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        New Message Board Archives >> 2003 Posts >> Hello, I'm a new cluster sufferer 
        
(Message started by: James_Payne on Aug 23^rd, 2003, 4:22pm)

Title: Hello, I'm a new cluster sufferer
Post by James_Payne on Aug 23^rd, 2003, 4:22pm

Hello everybody, my name is James, i am 33 years of age and i suffer from cluster headaches :(

For many years now i have suffered from the normal headache. I say normal headache, however these headaches only ever attacked my left eye. I would usually take 2 x Ibrufen tablets and that would take it away, until say a couple of months later i would get another one.

About 3 years ago, without warning i suffered one of these pains. Again only attacking ' above ' the left eye. Tablets on this occasion did not take it away. During this attack i just wanted to shut myself away from everyone and every thing, hold my head and cry. Every 4 hours i took tablets but again no change. Eventually after what seemed like an age, the initial eye piercing pain subsided, however it left me totally drained with a constant ache around my eye. This dragged on and on, slowly bringing me down and exhausting me. I somehow managed to get through the days, having bad hours and then hours that i could just about put up with. I was never sick, but felt awful, and that constant eye pain (as if someone was inside, trying to push it out with a knife) was always there. Whenever i lowered my head it hurt, and my life was sheer hell.

Eventually i payed £100 to see a private consultant because i was convinced i had some kind of tumour. To my relief he diagnosed Cluster headaches. He mentioned that these pains i got that sometimes went with a tablet, sometimes didn't want to go. They attatch themselves(to me the left eye) and build up and build up. Without warning they just attack and ...well you know the rest. This episode lasted for about 6 weeks until eventually i woke up one morning and the pain had gone.

About a week ago (Sat 16th) i awoke, or should i say the Demon awoke me at about 05:00hrs. I took tablets but nothing took it away. My left eye throbbed for most of the day, and unfortunately for my wife Helen and our 2yr old daughter Charlotte, i was not much fun to be around. I have had to have the past week off work as the pain has been so bad. I don't know much about Clusters but i would say that i get immense pain about mid morning and then again early evening. Between these times i'm like a bear with a sore head, just tolerating the heavy pain in and around my eye. I'm currently taking tablets called Frovatriptan, but to be honest they dont seem to be working.

Now i don't know too much about Clusters so hopefully all you good people can help me. I get confused (which isn't difficult :)) when i read about attacks, mid-cyle etc etc. All i know is that i've had this again about 2 years later, and about twice a day i get terrible pain for about half an hour, and in between time i have this heavy stabbing pain that comes in waves above and around the eye. The best way i describe to people where the pain is, is : when i close my eyes and i touch my left eyeball, its like prodding a fresh bruise that then makes you cry out in pain.

Thankyou to all of you who take the time to read my sorry situation. I'm a firm believer in thinking that there's always someonr worse off than you, so my situation may not be as bad as someone elses, however any information and help would be much appreciated.

Kind Regards to you all

James

Title: Re: Hello, I'm a new cluster sufferer
Post by jonny on Aug 23^rd, 2003, 4:36pm

Sorry your bricking it mate, we know your pain.

You will find help here.

........................................jonny

Title: Re: Hello, I'm a new cluster sufferer
Post by Leesa on Aug 23^rd, 2003, 4:51pm

Hiya James ;D and "Welcome to Clusterville" sorry your here but your in the right place! Read all you can on the sight and ask ?'s if we dont have the answers we can point ya in the right direction. Check out the OUCH sight and may find a Neuro near you in your area. But most all stick around here and take what ya need and leave the rest.
Welcome Home!!
Leesa ;D

PS: JOIN OUCH!!!!! JOIN OUCH!!!!!!! JOIN OUCH!!!!!!!!!

Title: Re: Hello, I'm a new cluster sufferer
Post by James_Payne on Aug 23^rd, 2003, 4:57pm

Many thanks for your quick replies and concerns.

The whole site looks as if it is very informative, and i'm sure it will help out alot.

I have already printed off a page for my wife to read. It was from a wife of a CH sufferer, and she seemed to sum up completely exactly what we have to go through. Don't get me wrong my wife understands, however the lady seemed to sum up exactly how i felt .

Regards James

Title: Re: Hello, I'm a new cluster sufferer
Post by Mark C on Aug 23^rd, 2003, 5:12pm

Welcome to the board James, grab an oar and start rowing!

PFDAN's
Mark

Title: Re: Hello, I'm a new cluster sufferer
Post by stevegeebe on Aug 23^rd, 2003, 5:26pm

Welcome James.

This place will help you in many ways.

Read and hang.

Steve G

Title: Re: Hello, I'm a new cluster sufferer
Post by Patrick_A on Aug 23^rd, 2003, 5:28pm

Welcome to CH.com, James! I too am presently in midcycle but am being treated with Prednisone and Verapamil successfully. I havent had any pain in over a week. That is one of the more popular cocktails for CH sufferers. There is help, Most can get some kind of relief.
Information here is abundant, People are caring and understanding! If ya need anything, dont hesitate to PM or Personal Message me!

PFDAN, Patrick

Title: Re: Hello, I'm a new cluster sufferer
Post by Charlie on Aug 23^rd, 2003, 5:48pm

Welcome to our little world. Be assured that we all understand exactly what this is like. Stick around and you'll find lots of good ideas on how to cope with this horror. Here are two links. The first will lead you to a letter that we recommend to copy for friends, families and employers as it does a great job explaining that these attacks have little in common with headache.

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

This last link is for a technique that worked very well for me and some others. It's worth a look too.

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

Good luck and let us know how things are going.

Charlie

Title: Re: Hello, I'm a new cluster sufferer
Post by Big_Dan on Aug 23^rd, 2003, 6:03pm

... hate that you're banging, James..

... but stick around and do some research, that's about all we've got going for us at the moment...

... oh... and grab and oar.

PFDAN's...

-Big Dan

Title: Re: Hello, I'm a new cluster sufferer
Post by paul_b on Aug 23^rd, 2003, 6:20pm

welcome aboard JP. Do the research. Good info and good support here.

Title: Re: Hello, I'm a new cluster sufferer
Post by katethecelt on Aug 23^rd, 2003, 11:41pm

Welcome James,

I'm so glad you found our family. I printed out the info from the various buttons on the right. It allowed me to read when I could & share it with my husband.

Many people just replied to a post by CryingInPain and made great suggestions. I hope you find relief soon.

Don't be shy about sending people an email or IM.

Sending many Good Vibes,
Kate

Title: Re: Hello, I'm a new cluster sufferer
Post by kim on Aug 24^th, 2003, 12:01am

welcome n well wishes***
hang tite :)

Title: Re: Hello, I'm a new cluster sufferer
Post by tsayswhy on Aug 24^th, 2003, 3:39am

welcome James:this is a great starting point. The more i read the more i understood what was happening to me. Stick around good-friends here that understand your pain. GOOD-LUCK

Title: Re: Hello, I'm a new cluster sufferer
Post by badfly on Aug 24^th, 2003, 6:03am

Welcome :-) Sorry you had to find us, but now that you have, I'm sure things will improve. Read all you can here and make your doctor give you the help you deserve. I will say just one more thing.
IMITREX

Title: Re: Hello, I'm a new cluster sufferer
Post by Peppermint on Aug 24^th, 2003, 8:45am

Welcome James, sorry you're having a tough time. Ditto all the good stuff, there's a lot of info here, starting with all the buttons to the left. What you can't find ask, there's years of experience from other ch'ers here!

If your meds are not working, maybe its time to talk to your doc again. Its great that he diagnosed you properly, sounds like you might be able to work together on some relief for you.

Good luck!
Pep

Title: Re: Hello, I'm a new cluster sufferer
Post by Hooter on Aug 24^th, 2003, 9:11am

James

Check your inbox, email should be there now

Wendy the Brit

Title: Re: Hello, I'm a new cluster sufferer
Post by Miss_Deleny on Aug 24^th, 2003, 9:47am

Instead of repeating all that has already been said, I will just say .... WELCOME!

~April~

Title: Re: Hello, I'm a new cluster sufferer
Post by OneEyeBlind on Aug 24^th, 2003, 10:08am

Welcome to the board. Imitrex and O2 (used properly) are my saviors while in cycle. There is a button to the left on the proper usage of O2. Also, look in to getting Imitrex injections (work in 5 minutes flat to kill the beast). Verapamil is a great way to end the cycle early. It's used as a preventative. Read around ... not every drug works for every person. So read, read and read. Let us know what you have tried and what does or doesn't work. We might be able to help.

Title: Re: Hello, I'm a new cluster sufferer
Post by Prense on Aug 24^th, 2003, 10:21am

Welcome aboard James!

If a treatment method isn't working, then seek out another one! It is easier said than done at times, I know. There are many different "cocktails" (med combos) that work for various folks here as preventatives. As for abortives, it is pretty much a general concencus here that O2 + imitrex (injections) is the way to go as long as no other conditions prevent you from being prescribed this. If OTC (over the counter) meds do not seem to be doing anything, I would avoid them. Get active here, and by all means, keep asking questions. I wish you well, James!

Chris

Title: Re: Hello, I'm a new cluster sufferer
Post by James_Payne on Aug 24^th, 2003, 3:20pm

on 08/24/03 at 09:11:22, Hooter wrote:

James

Check your inbox, email should be there now

Wendy the Brit

Hello Hooter (Wendy)

Please check your private messages.

Kind Regards

James