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(Message started by: Disposable_Hero on Jun 12^th, 2003, 5:46pm)

Title: hello
Post by Disposable_Hero on Jun 12^th, 2003, 5:46pm

Hello

About an hour ago i found this website,and finally i can talk to people who have the same problem as me.

My family tries to understand it,my mum is really concerned about me (which hurts me allot to see her suffer over this too).
Although my family tries to understand it I do sometimes see the way they look at me when i try to talk about it.(I get the feeling that they have a hard time believing it all)

I had my first headache which felt different was about 7 or 8 years ago,and its been there eversince
Always on the right side and trying to push out my eye and expand my skull all the way down to my neck and sometimes even schoulders.
The only thing that is different (from what i read on this forum) is that all day 24 hours long i an feel my headache lurking in there getting ready to attack me.(Don't really know if thats normal)
If i bump my head to something at work or home it breaks through if i'm not fast enough with the pills,but it takes revenge at night when i'm asleep.

The doctors are trying to figure it all out,but i sometimes get the feeling i'm not taken seriously.

Anyway this is me and a small introduction (no need to post my life's story yet ;) )

Title: Re: hello
Post by cathy on Jun 12^th, 2003, 6:28pm

Disposable_Hero, soooo are you saying 7 - 8 years and you've still not being officially diagnosed...?? print off the info available here and give it to the doctors...take the test to left and let us know how you get on....are you headaches in cycles or all the time...

Sorry to hear your in any kind of pain... :-/

Cathy

Title: Re: hello
Post by badfly on Jun 12^th, 2003, 6:40pm

Welcome Disposable

Docter NEED to take you seriously! If your doctor wont, find one that will and tell the current one to take a hike. I am sorry that it is because of the beast that you found this site, but happy for you that cos now you can start to get the info that you have been lacking.
Seriously though, theres nothing worse then a quack who wont listen. When you find a doctor willing to listen you will see the improvement in your life quite quickly.

Welcome to the board! PFDAN to you!

Title: Re: hello
Post by Big_Dan on Jun 12^th, 2003, 6:47pm

... grab a chair and crack a beer, bud...

... glad you found the site, sorry you had too...

-Big Dan

Title: Re: hello
Post by Live4Fun on Jun 12^th, 2003, 6:49pm

Welcome aboard. I hope someone diagnoses you soon and if they are truly CHs, that they get you on the meds you need ASAP. Believe me, the right Cocktail can make all the difference.

Here's hoping you get some relief soon!

Bryan

Title: Re: hello
Post by Miklos on Jun 12^th, 2003, 8:28pm

Things do not sound too good. Whe don't you try answering the Cluster Quiz at the left (4th one down). If you match up, print it off and take it to your doctor. It is an easy place to start.

Also, I believe there is a Dutch version of this board available. Perhaps someone more knowledgeable than I can direct you to the right URL.
Good Luck. You will survive.

Title: Re: hello
Post by Edna on Jun 12^th, 2003, 8:37pm

sorry you had the need to find us, but stick around....there's lots here that can help you out if you take the time to become educated enough.

hoping your pf moments in between continue to grow longer and longer............keep us posted about your progress.......WE CARE!!

EDNA

Title: Re: hello
Post by katethecelt on Jun 12^th, 2003, 11:01pm

Welocme!

I'm very sorry to hear you are suffering. CH pain is like no other and makes it hard for others to understand.

Let us know what meds you are taking & home treatments you use. There is a great deal of info on these pages - keep reading posts and look for the links people have suggested.

Wishing you Pain Free days & nights,
Kate

Title: Re: hello
Post by Charlie on Jun 12^th, 2003, 11:30pm

Welcome aboard and what you describe sounds like CH. It would be good to have it diagnosed as well. Almost all of us have been awakened after an hour or so and through the night with an attack. You aren't alone. What follows is something to look at and copy. It's Simon's letter which is our best description of CH for families and employers It's worth a look.

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

The following is a technique that I and some of us have found very helpful:

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: hello
Post by Disposable_Hero on Jun 13^th, 2003, 3:15am

Thank you all for the warm welcome.

This thing has totally affected my life.
On top of it all,in 1999 i started to get cross eyed sometimes the duration of is was about three months.
And as suddenly it had appeared it was gone too,this went on about 6 months.

In august 2000 (girlfriend at the end of her pregnancy (SP) ) i had a small spot in the centre of my right eye.
At first i thought i had (don't know the correct English term) a welders eye,and I was sure to to have some trouble from that in the evening but no irritation that night.
The spot grew,called in sick and before i knew it i was for three weeks in a hospital bed far away from home.
95% vision lost forever.
That period they filled me with Prednisone 1000 mg a day for 3 days,i was at the cieling my emotions flying arround like crazy.
They did allot of tests angiograms to see if al vessels were allowing blood to flow through MRI scans lots of them,and especially with all that prednisone i was going crazy nowhere to go and nowhere to hide.
Had an operation 12hours long they lifted part of my skull to get in behind my eye make some more room in the back of the cone and get a tissue sample of the so called infection in my optic nerve all they found was wild flesh growing from the inside out.
But no headaches 3 weeks long that was the only upside to this story.

After that the real war began,i still had to fix the house we both moved in and with a baby upcomming you everything to right.
In october my daughter arrived intoo my life what a glorious day.
But soon after i got off the prednisone well only a small dosage,it all came back .

At first we all thought it was from my eye because there is only 5% vision and they said that my brain had a hard time dealing with that,they send me on my way with new medication morphine stickers, i needed to change them every three days.
At first i had a small dosage 25mg but still the headaches were there.
Then 50 mg still headaches on to 75mg then.
Istarted to get sick very sick everytime i put a new sticker on my belly the first to days i was vomitting everything i had inside out in the toilet the third day was ok but the next day it started all over.
This went on for 4 weeks I was getting worse and worse everyday.
And because of all the vomitting you guessed it more headaches.
I went back to the Neurologist and he said go back to fifty mg to see if your sickness is getting less,it didn't.
went back to 25 still sick and more headaches.

I got another medicine Indomecatine 50mg and the neurologist sugested i'd take a joint on occasion.
On occasion became every day (only in the evening)

My relationship with my girlfriend went to ruins and we sepperated Januari last year.

I'm unable to do any kind of manual labour,my life is shot to Hell
24 Hours a day headache with attacks,in general they come to me at night when i'm asleep first shifting position then i have to get out get my medication and concentrate on my feet.
Thank you Charlie for your tip but i already use it ;) without any doctor suggestion.
At first i figured if i had more pain somewhere else on my boby i would forget my head and concentrate on there.
But hurting myself more is no option (anymore)

Doctors were unable/unwilling to help so i said to Hell with them i'll do it on my own.

Yesterday (after +/-on year) I went back to my doctor and asked for new medication and a new appointment with the neurologist.

The last year was hard on me and i should have never abbandoned seeing the doctors,but i had bigger problems like not getting kicked out of my house and being able to see my daughter.
Started finding jobs one month there 2 there only to find out i can't do it anymore,employers need people they can rely on being there on time and everyday,but my headaches makes it impossible.

The new medication is 50mg sumatriptan haven't used it yet asi still have my old stuff to run out,and to be honest i'm afraid to get sick again because of the new pills.

It's Hell. I wouldn't even wish my worst enemy this sh*t

Richard van Kempen

P.S. forgot to introduce myself properly in my first post ;)

Title: Re: hello
Post by catlind on Jun 13^th, 2003, 6:12am

Richard,

It sounds like you've been travelling a very long and difficult road. I'm no doctor so I can't tell you one way or the other if you have CH. The advice given above is good advice.

Do not be afraid to take the sumatriptan! It won't make you sick like the pain patch, and has been a great medication for many many people here. Most folks use it in injection form, or nasal spray, so if the pills don't work, don't give up, try the injections.

Also, have you considered medications to work in preventing? Such as verapamil or lithium (or combining them) Do you have any O2? Oxygen is the nectar of the gods for alot of folks here.

Hope you can find yourself pain free soon.

Cat

Title: Re: hello
Post by gene on Jun 13^th, 2003, 6:23am

Imitrx injections!!! for me 120 secons usually ch gone... till the next one comes.
Gene e=mail me if you have problems/ can send you a surprise if necessary
Gene

Title: Re: hello
Post by Disposable_Hero on Jun 13^th, 2003, 6:53am

Catlind, I'm gonna let them doctor on me again ::)
If this continues like this will i ever be able to have a normal life again?

I'm glad i found people where i can talk with :D

Richard

Title: Re: hello
Post by catlind on Jun 13^th, 2003, 8:02am

I wish I could tell you that a normal life would be possible. You'd first have to define normal though LOL

You CAN however have a good life, with quality of life. This site and the people here can help you to find a combination of meds that will help you. Once you find that combo, you will find that your life is good again :)

Wishing you all the best

Cat