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        New Message Board Archives >> 2007 General Board Posts >> The beast has me and he won't  let me go!
        
(Message started by: luveemom on Aug 14^th, 2007, 10:56am)

Title: The beast has me and he won't let me go!
Post by luveemom on Aug 14^th, 2007, 10:56am

I am almost out of rope.....if I had any more I would tie a knot and hang myself. I have been dealing with this pain now for five weeks and I am losing my mind. How long can a person be in pain day in and day out and not go insane? The o2 is like a f*ing bandaid I swear.....I just feel like a bus has run me over........my hair hurts...I press so hard on the bone in my right eye it feels bruised..........I am just sooo tired, and I want to feel good....I want to enjoy my baby, and I want my life back. Everyday I wake up, it just starts all over again...I'm spent....I just hurt so bad.....
alicia

Title: Re: The beast has me and he won't let let me go!
Post by thomas on Aug 14^th, 2007, 11:06am

God, I can relate to how you're feeling. Most here can, all I can say is it is worth it to hang on and fight.

Title: Re: The beast has me and he won't let let me go!
Post by nani on Aug 14^th, 2007, 11:09am

Mentally kick him in the nuts, Alicia.

Clusterheads are the toughest, strongest, bravest people I've ever known, hon. You can do this.

hugs and some more rope, nani

Title: Re: The beast has me and he won't let let me go!
Post by barry_sword on Aug 14^th, 2007, 11:15am

So sorry you are suffering Alicia. Hang in there, we all know all to well the pain you are dealing with. PF vibes heading your way right now.

Barry

Title: Re: The beast has me and he won't let me go!
Post by luveemom on Aug 14^th, 2007, 11:26am

Thank you all, I am trying.......but I feel like I have nothing left in me.......I feel terrible that my older kids feel like I am "sick" all the time.....they ask me everday..."do you feel better", and it breaks my heart to say "NO"......I sometimes just lie and say..."yes" I am fine today, but I think they know it is not me....I don't feel like me anymore.....I feel like it's not fair to them to be stuck with this "sick mom" all the time...sorry for being a bummer today....I am just draggin ass I guess...I been fightin him for so long now, I am too tired.

alicia
ps...you are all a blessing..

Title: Re: The beast has me and he won't let me go!
Post by lionsound on Aug 14^th, 2007, 11:31am

Alicia,
IT'S OKAY TO FEEL THIS WAY WHEN YOU FEEL LIKE CRAP! :)

your kids love you no matter what and you wouldn't be you without your head so they know it's a package deal. :)

YOU ARE A GREAT MOM!!!
and you will get through this!! YOU CAN DO IT!!!

more in a minute...

Title: Re: The beast has me and he won't let me go!
Post by barry_sword on Aug 14^th, 2007, 11:33am

[smiley=hug.gif]

Barry

Title: Re: The beast has me and he won't let me go!
Post by alienspacedork on Aug 14^th, 2007, 11:40am

Some days, many days, it's hard to keep going. We get so tired... and the pain just never seems to end... [smiley=hug.gif] But we keep on keepin' on.

You can and will get through this! There are better days ahead. There will be - the first morning you wake up and realize the beast didn't visit during the night; the kids' laughs that make you grin from ear to ear....

We're here for you. and it IS worth it to keep going. Can you get back into the doc/neuro to get your prevents adjusted?

Kind of a silly idea, but it might help you feel a little more in control.... find a soft doll (like Raggedy Ann) and make it the/your beast. When your hit is over, stomp the hell outta that doll - because you beat the beast yet another time.

ps - my kids saw me getting hit. a lot. my daughter hated it - hated what it kept us from doing. and she turned out great!!! (just ask - lots of these folks have met her).

Title: Re: The beast has me and he won't let me go!
Post by artonio7 on Aug 14^th, 2007, 11:42am

Hi Alicia,

It's hard enough to be a mom and raise children when you're on top of your game... It has to be a real nightmare to be wrestling the beast and dealing with the kids.

Hopefully things will take a turn for the better soon. Something that you said in your first post struck a chord with me... "o2 is a bandaid".

Are you usng the 02 at a 15 lpm flow rate and are you using a nonrebreather mask?

Is it a clustermax and are you sure you have a tight seal on your face?

Do you begin to use o2 at the first tingle of an attack?

Do you continue to use o2 for up to 15 minutes?

Do you use ice on your head in addition to using the o2?

If you would like to speak with someone about the proper use of o2 there is a chatroom specifically designated for that on the OUCH website.

Follow this link to find more info about the use of o2. http://www.ouch-us.org/chinfo1.htm

I hope it helps.

Keep your chin up.

with warm regards,
Tony

Title: Re: The beast has me and he won't let me go!
Post by lionsound on Aug 14^th, 2007, 11:43am

Alicia,
I feel exactly the way you do a lot. I have 3 kids too...two much older the one year old. It is hard when you lose yourself in the pain because you have to give so much of yourself out every day. The kids will be okay.

Can the older ones help you with the baby? My oldest loves to help watch his brothers when i feel awful because it's a way of helping the whole situation and me at the same time.

I wish i lived near you.... I'd come over and help. See if you can get someone in your house (neighbor, relative,friend) to come over for a few hours. I know sometimes it's more of a hassle if your head hurts, but if you are feeling this low maybe you could use the mental and physical break.

We are here for you!
PF's!
-Rori

Title: Re: The beast has me and he won't let me go!
Post by luveemom on Aug 14^th, 2007, 11:51am

Thanks lionsound....those are some really nice things you said...I needed the hug barry..thank you too! My prevent is topamax and I am still ramping up...so I just saw neuro and I just gottan hang in there with that one.
As far as o2 goes...long story short...I am an EMT so I know a bit about it, but I have a bit of a jimmy rig here...I have a small tank, a nonreabreather, and the o2 concentrator(I know, I know) hubby was trying to help when he got it......they are hooked together....I tried to order the clustermasx and you cannot get them now.....they are having payment problems and they are not taking any orders....so that's that.....the o2 helps...but it comes right back.....the red bull helps too...I learned that from you guys.....it seems to works better now than the o2...quicker anyway

Title: Re: The beast has me and he won't let me go!
Post by LadyElaine1 on Aug 14^th, 2007, 12:04pm

I know so well how you feel. I was chronic when my children were small. Looking back I don't know how I did it. The kids were ok. Through it all.
You will make it. I know how you feel when you think you have not got it in you to fight another second. You do have it in you to fight. You have this board to vent on. You have many people that have you in their thoughts.
I wish I could come help you. It doesn't seem like enough sometime to just post to a person hurting like we do.
Keep fighting ! You will win the battle !

Title: Re: The beast has me and he won't let me go!
Post by lashultz on Aug 14^th, 2007, 1:01pm

Don't let the SOB win. Everyone here knows what you are going through. Life will get better.

Lee

Title: Re: The beast has me and he won't let me go!
Post by artonio7 on Aug 14^th, 2007, 1:12pm

on 08/14/07 at 11:51:22, luveemom wrote:

As far as o2 goes...long story short...I am an EMT so I know a bit about it, but I have a bit of a jimmy rig here...I have a small tank, a nonreabreather, and the o2 concentrator(I know, I know) hubby was trying to help when he got it......they are hooked together....I tried to order the clustermasx and you cannot get them now.....they are having payment problems and they are not taking any orders....so that's that.....the o2 helps...but it comes right back.....the red bull helps too...I learned that from you guys.....it seems to works better now than the o2...quicker anyway

Get a 15 or 25 lpm regulator... with the concentrator you are not getting enough o2 to do the job.

Title: Re: The beast has me and he won't let me go!
Post by tanner on Aug 14^th, 2007, 1:20pm

Alicia, I can't imagine dealing with this crap with kids at home, but then I can't imagine dealing with this with any number of extenuating circumstances or dealing with this at all!

I just know that it can be dealt with! What are the options? Zero!!!

I sense from your post that you at least have some support on the home front. That is HUGE!

You also have the support of the strongest, fiercest, most compassionate family group in the world right here.

I know that "hang tough" and "keep fighting" sound trite just now, but that is essentially the key to success. Even if the pain never gives you a day off you have won if you can stay positive, give forward, and keep kickin!

Tim.....who leans and moans and whines and wins every day.

Peace, Love, Light and vibes coming your way :-*

Title: Re: The beast has me and he won't let me go!
Post by aloneuk on Aug 14^th, 2007, 1:38pm

sweetie im so sorry your getting hit so hard,

theres not much i can say that has'nt been said :-/

we all know how you feel, where here for you.

HANG ON TIGHT it really WILL GET BETTER

we're all rooting for you pm me anytime

sending the biggest vibes ive got

[smiley=hug.gif] [smiley=hug.gif]

ike x

Title: Re: The beast has me and he won't let me go!
Post by E-Double on Aug 14^th, 2007, 2:42pm

YOU can and will do it.
You have to and your little ones need you to!

That's what we are about........persistance!!!!!!!

Hugs and restful times

Title: Re: The beast has me and he won't let me go!
Post by Tiannia on Aug 14^th, 2007, 3:43pm

<<<<<<<<<<<<<<VIBES>>>>>>>>>>>>>>>>>>

Alicia, I can understand, all of us here can. I started having clusters when my son was less then a yr old.
My daughter was barely 5. Now it has been 5 yrs and I'm still fighting. It is so hard to see thier faces when I am in the midst of the pain. and they want to bad to help and I know that there is noting that they can do. My daughter will bring my cold washclothes, or whatever else she can find that might help to her. There where so many times that my kids would rock with me, Sitting ont he floor crying and rocking with the pain and slamming my head and they would sit down and my son would say that he was helping. Even now they know as soon as they see my face when a hit is about to start, and they both grab my head and say "God and Goddess, make the pain go away." Does it help, not really, but I tell them it does and thank them and then it all goes black for the pain.

You can get thru this, your are a mom as well as a CHer, you are tougher then hell. Your kids are just one reason that you can get thru this and knock the fuker on his ass.

It is ok to question and this is the best place in the world to vent and tell people who understand just how tired you are and how bad this screws up your life and everythig that is a part of it.

Keep strong. PF Wishes
Tia

Title: Re: The beast has me and he won't let me go!
Post by Charlie on Aug 14^th, 2007, 3:53pm

I understand and now is the time to add my technique to your arsenal. The worst thing that can happen is that it won't work but believe me; it does if you keep at it. All it takes is once success and you'll know how to use it:

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie

Title: Re: The beast has me and he won't let me go!
Post by luveemom on Aug 14^th, 2007, 4:04pm

OMG you guys are ALL so amazing......thank you, thank you, thank you......I will try it all, I will....I had to log off and run to the drug store to stock up on more red bull and grab an ice pack whle I was there.....my sweetheart of a 15 yr old watched the baby for me :)....I need to run cause I am getting my 4 o'clock hit just like clock work...man he doesn't let up!! Oh God, here we go again......... :'( I am hangin' in.....thanks to all of you..........

many thanks.......
alicia

Title: Re: The beast has me and he won't let me go!
Post by sandie99 on Aug 14^th, 2007, 4:16pm

Alicia,
[smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

Lots of PF days your way,
Sanna

Title: Re: The beast has me and he won't let me go!
Post by Tiannia on Aug 14^th, 2007, 4:57pm

on 08/14/07 at 16:04:15, luveemom wrote:

Now that sounds like me. for 4 yrs it was clock work, I knew that no matter what I did or did not do, I was getting this at 4am, 7am, 11am, 3pm, 6pm and 11pm.

But you sounds better. It was sooo very helpful to know that it did not matter how crazy I sounded to the rest of the world that the people here understood.