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        New Message Board Archives >> Jan-Mar 2004 >> my first message, i am crying
        
(Message started by: bubu on Jan 30^th, 2004, 7:23am)

Title: my first message, i am crying
Post by bubu on Jan 30^th, 2004, 7:23am

i just took the survey and saw that mothing helps, i am crying, ..
i am 47 and had classic clusters from 14 to 40 and have been FREE for 7b years and yestreday, they starded again, just like before but worse.
its been 20 years since i lest saw a doctor, dr raskin at san fran uni hospital, who told me there is no help for you, now 20 years later there is still no help, but this is new, this web site, it makes me feel better, i have never mey anyone who shared my illness, if i ever do i will hug them so hard ill pop there pain out of their temples!
i am living in th4e middle of nowhere poland teaching english and need some support, i havent had time to check put this web site but will do it tomorrow, i have to go teach now.
hugs
bubu

Title: HRe: my first message, i am crying
Post by Filbert on Jan 30^th, 2004, 7:34am

Hi Bubu
Welcome to the board but very sorry you have CH. Iv,e only just joined the board too . There are things that can help most people these days so don,t despair! Read around the site for info. Hope you become painfree soon!!!
Filbert

Title: Re: my first message, i am crying
Post by Kevin_M on Jan 30^th, 2004, 7:55am

Well, Poland has doctors and neuros. Make an appointment. Get a preventative, which may take time to work and of course an abortive, soon. Make time.
I taught for a while and certainly could not while in cycle without medication. Make sure you stress to any dr you talk to the relevance of KEEPING YOUR JOB. The immediacy of relief somehow is very important.
Try to catch them early on before they can overtake you and incapacitate you on the job. Best to you and write here if you need advice or any type of help. Someone, and many will have answers for you. Write back soon.

Kevin M

Title: Re: my first message, i am crying
Post by thomas on Jan 30^th, 2004, 8:05am

Welcome aboard, there are lots of things that can help. Read the stuff on the left and the meds board, you can find something to help (sadly no cure).... but something that can help ease the pain.

Title: Re: my first message, i am crying
Post by RevDeFord on Jan 30^th, 2004, 8:15am

Oxygen, Oxygen, Oxygen

Title: Re: my first message, i am crying
Post by thomas on Jan 30^th, 2004, 8:39am

Check your pm's bro.

Title: Re: my first message, i am crying
Post by Prense on Jan 30^th, 2004, 10:04am

on 01/30/04 at 08:05:19, thomas wrote:

Welcome aboard, there are lots of things that can help. Read the stuff on the left and the meds board, you can find something to help (sadly no cure).... but something that can help ease the pain.

Well said Thomas!

Welcome aboard Bubu...

Chris

Title: Re: my first message, i am crying
Post by captdshea on Jan 30^th, 2004, 10:27am

Welcome! My story is alot like yours, I was pain free for 6years.

David

Title: Re: my first message, i am crying
Post by AlienSpaceGuy on Jan 30^th, 2004, 11:29am

Hi bubu,

I know of one Pawel Labeda who runs a clusterheadache page in Polish:

http://klio.umcs.lublin.pl/users/drumil/pio/glowa.html

I have no idea what's written there (;;D), but maybe you can get some help there for a clusterhead stranded in Poland.

PFDANs
ASG

Title: Re: my first message, i am crying
Post by BlueMeanie on Jan 30^th, 2004, 12:04pm

Sorry to hear the Beast is back Bubu. Read all the info you can so when you see the doc you will know what your possibilities are in dealing with the situation. There ARE meds out there that WILL work for you. I taught vocational education for 5 years with these Clusters. I know how you're feeling trying to deal with it. Get some O2 if you can and keep it at work. There ARE lots of abortives out there. Find a different doc. that knows about Clusters.

PFDAN to you.

Title: Re: my first message, i am crying
Post by Jayne on Jan 30^th, 2004, 12:10pm

No you should not despair.. The drug VERAPAMIL does wonders for most clusterheads. It all depends on your dosage of the drug too, some people start off on a dose that is way too low and give up..if it doesn't work at first after about 10 days of taking it...RAISE the dose.
Don't let the doctor tell you there is no hope...go find a new doctor.
Keep close to us we will guide you

Title: Re: my first message, i am crying
Post by TxBasslady on Jan 30^th, 2004, 12:46pm

Welcome to the board, Bubu.

Read all you can on all the links located on the left of this page.

The good thing is that now you know you are not alone in this. You will find great support and alot of new friends here.

PF vibes,

Jean

Title: Re: my first message, i am crying
Post by Jackie on Jan 30^th, 2004, 2:25pm

Just wanted to say welcome, bubu.
You've received good advice from the above post. This is a great group....always ready to help and support.

Good luck,
Jacks 8)

Title: Re: my first message, i am crying
Post by Edna on Jan 31^st, 2004, 12:37am

buba, them tears we know are of joy!!!

read a lot around here and you'll get loads of good info

Stick around with us, and let us know how you progress.

Wishing you much success in finding a treatment that works.........they are out there for you.

and here's the best hug headed your way,
it's ok to hug us back too..... :)

pf wishes,
EDNA

Title: Re: my first message, i am crying
Post by Charlie on Jan 31^st, 2004, 2:32am

Glad you found us and if you stick around you'll find lots of good ideas to help deal with this horror. Here is a link to a technique that helped me:

http://www.netsync.net/users/charlies/

Good luck and let us know how you're doing.

Charlie

Title: Re: my first message, i am crying
Post by Callico_Kid on Jan 31^st, 2004, 2:45am

I have to echo the Rev. " Oxygen Oxygen Oxygen."

Then I would echo Jayne "Verapamil"

The only thing I would add is Lithium.

It's nice having everybody else on this board. They give all th good advice, I just repeat it and appear intelligent. ;;D

Don't give up hope at all. We have seen a lot being done in the last couple of years.

Jerry

Title: Re: my first message, i am crying
Post by kim on Jan 31^st, 2004, 12:01pm

Hey Bubu,

So happy you landed here. Never again will you be alone.*** I wonder how many of us did NOT cry when we landed in clusterville.........such a fantastic feeling - FINALLY!!!! :)

Sorry to hear that the clusters are back but now you have REAL artillery. Both in emotional support and a wealth of knowledge and advice to draw from.

Sending you a smile and well wishes!