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        New Message Board Archives >> Oct-Dec 2003 >> Clusters mess up my life
        
(Message started by: painvill on Oct 2nd, 2003, 6:51pm)
Title: Clusters mess up my life
Post by painvill on Oct 2nd, 2003, 6:51pm
:'( I am so sad I am new hi everyone . I had one today it was horrible I nearly pulled out my hair because of it .
Title: Re: Clusters mess up my life
Post by Ree on Oct 2nd, 2003, 7:07pm
I'm glad you found your way over to this board.  The other board is for supporters of Cluster headaches and this side is for everyone here and most Sufferers post here... Welcome and Good Luck Painvill

Everyone please note the two posts from "I found this on the supporters board" by me are from this same sufferer...
Title: Re: Clusters mess up my life
Post by painvill on Oct 2nd, 2003, 7:09pm
Thank you sooo much 8)
Title: Re: Clusters mess up my life
Post by jonny on Oct 2nd, 2003, 7:09pm

on 10/02/03 at 18:51:31, painvill wrote:
:'( I am so sad I am new hi everyone . I had one today it was horrible I nearly pulled out my hair because of it .


Gee, must of been horrific with all that detail

....................................jonny
Title: Re: Clusters mess up my life
Post by painvill on Oct 2nd, 2003, 7:11pm
:-[ It is terrible but if you guys need someone to talk to I will talk. I just had them recently I have to go to the docter . I have to get some medicen and stuff to take this pain away cause it is horrible belive me . I hate this pain. Someone just take it all away.. I had about three in one day today .
Title: Re: Clusters mess up my life
Post by BarbaraD on Oct 2nd, 2003, 7:20pm
I'm glad you found us here and welcome. I just got thru posting to Ree's post about you. We're here for you sweetie and WE understand what you're going through. We're all in the same boat.

What meds are you on? Have you seen a neuro yet? Have you had an MRI?

Right now I'm getting hit two or three times a day so I DO know how you feel, but this isn't my First time around so I know what to expect. On the left is a world of information on CH. READ READ READ and when you go to the doc, take information with you. Don't be afraid to ask questions and make suggestions on your treatment. We all react differently to meds.

Imitrex is helping most sufferers to get rid of the pain quickly. O2 is a lifesaver for a lot of us. Black coffee will sometimes ward them off if you get to them as soon as they start. There are lots of things that help a lot of us, but nothing cures them. We learn to cope.

Stay around and ask questions. We're here for you.

Hugs BD
Title: Re: Clusters mess up my life
Post by jonny on Oct 2nd, 2003, 7:27pm
Painvill,

How long have you had Ch?

Are you chronic or episodic?

What meds are you on or have you tried?

......................................jonny
Title: Re: Clusters mess up my life
Post by painvill on Oct 2nd, 2003, 7:27pm
:oI didn't know there were others like me and I didn't know that younger kids suffered as well that is terrible. I know the pain I take regular medicens but I need to go to the docter. Wow , I didn't know they would get worse they seem like they are getting worse to me . :) :(
Title: Re: Clusters mess up my life
Post by painvill on Oct 2nd, 2003, 7:33pm
episodic...
I had started these recently haven't had them long . I am not under any sort of stress so I know they can't be regular heaches. I took the quiz and I pass as a cluster headache person. I mean mine are so bad when I have them I bang my head on the bed room wall and cry and nearly scream , in pain that is how bad it hurts . I dont have them all the time thank god. But I feel they might get that way , I should go to the docter I guess and make sure I can get a scan are something done for my brain , and see were the headaches are accuring it mabey that they can fix it . I mean I had a accident 6 years ago and hit my head it was a car accident . I also had spine and neck injurys. I can no longer deal with these pains it is too much . I hope that I dont have them often. I couldn't take it
Title: Re: Clusters mess up my life
Post by grumpett on Oct 2nd, 2003, 9:53pm
DO YOU MIND IF i ASK YOU HOW OLD YOU ARE?

JUST CURIOUS! BECAUSE YOU SAY YOU HAVEN'T HAD THEM FOR VERY LONG.
Title: Re: Clusters mess up my life
Post by painvill on Oct 2nd, 2003, 9:54pm
28 years old.....!!! :)
Title: Re: Clusters mess up my life
Post by grumpett on Oct 2nd, 2003, 10:12pm
ANY REASON WHY YOU HAVEN'T BEEN TO THE DR. YET?
Title: Re: Clusters mess up my life
Post by Hound_Dogg on Oct 3rd, 2003, 5:55am
Get to a Doctor, Painvill...Clusters are not life threatening, per se...(Although, it can & has driven some people to take their life). But you need to make sure of what it is.

You want to first, find out if their Clusters & if they are...get the right meds. Imitrex injectable or inhaler seems to work great along with O2 in a NON REBREATHER mask. Also, some kind of preventative like Verapamil. Even if their not...at least you will have an idea of how to fight this pain.

You want to make sure what it is. Only through a proper diagnosis can you begin to fight it.

Jim
Title: Re: Clusters mess up my life
Post by Melissa on Oct 3rd, 2003, 6:39am

on 10/03/03 at 05:55:46, Hound_Dogg wrote:
Imitrex injectable or inhaler seems to work great


Just to make a polite correction it's an Imitrex nasal spray or nasal inhaler.

:)mel
Title: Re: Clusters mess up my life
Post by Miss_Deleny on Oct 3rd, 2003, 7:06am
Sorry you are in such pain, Painvill but you have found a great place to be.

Please make sure you go to the doctors and get a thorough check up WITH a CAT scan AND a MRI just to rule out others problems. I have seen others come here just "knowing" they had CH (took the test and all) to only find out when they had a MRI, that it wasnt CH after all and what they did have was curable. CH is not curable, YET! It can be somewhat controlled with the proper med combo's though.

Also, like was posted before me, go to the links on the left and read, read, read and read some more! After seeing the doctor and if he says what you have is indeed CH .. print out as much information that you can from those links and get on preventives and abortives! It may take some time to find the right combination of meds that will work for you, but in time you will find them.

Keep us posted on how you are doing.
Wishing you PFDaN's,
~April~
Title: Re: Clusters mess up my life
Post by UnsolvedEquation on Oct 3rd, 2003, 7:27am
Mellisa wrote
Quote:
Just to make a polite correction it's an Imitrex nasal spray or nasal inhaler.

True, it does come in a nasal sray or "nasal inhaler" but they also come as an injection which works much faster. Imitrex injections is the only form of Imitrex that works for me.
Title: Re: Clusters mess up my life
Post by juvy on Oct 3rd, 2003, 7:28am
Hey painvill,

Welcome to the group.  I'm sorry you have to be here but it's a wonderful place to be.

First thing, of course is got to you doctor and see a neurologist.  Sometimes it takes a lot of shouting to get them to hear you but don't let them blow you off.

Second thing-Ice seems to help some of us.  Next time you get an attack try an ice pack and eating some ice cubes as well.  For me it takes the edge off a little bit.

I wish you pain free days soon. Let us know how you're doing.

Cheers,
Juvy
Title: Re: Clusters mess up my life
Post by Charlie on Oct 3rd, 2003, 2:27pm
Welcome aboard and as they say, read and don't be afraid to ask us if you need more info. You've found a place where everyone knows what this horror can do and are here to help.

We can offer some good ideas about coping with CH and point you to some possible drugs. It is important to see a MD to rule out other things. Some MDs don't know a lot about CH though. You can direct them here. Don't worry about neurological testing. It's painless but boring. Nothing at all like B Movie stuff.  

Here are two, I hope helpful, links:

The first is to a description of this disorder that does a wonderful job explaining to families, friends and employers what cluster headaches are and that they have little to do with what is thought of as a “headache.” The second is to a technique learned from a neurologist that works well for me and others.  

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

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

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

Charlie
Title: Re: Clusters mess up my life
Post by stuey on Oct 3rd, 2003, 2:43pm
Painvill I am sorry that you are in pain and please take the advice of those before me.  It would definitely be more helpful if you were more specific about your headaches.  It's hard to tell from your posts exactly what's been happening to you so if you could possibly try to tell a little more about them.
Title: Re: Clusters mess up my life
Post by tsayswhy on Oct 3rd, 2003, 9:48pm
Welcome painvil you need to see a doctor and find out just what this is for sure!

I feel your pain its a pretty scary thing but keep posting and let us know how you are doing.


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