28pm
It destroys my dignity, rips away my sanity, makes everything that is good in the world, fade to black.  The pain possesses me, confuses me.  It's a uphill battle that I face alone.  Just me and my tormentor.  I can't think, work(very well - I still show up).  Social events are out of the question.  I seclude myself.  I don't want to talk to anyone, touch anyone, be around anyone.  I'm overcome with fear and dread, waiting for the next attack, wondering why I even bother going on.(But I do go on and always will, 'cause I wont let the bastard win).  That's pretty much how ch affects my life, it ruins it for 3-4 months out of the year, it reduces me to an almost animal-like state.  Oh yeah, welcome aboard. :)
Title: Re: How does CH effect your life?
Post by Carl_D on Jan 23rd, 2004, 1:31pm
Spade! Welcome.

Sorry you had to find us under these circumstances, but you've found the right place. Dude, definitely look for a neurologist to treat your condition; and DON'T lock yourself in the jail just yet. Some people have cycles that only last a few weeks out of the year, and with the right meds, you can learn to live with it.
What age did this start (how long ago?) I can sympathize with you though, mine started at 17. For some they get better, for some they get worse. The important thing is to have a proper diagnosis and treatment. Definitely try Imitrex injections. If you find they work for you, you can also try the Imitrex tip over to the left. It helps to extend your meds. Again, welcome.

Peace,
Carl D
Title: Re: How does CH effect your life?
Post by Carl_D on Jan 23rd, 2004, 1:34pm

on 01/23/04 at 13:28:07, thomas wrote:
It destroys my dignity, rips away my sanity, makes everything that is good in the world, fade to black.  The pain possesses me, confuses me.  It's a uphill battle that I face alone.  Just me and my tormentor.  


Thomas, to quote Kevin Spacey in "American Beauty:"

"I think you just became my personal hero."

Peace,
Carl D
Title: Re: How does CH effect your life?
Post by Spade24 on Jan 23rd, 2004, 1:37pm
it has happened to me for a year and a half since 14/ and a half but my doctor said it was because i smoke ciggarettes, do any of you guys smoke too that is what she said and i have gotten use to them and i can usually see them comming an hour to half an hour before they attack but when they happen to me i kinda block them out the best i can but the eye pain is so intense i cant cose it or open it and i go deff in one ear and my gums hurt on one side of my face and my nose runs on one side of my face and my vision goes black in one eye and i got a cat scan and samples of meds and none help too much but i just have to live with it for a while now
Title: Re: How does CH effect your life?
Post by Jackie on Jan 23rd, 2004, 2:04pm

on 01/23/04 at 13:28:07, thomas wrote:
It destroys my dignity, rips away my sanity, makes everything that is good in the world, fade to black.  


Yes, Thomas, I'm sure it does.....I'm quite sure it does.  There is something I'd like to comment on as I have met you in person.  After you whip the beasts ass and send him on his way, you return to a wonderful, giving, compassionate and sensitive man with plenty of dignity.  That's my story and I'm sticking to it...

Welcome to the board, Spade.  This is a community/family of clusterheads and their supporters....always ready with advice, help and a shoulder to lean on.

Jacks 8)
Title: Re: How does CH effect your life?
Post by JDH on Jan 23rd, 2004, 2:11pm
Welcome home Spade.
There's tons of info here and some really good people...hope you stick around for awhile.



on 01/23/04 at 14:04:32, Jackie wrote:
Yes, Thomas, I'm sure it does.....I'm quite sure it does.  There is something I'd like to comment on as I have met you in person.  After you whip the beasts ass and send him on his way, you return to a wonderful, giving, compassionate and sensitive man with plenty of dignity.  That's my story and I'm sticking to it...

Jacks 8)


Well Jackie the Thomas that I met in Iowa must've been in cycle 'cause he was one mean mutha'...oh wait, this belongs on the Real Deal on Iowa thread.  ;)

Jim
Title: Re: How does CH effect your life?
Post by Jackie on Jan 23rd, 2004, 2:14pm
LMAO  Jim....
Maybe we should bring that thread back up for further comment....I'm not sure I was finished yet.... ;;D

Jacks  8)
Title: Re: How does CH effect your life?
Post by Tiannia on Jan 23rd, 2004, 2:37pm

on 01/23/04 at 13:37:13, Spade24 wrote:
my doctor said it was because i smoke ciggarettes, do any of you guys smoke too that is what she said and i have gotten use to them and i can usually see them comming an hour to half an hour before they attack but when they happen to me i kinda block them out the best i can but the eye pain is so intense i cant cose it or open it and i go deff in one ear and my gums hurt on one side of my face and my nose runs on one side of my face and my vision goes black in one eye and i got a cat scan and samples of meds and none help too much but i just have to live with it for a while now


sorry spade.  No not all of us smoke. I used to since i was 14 until I was 24 (1-2 packs a day) then I stopped but my clusters did not start until I was 33.  So your doc is full of it.  Yes the pain is crazy but still try different things and work to get into a specialist a nuero.  There are things that can help. And there are things that can make them lessen.  You are not alone and we can help even if it just to understand the screaming in the night.

Tiannia
Title: what was the question?
Post by rumplestiltskin on Jan 23rd, 2004, 2:37pm
CP? How does CP effect my life? well...my 17 yr old son Adam has had CP since birth he cannot walk, talk, roll over, bathe himself, feed himself. He also now has irreversable scoliosis which has twisted his back in a almost a 90 degree angle that causes daily pain and makes finding a comfortable position in his wheelchair almost impossible. He fights pressure sores constantly. He indicates "yes" by looking up. He indicates "no" by an almost imperseptable minisule sideways movement of his head. He uses his elbow to click a button that operates a communication computer which is mounted to his wheelchair to speak, control remote controls and interface with other computers. He can move his left arm enough to kinda move a joystick which moves his wheelchair and kinda play wrestling on Playstation.

He has normal to above average intelligence and radiates love. He does the best he can in high school. He has an A-B grade average. He has been on stage in 6 plays. He accepts and endures what he can't do and whatever he can do....he does with style and grace.

OH...CH? you asked. I have CH. I try to mirror my son. During attacks it totally controls me. Adam laughs his ass off at me as I moan and do jumping jacks with my O2 mask on. When painfree....I bust my ass to get to get and give all the joy out of life I can.

Years ago I said "man I gotta do something about this shit"...I found this site, learned to identify the exquisite characteristics of my CH, followed advice I found here and now manage my pain very well....I also found a hot chick...but thats a another story

Walk in the sunshine
den
Title: Re: How does CH effect your life?
Post by Charlie on Jan 23rd, 2004, 3:27pm
Here I was gonna place one of my stupid posts.

Thanks Den.

Charlie
Title: Re: How does CH effect your life?
Post by Cerberus on Jan 23rd, 2004, 3:54pm
Welcome Spade,

Sorry you have had to find us but glad you did, and I'm sure that soon you will be glad as well. Read the information in the buttons to the left. Arm yourself with all the info you can, because you wil find that doctors know very little about CH. Especially E.R. docs for some unknown reason. There is research regarding smoking and CH but basically no-one knows for certain what causes it.
 I smoke and started getting CH around 29 (35 now) and wasn't diagnosed until 2001 (I think, I can't remember what I did yesterday let alone a year or two ago) Anyway, I was lucky and got the medications and Oxygen right away.
 CH pretty much rules my world while in cycle. Find it very difficult to deal with people in a one on one situation, Large groups are definately out of the question. On the work front I was also lucky, until recently I had available space and time to deal with the pain. Toting my O2 rig and meds everywhere I go to avoid getting hit with no treatment readily available.   The paranoia of the next hit is always there. My kids, have dealt pretty well with the situation, it scares the hell out of them, but, they understand just the same.

This message board is the best place you could have come to for support and knowledge. There is plenty to be had and a great deal more. Try not ot let CH rule your life so that you can't function normally, its probably the hardest part but life has soooo much more to offer than to let this get the best of you.

Lotsa luck,
Ramon
Title: Re: How does CH effect your life?
Post by echo on Jan 23rd, 2004, 3:56pm
Life???

Is there such a thing with CH?
Title: Re: How does CH effect your life?
Post by Kevin_M on Jan 23rd, 2004, 5:19pm
Den,

I can't disspell that lump in my throat.  I don't know if I should read it again.

Kevin M
Title: Re: what was the question?
Post by Roxy on Jan 23rd, 2004, 5:37pm

on 01/23/04 at 14:37:19, rumplestiltskin wrote:
CP? my 17 yr old son Adam has had CP since birth he cannot walk, talk, roll over, bathe himself, feed himself. He also now has irreversable scoliosis which has twisted his back in a almost a 90 degree angle that causes daily pain and makes finding a comfortable position in his wheelchair almost impossible. He fights pressure sores constantly. He indicates "yes" by looking up. He indicates "no" by an almost imperseptable minisule sideways movement of his head. He uses his elbow to click a button that operates a communication computer which is mounted to his wheelchair to speak, control remote controls and interface with other computers. He can move his left arm enough to kinda move a joystick which moves his wheelchair and kinda play wrestling on Playstation.

He has normal to above average intelligence and radiates love. He does the best he can in high school. He has an A-B grade average. He has been on stage in 6 plays. He accepts and endures what he can't do and whatever he can do....he does with style and grace.


I know some people are not going to like what I'm about to say, but I gotta say it.  I'm sorry this condition has been inflicted upon you, but you found the board, and this is a wonderful place to learn to cope with these things.  They are debilitating, life disrupting and sometimes very hard to manage.  But, the key is....they aren't devasting.  They will not kill you, in and of themselves.  You do have to learn how to handle them, or you can spiral downward.....fast.  

From your post above, if I read it correctly, you have been chronic for 1 1/2 years.  I'm chronic too.  That means you know your head is going to explode every day, come hell or high water.  You know it's going to happen, so you keep yourself prepared to deal with the SOB.  

Anytime I start feeling down about the toll they are taking, or beginning to get depressed about another movie or social situation I have missed or had to leave......I just kind of smack myself up side the head.  I nursed my mother through ovarian cancer, I wouldn't trade this condition for cancer.  Den and Georgia deal with Adam's condition, I wouldn't trade clusters for CP.  I know it sounds pollyannaish....but, there are a lot of things in life that are much worse than this condition.  Yes, they fuck up our lives, but we do have a life in between hits.  

Read up on the info presented here and on the OUCH site.  Use the 02 and the triptans.  Try the medications recommended.  Verapamil and lithium work for a lot of chronics and episodics.  Go read clusterbusters.com.

I know, at your age, it is a very difficult ordeal to contend with, and we will help you all we can.  But, you can have a life....and a damn good one.

When I read again what Adam lives, day in and day out......it makes me thankful for small favors......like clusterheadaches.

Now going off my soapbox,
PFDAN,
Tracey
Title: Re: How does CH effect your life?
Post by nojo on Jan 23rd, 2004, 5:41pm
Hello Spade,
Firstly, my sympathies,
Secondly, I don't agree with your doctor's diagnosis of smoking.
I got CH at age 18, and 35 years later still suffer. The first thing that I do when I feel an attack coming is to light a cigarette. For me, this has a calming effect on the body, and helps me concentrate on the next course of action.
If you get a half hour/hour warning of an attack, that is good, and I am sure that if your doc prescribes you imitrex or similar, you can go over these attacks with minimal suffering. If you read all the info, you will conclude that each of us have our own way which works best for us.  Just don't be afraid to ask questions, we are all here to help.

nojo
Title: Re: How does CH effect your life?
Post by fubar on Jan 23rd, 2004, 6:12pm
Adam,

Don't listen to Den.  He only came here for the chicks.

But seriously, about your headaches.  First of all it sounds like you need to find a new doctor.  It doesn't sound like you're being treated, it sounds like your being scolded for smoking and then having a bunch of random medications thrown at you.

This condition sucks ass (Do I win a prize?  I said that twice today).  No two ways about it, it can ruin your life if you let it.  The way NOT to let it is to get some decent healthcare and resolve to fight it.

There are amazingly effective treatments like Oxygen to help abort the headache, and there are other medications that take quite a while to become effective but they can work quite well.  It's not like taking an aspirin, you have to take the medications regularly in order for them to build up in your system and give you relief.  I found success with a combination of Verapamil and Lithium.  It happened to take me over 15 years to find that combination and try it long enough to know it would work, but I found it.  In order for ANY of this to work though, YOU have to be commited to helping yourself.

Find a good neurologist (you parents should read this stuff) and get a proper diagnosis.  Make SURE you get a prescription for Oxygen and use it as described in the information availbale on this site.  Talk to your neurologist about long term treatment, not just instant pain relief.

Most importantly, realize that the only one who can help you in the end is YOU.  You have to educate yourself and demand the proper treatments.

Or I guess you could live with this pain ruling your life.

-Fu
Title: Re: How does CH effect your life?
Post by jonny on Jan 23rd, 2004, 7:12pm
It dont anymore, my boot is so far up the beasts ass he's scared.

This will soon change in a week and he will have the upper hand, all I have to say is find the right prevenitive cocktail that will work for you, once you do (and it may take time) stay with it.........I hope you have the luck I have had.

.....................................jonny
Title: Re: what was the question?
Post by Tiannia on Jan 23rd, 2004, 7:22pm

on 01/23/04 at 17:37:29, Roxy wrote:
....but, there are a lot of things in life that are much worse than this condition.  Yes, they fuck up our lives, but we do have a life in between hits.  

Now going off my soapbox,
PFDAN,
Tracey


Tracey

I want to say thanks, Roxy.  It is good to see this.  There are times when I forget this.  But it does not matter how many time or how bad I get hit.  I will be damned if I will let this fucking beast win.  >:(  I will brush myself off, get up (granted with help at times) but I will be here and he will be gone.

Tiannia (Traci)
Title: Re: How does CH effect your life?
Post by Sean_C on Jan 23rd, 2004, 9:14pm
To put it in a nutshell

www.a-dzign.com/jonny/

open the DRIP link........This download says it all bro!!!!

Thanks for sharing this with us Jonny

PFDAN

Sean
Title: Re: How does CH effect your life?
Post by captdshea on Jan 24th, 2004, 9:33am


Welcome to the board Spade 24,
C.H. injails me to, This is what is hard for me.
I will never let it touch my Dignity or Sanity
CH.com makes me stronger than that.

Quit smoking if you can it will help..

David
Title: Re: How does CH effect your life?
Post by Melissa on Jan 24th, 2004, 9:59am
It used to put my life on hold for the duration of my cycle.  I used to put everyone and everything on the backburner, until I had to take care of a newborn while in cycle.  I was exhausted, but I was determined not to let the CH's get in the way of my duty to this tiny fragile child depending on me.  I learned to make myself go to sleep at night, and after getting hit (after giving myself imitrex injections or inhalers).  No more staying awake scared to sleep, I couldn't afford to do that.  I owed it to myself and my baby to take the best care of myself I could.  I thank God for the meds, and I am proud of myself of having the right mind to do what I had to.  I know now what to do when the next cycle comes, to live my life to the fullest during the PF time I have.  I have only one life and I can't do it over, or practice for the next one.  Yes, I get the pain and the feelings of wanting to die, but I live by what my mom had told me, that God wouldn't give me more than I can handle.  I've been through a lot of shit, and I'm still here.  I am worth living, or I never would have been born.
Title: Re: How does CH effect your life?
Post by brad267 on Jan 24th, 2004, 11:28am
If it doesn't kill us, it makes us stronger......   And we ain't dead.

-Brad
Title: Re: what was the question?
Post by River_Rat on Jan 24th, 2004, 3:35pm

on 01/23/04 at 17:37:29, Roxy wrote:
Anytime I start feeling down about the toll they are taking, or beginning to get depressed about another movie or social situation I have missed or had to leave......I just kind of smack myself up side the head.  I nursed my mother through ovarian cancer, I wouldn't trade this condition for cancer.  Den and Georgia deal with Adam's condition, I wouldn't trade clusters for CP.  I know it sounds pollyannaish....but, there are a lot of things in life that are much worse than this condition.  Yes, they fuck up our lives, but we do have a life in between hits.  


TOUCHE


I too watched both my parents die of cancer, our beast is an as*hole but there are worse beasts out there.

Your a young man, you may not have to deal with these things as long as some of us, (I hope to God) they may find a cure in the near future, one never knows, 20+ years for me.

Welcome aboard, sorry you have to be here, stay with us it makes things easier,

NORM
Title: Re: How does CH effect your life?
Post by kim on Jan 24th, 2004, 3:51pm
It hurrts, yes.

could hurt worse i s'pose.

I just keep getting up.  I want to.  When and if i don't wanna git up no more i s'pose i won't.  


Welcome.  Lots of help here - well worth the carpal tunnel :)
Title: Re: How does CH effect your life?
Post by jonny on Jan 24th, 2004, 3:57pm

on 01/23/04 at 21:14:20, Sean_C wrote:
Thanks for sharing this with us Jonny


Dude, the only thing I have to do with that video is to link it to my website.....for all I know im breaking copyright laws doing it......Ask me if I give a shit.

..............................jonny
Title: Re: How does CH effect your life?
Post by cathy on Jan 24th, 2004, 4:00pm
Spade, sorry to read your post too young to be having to deal with this, but you've found a great site for support, friendship and understanding....

Cathy

Jonny ....do you give a shit... ::)
Title: Re: How does CH effect your life?
Post by BlueMeanie on Jan 24th, 2004, 4:25pm
Welcome Spade.

CH's suck big time. Problem is we MUST deal with them until there is a cure. They don't end after 15 yrs like your doc says. It seems that once you've been tagged by the Beast, he's got you. The only thing you can do is keep fighting like the rest of us.

The good news for me is 25 years ago I had to take every attack whimpering and screaming until the Beast drained me have all energy. Now-a-days things have gotten alot better thanks to the meds that continue to work. (at least somewhat).

I believe as time goes on the meds will even get better and who knows, maybe even a cure.

Until then, remember you are not alone and we WILL fight this Beast together.
Title: Re: How does CH effect your life?
Post by shaumar on Jan 24th, 2004, 9:07pm
Don't you sound like shit!!!!!Take what they give you, Oh yeah, I can sound like the best advise but I don't have them my husband does, hang in there, it totally sucks, very new to the site but more than willing to talk to another, remember don't talk shit. ya wanna talk we're at shaumar@rogers.com


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