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        Cluster Headache Help and Support >> Cluster Headache Specific >> It Hurts!!!!!!!!!!!!!!!!!!!!!!!
        
(Message started by: seccsij on Mar 17^th, 2006, 10:04am)

Title: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by seccsij on Mar 17^th, 2006, 10:04am

:'( omg it hurts! it just woke me up again. I'm so tired. I've only been asleep for 2 hours of course. That's how it is for us, isn't it? I've had a Cafergot tab, now I have to wait for it to take effect. I'm hoping that talking to you will take my mind off it a bit. I can't think of anything else to say though so I think I'll surf the net for a while. Thanks y'all. :-*

Title: Re: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by Ghost on Mar 17^th, 2006, 10:27am

Hang in there Bro!!!!
Sending VIBES right now!!!

Grab the o2 and breath!!!!!!!

Mike

Title: Re: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by Guiseppi on Mar 17^th, 2006, 10:42am

So sorry, sometimes I think the sleep deprivation is worse then the pain.....course I only think that when I'm not in the middle of the pain! Hope it breaks soon.

Guiseppi

Title: Re: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by Bob_Johnson on Mar 17^th, 2006, 11:14am

Cafergot not the best abortive for cluster--slow acting compared to other meds. See,

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by seccsij on Mar 17^th, 2006, 11:55am

Thank You so much! I'm afraid that after 21 yrs of searching for relief, Cafergot and O2 are the only things that bring any relief. Problem is, here in Australia, you have to go to E.R. for O2 for CH. Stupid if u ask me, but I've asked & asked. I couldn't even get a GP to let me try oxygen until last year!!!!! CH is still virtually unrecognised down under guys. [smiley=huh.gif] The Cafergot has worked for now. Should be able to catch a few more minutes of sleep with the shadow that's left now. C U L8R. :-*

Title: Re: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by E-Double on Mar 17^th, 2006, 12:14pm

Check out the Aussie thread in the Getting to know ya section!!
There are fellas there who have mangaged to get their own O2 set ups!

Inquire!

Best of luck,

Eric

Title: Re: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by Mr. Happy on Mar 17^th, 2006, 12:22pm

Barry Coles did some legwork for NZ/Au O2.
Here's the link. (http://www.mushys.com/kiwi/) <-----

Title: Re: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by Ghost on Mar 17^th, 2006, 12:23pm

If nothing else get welding o2 tank same stuff as medical. find a regulator that will attach and mask I am sure someone will help they did for me. bypass the whole med field for it if necessary.

Hope this helps

Mike

Title: Re: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by seccsij on Mar 17^th, 2006, 8:05pm

:-*
Thanks everyone!

Title: Re: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by Jasmyn on Mar 20^th, 2006, 1:34am

Hang in there!

Title: Re: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by zwibbs/Scott on Mar 20^th, 2006, 1:40am

Hang tough Brother----No one knows better than the people on this board.....These things suck

Title: Re: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by wip5150 on Mar 20^th, 2006, 12:35pm

Don't let the bastard get you down. Keep strong, as hard as it may seem at times.

PF wishes.

Title: Re: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by mynm156 on Mar 20^th, 2006, 4:01pm

I HEAR YA BRO!! HANG TOUGH!! GOOD VIBES!

Your Brother in Pain

MYNM156

Title: Re: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by sandie99 on Mar 20^th, 2006, 4:18pm

[smiley=hug.gif]I wish you PF days asap,

your sister in pain,
Sanna

Title: Re: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by Barry_T_Coles on Mar 22^nd, 2006, 7:22pm

Hi Seccsij
Barry from W.A. here, welcome & sorry you are hurting.
I see Mr Happy has posted the link for the info I gathered on getting o2 if the medics couldn’t work it out.
Also I am using a bubbler / humidifier that is slightly modified from the usual hose in the water one.
PM me with your Email address and I will send the info on how to make one; it is really simple and stops you from drying out in the nose, throat & mouth. ( The company site I work from is super safe with double fire walls so there’s no chance of bugs) When I Email back I will give you better instructions on how to set up the gear so you have little fuss.

Below is a copy of a post from Dragon man from Perth on getting o2 through your Doc, you may find it useful.

Hi brian and all,
I am in the process of arranging an account at bocs WA, thanks ...
They told me to call the oxy care dept in Sydney first..
ph 1800050999 before they could hire.
Oxy care want my Dr to fax their medical team directly
fax no1800624149 to verify my CH condition and include my name, address, phone no. and importantly the flow rate of oxygen needed per minute and the hours of use per day.
Any ideas of what to tell my DR ? ie flow rate and hourly usage ? this would be handy info before i call him.
The lady who I spoke to at oxy care has arranged my account already and is now waiting for the DRs letter to be recieved, she picked it was for CHs and said as soon as they recieve the letter she will phone and then bocs will deliver the first bottle to my home once i call them with the verification of my needs.
The C bottle holds 409 litres, is that enough ? or would it be worth getting a bigger size ?
Thanks everyone
Michael

Here's a link to some good info in Meds Treatment Therapies section written by Clusterchuck, this man knows his shit.

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1142748998

Hope this helps
Kind Regards
Barry

Title: Re: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by Richr8 on Mar 22^nd, 2006, 11:26pm

Hang tough bro! And don't forget that the lights are always on here if you need some support. When you are feeling better , use that time to find a commercial option for Oxygen as suggested above.

pf wishes,

Rich

Title: Re: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by BarbaraD on Mar 23^rd, 2006, 6:46am

Have you tried the melatonin at night to get some sleep. I take 9-12 mg at bedtime and it gets me the rest I need to get thru the day hits. Takes a couple of weeks to get in your system, but has worked wonders for me. If you can - try it....

Hugs BD

Title: Re: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by seccsij on Mar 23^rd, 2006, 12:08pm

Thanks everyone, I am avidly searching thru the info u gave me. Been over 4 weeks now. Getting to kip8 :'( but i'm no newbie to CH and frommy history , this demon should be gone in another 3 weeks ;;D

Title: Re: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by Jonny on Apr 2^nd, 2006, 7:35am

on 03/17/06 at 10:04:20, seccsij wrote:

:'( omg it hurts! I can't think of anything else to say though so I think I'll surf the net for a while. Thanks y'all. :-*

You sure you have CH?

Title: Re: It Hurts!!!!!!!!!!!!!!!!!!!!!!!
Post by seccsij on Apr 2^nd, 2006, 4:29pm

Thanks for your advice and encouragement. I am 1 million % sure I have CH. I have had to develope strategies to separate myself from the pain. It is not at all easy and does not always work but I have found that if I let the pain have control, it is much worse and harder to stop. I was abused for much of my life and not allowed >:( to express my agony and so I learned ways to cope in silence like, web browsing, focussed breathing, relaxation, keeping busy, body awareness and just a heap of little things. It is hard to concentrate on using all these tools but if I am below Kip7, I can usually manage.
20 years ago, if someone had told me to try to relax or breathe through it, I would have slugged 'em but, I know now that it IS possible at times and it CAN work occasionally. Just another weapon against the demon. [smiley=laugh.gif]. Wishing you all PF days. seccsijxxxx

p.s.
happy birthday sandie99