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        New Message Board Archives >> 2003 Posts >> I'm somewhat new. Got a question
        
(Message started by: Bonniegirl on Apr 7^th, 2003, 5:15pm)

Title: I'm somewhat new. Got a question
Post by Bonniegirl on Apr 7^th, 2003, 5:15pm

I've been going thru hell for the last 8 days. I wanted to die last nite. I've been sitting here crying as I read postings and advice. I'm trying the water treatment now. My question is.. is there any one thing(affirmation,mantra,thought..etc...) that you turn to when you feel like you can't take one more second? I'm embarassed to say so but I'm afraid to go thru one more nite of this. Any thoughts would be appreciated.Bonniegirl

Title: Re: I'm somewhat new. Got a question
Post by jonny on Apr 7^th, 2003, 5:27pm

Dont be embarassed Bonnie, this is the worst pain known to any living thing.

When I cant abort a CH I just keep thinking "IT WILL END" and it will feel so good when it does.

Welcome aboard my friend.

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

Title: Re: I'm somewhat new. Got a question
Post by Roxy on Apr 7^th, 2003, 5:37pm

Bonnie, I'm so sorry you are having a rough time right now. It might not feel like it at the moment, but this time will pass.

The one thing I turn to when I feel like I am being overwhelmed....this board and the clusterhead family. They are the only one's who truely undestand what this monster can do to a person. It can bring a strong person to their knees in a heartbeat, but the people here can lift you back up. We all need help at times.....we will do whatever we can to help you.

Hang on, because it will pass,
Tracey

Title: Re: I'm somewhat new. Got a question
Post by firebrix on Apr 7^th, 2003, 5:46pm

Welcome Bonniegirl.
Sorry to hear you're so sad and in pain. You need help hon. You can't do this alone.
You need to see a neuro who understands CH if that is what you suffer.
There is a "test" to see if you do have CH on this site - have you looked at that yet?
It is a good idea to post a little more about yourself here - whether you have seen a neuro, what drugs have been tried and how often you get hit and when.
Charlie has posted Dr Wrights Circulatory technique many times and it can help. You'll find this if you search the site.
Its tricky to try to help you when we know so little about your condition but if you post a longer post many people will race to your assistance. More info please. Meanwhile read all you can here on this site and the OUCH site (and join) and see how all those other people like you deal with this nightmare that occurs day and night. Many people have found meds that control the pain.
Oxygen is probably the best help you can get. Read all you can about it and ask your doc about supply of it. Not4Hire has just posted all about oxygen on the General Posts section. Check that out.
IM or E mail me if I can help.
firebrix

Title: Re: I'm somewhat new. Got a question
Post by catlind on Apr 7^th, 2003, 6:30pm

Bonniegirl,

Everything firebrix said :)

This family is what I use to get through. I lean on them heavily when I'm in pain, and they carry me through. In return, when I am painfree, I am hear carrying anyone who needs it. Welcome to the folds. There is no magic bullet for CH, but there is magic...it's here in these black squiggles on the screen of your computer. Behind every one is a person unlike any other you will ever know. They fully know and understand your pain, and they will give you the shirt from their back if you need it.

I hope you find relief soon. I know you will get through this, the toughest people on the earth are right here, and they can survive anything.

Cat

Title: Re: I'm somewhat new. Got a question
Post by 2late on Apr 7^th, 2003, 6:38pm

welcome aboard Bonnie! i agree with the rest, this board bails me out of alot. when i can't abort( & i'm presently in a bad way), i lock myself away & keep tellin' myself it's a fuckin' headache & it will end. hope you get some relief soon! .........Jack

Title: Re: I'm somewhat new. Got a question
Post by Not4Hire on Apr 7^th, 2003, 6:50pm

Quote:

is there any one thing(affirmation,mantra,thought..etc...) that you turn to when you feel like you can't take one more second?

....this gives ME solace: (from Frank Herbert-"Dune")...substitute "pain" for "fear'"....

"I must not fear. Fear is the mind killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past, I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain."

Good Luck, Bonniegirl....you are not alone......

Steve(N4H)

Title: Re: I'm somewhat new. Got a question
Post by don on Apr 7^th, 2003, 6:51pm

I'm with Jonny. I focus on the end and knowing it will come. Sometimes I go trough 1 minute at a time.

Title: Re: I'm somewhat new. Got a question
Post by K. on Apr 7^th, 2003, 7:03pm

Bonnie, welcome to clusterville.

This family right here is where I turn to get my support. I don't know where I'd be right now if it wasn't for that.

You will learn a lot as you search through all the information. Let us know about yourself and hopefully we can give you suggestions that will help you manage the pain.

Don't be afraid because you CAN do this and you WILL survive.

Karen

Title: Re: I'm somewhat new. Got a question
Post by cootie on Apr 7^th, 2003, 7:44pm

Hi Bonnie......am wishin you some pain free relief soon girl......PF relief requester Pam

Title: Re: I'm somewhat new. Got a question
Post by Wendy1 on Apr 7^th, 2003, 8:47pm

I'm here with you Bonnie.... But unfortunately, YES a LOT of us do think that we cannot endure one more of these torturous h/a. When we say the pain is suicidal, only ppl with Clusters can TRULY understand what that means. I have had ER docs call me brave, the ER doc last Fri told me "you know these are called man's worst pain". YES, I do know that, but once in a while it is nice to be acknowledged.

SO YES, we feel like NOT ONE MORE. I cry when I first start a cycle. Not necessarily for the pain, but just thinking what lies ahead... I always say, I cannot do this again... and to be honest, sometimes I wonder. I too hate to say that....

Title: Re: I'm somewhat new. Got a question
Post by Opus on Apr 7^th, 2003, 9:19pm

Bonniegirl,
Do you have meds? If you do or not here's some none med treatments. Try sleeping with your head propped up high. This works for some to eliminate wake up CH's. I found that the nasal Imeterx which is a lot cheaper only works well for me when I drink coffee. Wrap your head in ice. It may make the pain worse at first but it should help after a while. Also try this link.
http://www.clusterheadaches.org/resources/non_script_treat.htm
Opus

Title: Re: I'm somewhat new. Got a question
Post by Wendy1 on Apr 7^th, 2003, 9:47pm

Opus....

Just when you think you've read it all. THANK YOU SO MUCH FOR the above link. Us episodics' miss some of this stuff. I appreciate any helpful advice. I can't wait to try the grape juice/gingerale. Bless you.
Wendy :)

Title: Re: I'm somewhat new. Got a question
Post by Charlie on Apr 7^th, 2003, 11:38pm

Welcome Bonnie. We've all been there. This isn't a mantra....it's anything but. Give it several shots:

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: I'm somewhat new. Got a question
Post by Callico_Kid on Apr 8^th, 2003, 12:01am

Bonniegirl,

One thing that helps me often is prayer. I don't have any magic prayers to share, but I will instead find someone else on the board that is having a rough time and pray for them and their problems specifically. It doesn't really stop the pain, but it does take my mind off of myself and the "why me?" questions that we all deal with while struggling with this beast. You will be in my prayers too. Keep us up to date.

jc

Title: Re: I'm somewhat new. Got a question
Post by juvy on Apr 8^th, 2003, 12:08am

Hey Bonnie,

I hate to hear that you're going through this. Something that seems to calm and relax me during attacks (doesn't do one thing for the pain) is mint tea. I usually use it with some soothing music. It usually gives a little light during the dark times.

I wish you PFDAN again real soon. Keep us posted on how you are doing.

Cheers no tears,
April

Title: Re: I'm somewhat new. Got a question
Post by marty on Apr 8^th, 2003, 12:43am

Bonnie..

So sad to hear what you are going through.

We all have our special and very personal ways to deal with CH. My way seem to be "turning on myself' and trying to become stronger by every hit (so hard to do - and sometimes I even curse myself for even thinking that way).

That is why Steve's (N4H) quote hit home with me - replace fear with pain except for in the first sentence.

Bonnie, listen to these people.. they know from personal experience and that is the best there is.

I do not know what meds you are taking or if you have tried O2 yet. Hopefully your insurance will cover but if it does not, O2 is relatively cheap.

Marty

Title: Re: I'm somewhat new. Got a question
Post by kissmyglass on Apr 8^th, 2003, 2:51am

Ice, Ice ice.....I spent most of the last year and a half getting these mind boggling attacks. Not knowing what was going on I started freaking out thinking "what if the next one doesn't stop?" Of course they always do. All I had was Ice, Ice cubes, crushed ice in baggies,(worked the best), crushed Ice in towels, even crushed Ice in silk panties (liked the best ;D).

Days...weeks without sleep.
Was probably close to blowing my head off until I found this board. Many awesome people willing to help from all over the world!, all going through the same thing. You are not alone, we know how you feel but be assured it will pass..... I
Tell us more about yourself.....Meds? how long do the attacks last?
Hang tough.....

Kev

Title: Re: I'm somewhat new. Got a question
Post by don on Apr 8^th, 2003, 5:11am

We will also sell you a Tshirt in the OUCH store.

Title: Re: I'm somewhat new. Got a question
Post by Opus on Apr 8^th, 2003, 4:06pm

Wendy,
You are welcome.

Bonniegirl,
Are you OK? We would love to hear from you.

Opus :P

Title: Re: I'm somewhat new. Got a question
Post by cathy on Apr 8^th, 2003, 4:21pm

Bonniegirl....Im so sorry to hear you are finding it hard to cope right now, just know that there are alot of people here for you, you are NOT alone....wishing you pf days and nights and praying for an end to this cycle for you....let us know how you are.

Cathy :)

Title: Re: I'm somewhat new. Got a question
Post by miCHel on Apr 8^th, 2003, 4:50pm

Bonniegirl,

So sorry you have to be here. But you came to the right place... Give us a little more info and you will get amazing advice here.

Hopefully, by the time you read this post, you will already be feeling much better. Hang in there and stick around!

miCHel