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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Please forgive me... I need to unload 
        
(Message started by: Kate in Oz on Sep 8^th, 2005, 6:59am)

Title: Please forgive me... I need to unload
Post by Kate in Oz on Sep 8^th, 2005, 6:59am

Hello all, this is a terrible way to introduce myself but I hope you will bear with me :-/ I am usually a positive person and have been reading the board for the past few weeks. As well as the tears managing to have a good laugh, so thanks.

Ok now to the whinge!!! My recent cycle started middle of last month and the meds aren't working so I'm a bit beside myself. Tuesday night was a shocker. Having earlier that day been to see the neurologist who suggested that seeing how being pregnant had worked for me before - the only time in 15 yrs I've not suffered - perhaps I should try again ! :-X It's 9pm and I'm having the worst ha so far (usually come when I'm asleep), an hour later jumping around, smashing my head into the wall heater, huffing and puffing, swearing and crying... finally I call an ambulance to administer some 02. ahhh relief for a short while. My 3yr old son is inside on his own so I go back in ... he's awake and crying. Headache is back in a minute. Take some pain killers on top of the topamax ? that the neuro gave me that day (also on verapamil) urgghhh I'm poisoned. ?? End up later in emergency... and wait for it... the nurse takes me off the 02 with "well I think you've had enough of that!" in condecending tone and "perhaps your just dehydrated".... urghhhhhhh

Thankfully a doctor came who was willing to do a little research...put me back on the 02 crisis over :P

Getting the 02 installed at home tomorrow :)

Has really helped to get that off my chest....thanks

Praying for us all

Kate

Title: Re: Please forgive me... I need to unload
Post by AussieBrian on Sep 8^th, 2005, 9:06am

G'day Kate, and by any standards that's bloody awful.

It's just my personal opinion, which counts for nothing, but Rule 1 is taking over completely from the medical twits.

Decide for yourself which medications you want and stock them all up at home. Go doctor-shopping until you get one who'll give you what you need.

Barry in Karatha has a beaut recipe for getting 02 at home, Jacqs is a girl and knows just how you feel. Firebrix also has certain opinions and she's just a PM away.

Just now you're being led, and that's wrong. It's time for you to take control. All the info is here and you're among friends. Our good friends Margi and Nani also have much to say about CH and pregnancy.

Either way, this is a good time to sit down, take a couple of deep breaths, and put the billy on. Then give the kids (+25%) a big fat cuddle from all of us here at ch.com.

Chin up, chest out, and it's gotta rain soon.

Cheers and beers,

Brian.

Title: Re: Please forgive me... I need to unload
Post by Kim Y. on Sep 8^th, 2005, 9:13am

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

Quote:

Ok now to the whinge!!! My recent cycle started middle of last month and the meds aren't working so I'm a bit beside myself.Been there. What all have you tried or been on? Tuesday night was a shocker. Having earlier that day been to see the neurologist who suggested that seeing how being pregnant had worked for me before - the only time in 15 yrs I've not suffered - perhaps I should try again ! One question are you wanting another one at this time....If you are then good luck and I am very happy for you...Don't get me wrong I love babies and children but its just a temporary fix and then the beast comes back. It's 9pm and I'm having the worst ha so far (usually come when I'm asleep), an hour later jumping around, smashing my head into the wall heater, huffing and puffing, swearing and crying... finally I call an ambulance to administer some 02. ahhh relief for a short while. My 3yr old son is inside on his own so I go back in ... he's awake and crying. Headache is back in a minute. Take some pain killers on top of the topamax ? that the neuro gave me that day (also on verapamil) urgghhh I'm poisoned. ??Wow; pain killers usually don't help cluster suffers. End up later in emergency... and wait for it... the nurse takes me off the 02 with "well I think you've had enough of that!" in condecending tone and "perhaps your just dehydrated".... urghhhhhhh We spend a lot of time educating the Dr. and nursing staff especially in the ER. Haven't been there in awhile but have O2 here at home and my Imitrex.

Thankfully a doctor came who was willing to do a little research...put me back on the 02 crisis over What did the order read? Many of us need O2 per nonrebreather mask at 10-15 L per min. for 15-20min

Getting the 02 installed at home tomorrow

Glad to hear you will have one of the abortives.

Welcome to the sight but truely wish you didn't have a reason to be here. Glad you are though this place is wonderful...The support you get here is great and your amongst a family that understands what you are going through...

Tons of stuff to the left to print out and take to your next Neuro visit to educate the hospital/neuro staff. Some carry a card that shows what they have been on what works and so on to show at the ER because to be honest none of us can talk much when being hit.

PFDAN to you.................Kim

Title: Re: Please forgive me... I need to unload
Post by Kate in Oz on Sep 8^th, 2005, 9:55pm

Thanks so much for your replies :)

No I don't want another kid, as lovely as my son is... impossible to deal with him when the beast has a hold!! (I'm on my own)

Problem I'm having this cycle is that we moved house at the begining of the year so having to go through the whole educating the medical profession again.

Went back to new GP this morning - who has treated CH's before !! - and he's given me the script for 02 - 3-6lts per min... and its coming this afternoon ;) The relief is palpable. Goodbye pain - fingers crossed. Have tried so many different meds over the years and had so many rotten side effects ... thinking this is the best way to go and oh my topamax yuck!!! be happy to stop that.

Thanks again

PFDAN to you all

Kate

P.S It really was a help to get that off my chest. This is a fantastic site.

Title: Re: Please forgive me... I need to unload
Post by Barry_T_Coles on Sep 9^th, 2005, 1:31am

Hi Kate
This is Barry in the nor west of WA.

Welcome to the best nut house ever, sorry you gotta be here but you are in good company and these people now more about this than any one and remember that no question is silly wev'e all had to ask sometime.

Great to see you got the o2 I wish I had known about it when I first got hit.

All the best
Kind Regards
Barry

Title: Re: Please forgive me... I need to unload
Post by paul_pero on Sep 9^th, 2005, 7:09am

Hi Kate,

Sorry to hear your pain.

Glad you getting O2. I got it this last cycle and it worked wonders for me. You say your script is for 3-6 lpm. I had to go to 8 sometimes 10 lpm to effectively kill the pain. Try and get a regulator that can go that high just incase. Also make sure you use a non rebreather mask. I used a normal one for a while, it worked but the non rebreather seemed to work better. And get a big tank, as you will want to use it as much as you can.

PFDs to you
Paul

Title: Re: Please forgive me... I need to unload
Post by Sandy_C on Sep 9^th, 2005, 12:54pm

on 09/08/05 at 06:59:42, Kate in Oz wrote:

Having earlier that day been to see the neurologist who suggested that seeing how being pregnant had worked for me before - the only time in 15 yrs I've not suffered - perhaps I should try again ! :-X

Getting the 02 installed at home tomorrow :)

Has really helped to get that off my chest....thanks

Praying for us all

Kate

Welcome Kate. Sorry you are here, but this is the best place to be. Laughed/cried with your comment about your neuro suggesting another pregnancy. Ask him, does HE want to raise and support the child? If not, tell him to get his A$$ out, go back to school, and start learning something about CH.

Happy you're getting the O2. Many people on these boards have had wonderful success with it, and I hope you do too!

Wishing you PFDAN

Sandy

Title: Re: Please forgive me... I need to unload
Post by twoyeartorture on Sep 10^th, 2005, 10:21pm

Well young lady, you have been getting some good advice. Before I met my domestica partner, Jeff, I took every doctors word as gold.
In the first three months of us dating, he got to experience the wonderful life of living with someone who fights the headache demon every two years.
Fortunately, he had numerous experiences with docotrs (he had baby cancer and his mother was misdiagnosed numerous times until she found someone who knew what they were doing). He took hold of evrything and demanded proper treatment. The hospital had left me sitting in the waiting room, with all the bright lights, noises, etc. He let them have it. Then when the orderly tried to take me for my CT and MRi, (thank goodness he was there), the doctor had specifically stated I was not to be taken for those tests until I received my medication.

All I can say, is if you have a close friend or family member that is willing to be your advocate when you can not speak for yourself, it is the best and safest thing to do.

Amy