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        New Message Board Archives >> Jul-Sep 2003 >> help need to meet others
        
(Message started by: cleolane on Jul 5^th, 2003, 10:18am)

Title: help need to meet others
Post by cleolane on Jul 5^th, 2003, 10:18am

Hello, My name is Paul, Im 29 in August 03 and I live in Bearwood, Smethwick, B`ham.
Here is my story.
I’ve been suffering with CCH since around the age of 22yrs. I would complain to the doctor of abdominal painful migraine, and ask why I would keep on getting them every single day, week after week, month after month. The doctor would say different things like Blocked sinuses, Infection of the sinuses, diet, the whether, and so on. I feel that I wasn’t being taken seriously when I would tell the doctor and other people, about just how painful my head was hurting when I was having a migraine. When I was having a migraine I would get a big lump show on the front right lobe of my forehead. Eventually at the age of 28yrs of constant miserable intolerable pain, the doctor sent me to see a Neurologist who diagnosed my condition as CCH. And as I already know, he also confirmed no other over the counter painkillers would be able to touch the pain as I needed something a lot stronger,(Sumatriptain), which I now take in the injection form, although I also take the tablets as well sometimes. I find the injection most effective and cures my migraine in about 6 minutes.
Before I was diagnosed, I swear if I hadn’t got offspring to be there for, I would have committed suicide, as I just cannot stand being in that kind of agonizing pain.

What’s your story?
Do you know of a support group where people with CCH can go and talk to one another?
Would you be interested in meeting up with me?

Paul.!!!

Title: Re: help need to meet others
Post by catlind on Jul 5^th, 2003, 10:57am

Paul, yoy have found that support group right here. Do me a favour though, don't call them migraines ;)

The people here suffer from Cluster headaches in both chronic and episodic form. Read, read and read some more, you will find a wealth of information about your condition in these pages.

Ask questions, answer questions, and get an oar and start rowing the boat towards a cure. Welcome to the family and sorry you have to be here.

You can also look up the OUCH UK site and the headache support group chat. These are the links:

http://www.headachesupportgroups.com and click on the chat links.

and http://www.clusterheadaches.org.uk/
(the link is not working right now but will be fixed soon)

Cat

Title: Re: help need to meet others
Post by Jayne on Jul 5^th, 2003, 11:07am

I hate to have to welcome you to our family Paul! I don't wish this crap on my enemies.
This is a great place to find and you will never meet a better bunch of people.
Have you ever tried VERAPAMIL..??
This is the drug of choice for most of us.
Ask your doctor about it. The dosage depends on you really. Some people are on a dose as low as 180mg per day, and some are on a dose as high as 960mg per day. It is a preventative drug that you have to take everyday..headache or not. It can take up to a week and a half to build up into your system before it starts working. Some people have to take lithium as well as the verapamil to find releif.
I hope this helps you.
Good luck in fighting what we call the "beast" Paul.
Jayne

Title: Re: help need to meet others
Post by cbolony on Jul 5^th, 2003, 11:22am

cleolane Welcome Aboard and i agree what catlind
and Jayne said.What i take as prevent is verapamil 240 mgs 2x aday combo with depakote 500mgs 3x aday and abort with imitrex imjections

Title: Re: help need to meet others
Post by sueellen83 on Jul 5^th, 2003, 12:56pm

Hey Paul,

Welcome. Sorry you had to come looking for us.

Every one here understands what you are going through and are here to help.

This is a great place!!!! ;D

Title: Re: help need to meet others
Post by Locomotive_Skull on Jul 5^th, 2003, 1:51pm

Hi Paul. I am rather new to this site, but not to our little visitor ;). If any of you ( you too Paul) ever just need to talk to someone about the beast or about just plain keepin' on, here is my number=
(573) 406-0498.
Ask for Mike ;D

Title: Re: help need to meet others
Post by Wendy the Brit on Jul 5^th, 2003, 9:42pm

Paul

The title of your post was "Help Need to meet others", if I have got it right you live in Birmingham ENGLAND . What a bloody shame, there was a huge CH conference in Birmingham two weeks ago. Lots of us there, and we were put together with people who lived near us.

Don't worry though, have you been to the OUCH UK site.?? There are other sufferers who live in and near Birmingham, just go to the "Where we live" section and you will find all their names and where they are.

Cathy and I are frequent visitors on this and the UK site, so get in touch if you need to talk

Wendy the Brit (live on the borders of Bucks. Herts and Beds)

Title: Re: help need to meet others
Post by kim on Jul 5^th, 2003, 11:21pm

Hey Paul,
Lots of good guidance above. Welcome and good luck :)

Title: Re: help need to meet others
Post by Charlie on Jul 6^th, 2003, 12:54am

Welcome aboard. This can be a great place to rant, find help, or just talk to others with this horror. Lots of good info and silliness here. You'll find the UK site is terrific too.

In the meantime, give this little thing a try:

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