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        New Message Board Archives >> 2003 Posts >> Finally! People who know how I feel!
        
(Message started by: Marianne on May 8^th, 2003, 12:49am)

Title: Finally! People who know how I feel!
Post by Marianne on May 8^th, 2003, 12:49am

As I sit here and read the messages from fellow painsters I feel like crying. Of course I won't allow myself to do so as it'll start off a tornadeo cluster and I'm not due for a few more hours.
I've been getting these for approx. 5 years. I've always been a headachey person but nothing horrible until that day...
I'll never forget that moment though I would give anything to be able to! I was sitting in my study minding my own business when I felt kind of a twitchy feeling in my jaw and then it felt like fire ants were inside of the bones of my jaw. Within minutes I was on the floor squeezing my head with both hands rocking back and forth. I truly thought that I was having a STROKE OR AT VERY LEAST A BRAIN TUMOR. tHE FIRST SERIES LASTEST FOR MAYBE A MONTH ON AND OFF. I WONDERED IF I WASN'T LOSING MY MIND AS I'D NEVER HEARD OF ANYTHING SUCH AS THIS BEFORE. I WAS LIVING IN JAPAN AT THE TIME AND THE DOCTORS WERE OF LITTLE TO NO HELP WITH THE EXCEPTION OF MASSAGE I JUST ATE TYLENOL ET ALL LIKE CANDY AND PRAYED FOR DEATH. I RECALL BEGGING MY HUSBAND TO HIT ME IN THE JAW TO KNOCK ME OUT...AND I TRULY MEANT IT AT THE TIME. ANYTHING TO ESCAPE THAT PAIN. I UNDERSTAND NOW HOW PEOPLE LITERALLY ARE DRIVING INSANE FROM PAIN. LUCKILY MY DEAR HUSBAND DIDN'T HIT ME. IN FACT HE WAS MY SAVING GRACE IN JAPAN AS THE ONLY THING THAT BROUGHT ME ANY SENSE OF RELIEF AS HIM RUBBING MY NECK AND SQUEEZING MY HEAD WHILE 'TALKING ME DOWN' UNTIL I WOULD FALL INTO A STUPOR OF SLEEP.
I HAVE NOT HAD AN ATTACK FOR OVER A YEAR UNTIL THIS WEEK. i ENDED UP IN THE EMERGENCY ROOM AND THANK gOD THEY WERE FMILIAR WITH CLUSTER HEADACHES. THE DOCTOR SUGGESTED THAT I MIGHT BE HAVING CLUSTERS AND NOT MIGRAINS. WHEN I GOT ON THE NET AND READ UP I FOUND THT HE IS ABSOLUTELY CORRECT. I'VE JOKED THAT THESE HEADACHES MAKE ONE LONG FOR THE GOOD OLE DAYS OF HAVING MIGRAINS. OF COURSE PEOPLE TRY AND UNDERSTAND HOW SHOCKING AND LIFE ALTERING THIS PAIN IS BUT AS IS TRUE WITH SO MANY THINGS I GUESS THAT UNLESS A PERSON HAS EXPERIENCED THIS PAIN FOR THEMSELVES THERE IS NO POSSIBLE UNDERSTANDING OF IT.
IT IS SO HARD THOUGH FOR ME TO FEEL LIKE I AM LETTING PEOPLE DOWN OR THAT MAYBE THEY THINK I AM BEING A BABY ABOUT THESE HEADACHES. I FEEL GUILTY AND I FEEL LIKE MY BRAIN IS EXPLODING AND THEN IT BEGINS ALL OVER AGAIN.
THANKS FOR BEING THERE THOUGH MY HEARTBREAKS THAT THERE ARE SO MANY OF US I AM HAPPY TO KNOW I AM NOT ALONE ANYMORE WITH THIS TERRORIZING WHIRLWIND.
KEEP FIGHTING YA'LL! MARIANNE ;D

Title: Re: Finally! People who know how I feel!
Post by brain_cramps on May 8^th, 2003, 1:00am

Marianne

Sad to hear you're having a rough stretch. Hang in there. You're in GOOD company now. Starting with the buttons on the left: READ, READ, READ... then read some more!

don't be afraid to ask any questions

PFDAN,
grant 8)

Title: Re: Finally! People who know how I feel!
Post by Not4Hire on May 8^th, 2003, 1:04am

well hell, marianne...yer gonna do just fine here, with an intro like that.... as the line goes: sorry yer here, glad ya found it...

...there's lot's of good info here.... and ways to cope with this MOFO.... do a lot of research, if you haven't already... tell us what meds you are on (if any) and the clusterfolk will be glad to answer *informed* questions...OK, dumb ones too.....

....just turn down the volume... ;D (check yer CAPS key) ... it's late and charlie's sleepin'...... ya don' wanna wake charlie.....trust me..... ;)

...and if ya don't know about this:
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
...give it a try......
best regards and welcome......Steve(N4H)

Title: Re: Finally! People who know how I feel!
Post by Marianne on May 8^th, 2003, 2:36am

Thanks, ya'l are just great! Oh, sorry about that caps spell it was an accident! I truly appreciate your kind words and I'm reading and reading. I'll post tomorrow with the 'big list' of new meds I'm on. Thus far they are great...at putting me in a coma which okay, by compare aint all that bad, however, not terribly condusive to a life of well, living? shall we all join hands now and sing 'we shall overcome'? Say good night Irene.
good night to you all and may we all sleep peacefully with a whisper of pain..................
marianne

Title: Re: Finally! People who know how I feel!
Post by Charlie on May 8^th, 2003, 6:35am

Welcome and you're right, yer not alone with this horror. We know exactly what you feel. Like you, I was convinced I was heading for the last roundup with a stroke or a tumor. I was lucky though in that when I described it to my neurologist, he came up with a CH diagnosis in less than two minutes, and this was 30 years ago. He had a little flyer on his desk with a drawing of someone having an attack. He didn't even do tests. He said without question, I was a clusterhead. Here it is 30 years later and they've been gone for 12 years as of April. It can happen to you as well.

Before I sign off, here is a link from our old friend, Simon Bower. He runs the UK CH site and has a letter describing CH to show to others and it's the best we have. It's aimed at families, friends and employers. He encourages coying it and it's a good idea. Here is the link:

http://www.ouch-uk.org/ch/note_colleagues.cfm

Here is old Dr. Wright's technique. It saved my sanity:

Dr. Wright's Circulatory Technique

This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.

When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.

This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.

This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.

When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck - Charlie Strand

Title: Re: Finally! People who know how I feel!
Post by Roghfish on May 8^th, 2003, 7:31am

Well I will say you have found the right place, don't make the mistake I made, I found this sight a few years back when I was having a bad cycle, then I didn't even want to think about them so when I was not in cycle I stayed a way. :-/ :-/Bad move I have been in cycle now since the last week of Jan started on the right side, then got about a 2 week break and they moved to the left side. :o :o never in 20 years have I had the happen. I made,Then talking with my eye Dr. in mid April she told me about a Neuro Dr that worked only with Headaches wow finnilly a Dr. that understands them. Now with this sight and Meds. I have been PF for 138 hr ( might be time to start counting by days now) and if the beast shows up I have several ways to fight him off.
Its not great to see you here but hey these people will help :) :)
Roger

Title: Re: Finally! People who know how I feel!
Post by Mark C on May 8^th, 2003, 9:03am

Welcome to the board,
I see you woke up Charlie! ;D Just kidding. He is like the rest of us I think...not much on sleeping. I am sorry about the head blasters...I know it all too well. Stick around...this is home for us Clusterheads.

Here (http://www.headaches.org/professional/educationresources/PDF/headache_diary.pdf) is a headache diary to help see patterns in your cycles. I hope it helps.

PFDAN's
Mark

Title: Re: Finally! People who know how I feel!
Post by cootie on May 8^th, 2003, 9:05am

Hi Marianne and hi to you too Roghfish...not sure I said hi yet to you both....here's hopein you get the info you need, advice and help. Howdy-do-ya-do HONK Pam ;)

Title: Re: Finally! People who know how I feel!
Post by Leesa on May 8^th, 2003, 9:08am

Marianne, your in GREAT hands now, with the best damn family in the world. Sorry your here but "WELCOME HOME" to clusterville. We fight and argue like any family does but we kick butt when it comes to another family member hurting, needing help and support :) Welcome to the family. ;D

Title: Re: Finally! People who know how I feel!
Post by oringkid on May 8^th, 2003, 2:31pm

Welcome Marianne! You have found the greatest place anywhere for support and info on CH.

I lived in Japan for a while! I lived in Atsugi. I remember getting a cycle there too. That was before I was diagnosed too. I've had these bad boy's for 30 years. Been going about 2 years between cycles for the past few. Pf now, have been since end of April '02, so I will send you some pf time!

Stick around, we're crazy, but all are good, caring people who KNOW what you're going through.

Sherry

Title: Re: Finally! People who know how I feel!
Post by cathy on May 8^th, 2003, 2:54pm

Hi Marianne

Welcome to the family, you don't have to be mad to be here but it helps!!

WELCOME...!!

Charlie....

WAKE UP!!!!!! ;D

Cathy

Title: Re: Finally! People who know how I feel!
Post by Drk^Angel on May 8^th, 2003, 10:34pm

Welcome to the beast! Sorry that the beast is drillin' a giant hole in your cranium with a rusty eggbeater. Welcome to the family! Good luck!

PFDAN.................................... Drk^Angel

Title: Re: Finally! People who know how I feel!
Post by Callico_Kid on May 8^th, 2003, 11:50pm

Hi Marianne,

Glad you found us and glad also that you found a Dr that knew something about CH and could at least give you something to go on. You will find no better friends or more caring people than you find here. Read all yo can and ask questions. Most of all, don't give up hope. These will end!

jc

Title: Re: Finally! People who know how I feel!
Post by BillyJ. on May 9^th, 2003, 12:53am

Oh come on it's JUST a headache!!

Just kidding!!Everyone here understands exactly what
your going through.Sorry you had to find us but glad you
you did.It realy does help just to know that you're not
alone.You will find more info here than almost any doctor
will ever have,along with the best bunch of people you
could ever want to meet.WELCOME aboard! Oh and if youd like to chat check out this site-http://www.headachesupportgroups.com/echat44/public/index.html
Wishing you pain free times soon,
Billy
p.s.Charlie you said "It saved my sanity" well that's
debatable.LOL :)