Ouch, tough bind to be in. Do not have an answer as to what Australia will allow for imports. But check out the imitrex tip on the left. Many have found they can abort an attack with as little as 2 mg of the sumatriptan. With the imitrex tip you can get as many as 3 aborts out of each syringe.

Have you tried energy drinks yet? Rock Star, Red Bull, any containing the combo of caffeine and taurine. Chugged at the first sign of an attack they'll abort or really reduce an attack for many.

I'm sure some of our "Down Under" CH'ers will be along shortly to give you some ideas of what works in your system.

Finally, thank you so much for being a supporter. You rock our world!

Joe

Hi Shell,

I am also in Australia.  I have to say I have never had any problem getting oxygen here.  I use BOC gases and all they require is a prescription from your GP.  Once you've got an account with them - no problems at all. 

I'm also surprised to hear that you are paying $600 a month!  That seems outrageous!  Who have you been getting your oxygen from??

I am aware of other sufferers in Australia who use oxygen and have not heard of any problems accessing it nor paying that sort of money! 

Having said all that - I have been keeping my eye on ebay for regulators because that is an expensive part of the monthly rental.  Seems you can pick them up relatively cheaply.

I have also read that many people on this site use welders oxygen if they cannot get medical grade - a problem in the US because of lack of insurance or insurance companies not approving use.  But as I say, never had a problem here.

I wish you and Cory all the very best.  Actually, before I go.... I take it he has tried Verapamil as a preventative????   used in conjunction with the imitrex.

Mmmm....   I highly recommend you contact BOC if you haven't already.  Let us know how you get on.

Keeping you in my thoughts,

Kate

Kate,
      Sorry $600 was the amount quoted to me for a months supply at 15litre flow for 20 mins x 8 attacks a day by Air Liquide. Can you tell me what cost is reasonable? I have no idea on correct price, I was happy to pay what ever it cost. Also do you know where to get a non breather mask, I was told that I had to order one from over seas but based on your info I think they gave me a lot of incorrect info!
Thanks again.
                              Regards Shell

Glad to be off help 

I have actually just been looking at ebay now and came across a few of the non-rebreather masks (I don't actually have one).  They seem fairly inexpensive.  There is a person (company?) on there - medivac22a who has 5 in stock at the moment.  The price is $7 for the mask and $6.50 for postage.  Think I'll get myself one 

The last cycle I had wasn't too bad thankfully only one hit a day a few times a week.  I had one E tank and the regulator and that cost me $18.37 for the regulator and $11.74 for the tank.  I must say that since I've been having 02 in the house, my cycles have been so much better and I haven't needed as much 02.  I think losing the fear factor has been a huge help!!  This last cycle I found I could abort a hit in about 5-10 mins which  was just excellent!!! !

BTW I only get hit at night.  Does Cory have attacks during the day?  If so, vigourous exercise can be helpful if started at the first sign.  Also a good way of getting rid of shadows too.

I once had a cycle that lasted just over 6 months and I put that down to GP ignorance.  He had no idea, and I took so many different drugs in that time - I think I got a lot of rebound headaches.  In the end he sent me to a neuro who put my on Epilem (epileptic drug) and that knocked it off!! 

I have also had the experience of going to the local hospital for oxygen and was treated like a druggie - very upsetting.  I insisted that they look up oxygen therapy for Ch and finally they let me have it, sadly too little too late and it was one hell of a night.   Since then I have been getting oxygen at home each cycle and that has been fantastic.

Good luck with BOC!!!

Kate

Hey there, Shell and Cory. I'm so sorry to hear of the cycle Cory is in. I pray you will, with Kate's help, find the O2 and equipment you need. And the cost of imitrex is high, here, too. I did find an online Canadian pharmacy that was relatively inexpensive (DHE45 inectables) and the cash outlay was about the same as my insurance deductible. Perhaps this would be helpful to you? Blessings! lance

Hi Shell and Welcome!

Since you both have little ones you might find this post
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or helpful for the kids and how they can help your fiancee deal with his CH hits.  It has many suggestions to help a child feel a little less helpless when it comes to a parent with CH.

Wishing your honey many Pain Free Days and Nights!

Thanks to everyone for replying to us!!

Brew,
         Thank You Ive been checking them out!

Kate,
         Thanks so much for your help! I'm definitely following your advice and also buying a mask from the supplier on ebay. About 80% of the headaches are at night, last yesterday was 1pm 1hr, 4pm 1 1/2hrs then last night this morning 9pm 1/2hr, 12am 1hr, 2am 1/2hr, 3am 1/2hr, 4.30am 1 1/2 hrs  7am 2hrs poor guy is recovering in bed, he is exhausted. This amount of attacks has been roughly the same for last 6weeks however the length of each attack varies all at kip 10. He keeps saying if it wasn't for the girls and I he wouldn't be here and I can certainly understand his point. Cory was on epilum 1000mg morning and night for 3 years, it didn't seem to have a great effect or any at all for that matter. I think one of the major probs we have is getting the neurologist appointments/ reviews to change the levels of meds as often as required, the GPs are great but only want the neuro to alter medication doses and I believe that the levels should be monitored more frequently. Yet to hear back from BOC but will definitely let u know how we go.

Shaggy,
            Thanks for the tip, we have been members for a while but definitely need to do some more work with this to find some workable options. I Just need to remember there is Hope sometimes.

Lance,
          I will be checking this info out any chance to save some $ would be good, thanks for your input I appreciate it!

Joe,
       I wish this would work but unfortunately lithium with Cory = violent psychosis, he was on it before we had the girls and  its the one medication that Cory has flatly refused to take. He says that he would not be able to have us around him if he was on lithium and we are what gets him through, so for him its just not a viable option and I have to respect him for making that choice. Thanks so much though for your input and ideas, your experience is appreciated!

Ginger,
          Our girls have been wonderful with Cory, they understand CH and are very compassionate and helpful. We are very lucky that way, sometimes I have to remind them that they are only young and need to just be kids rather than trying to be supporters. There is some great info on the link that you posted and thanks for thinking of such an important aspect of educating and helping the girls to understand, its a pity some adults aren't more compassionate and willing to learn like kids are. Thanks.

Brian,
       Thanks for reminding me about the differences in O2, it had completely slipped my mind. One of those things that I knew but in my determination and haste to get the O2 had totally slipped my mind. Thanks for your number and support, I'm heading off for a nap now (last night was a long night) but I will give you a call in the next few days. Cheers!


To everyone,
                  All your help, suggestions, info and support just confirms my statement that this community rocks!! Your understanding and compassion is undeniable and appreciated.
               Forever grateful, Shell

Hi from over the ditch in NZ

One other thing to consider is a demand valve as that might cut down the amount of oxygen used.

Hi guys!
            Thanks for your input, I have organised the O2 with Boc who were more than happy to accommodate our requirements and were fully aware of the usage in regards to Ch. I'm pretty sure that the other company Air Liquide was just not interested in helping and gave me such bad info on the products and cost to try and discourage me. The different aspects of products available for O2 are very interesting, it seems that the previous oxygen therapy that Cory has had given by the doctors and hospital, was all wrong in regards to administration and rates. I have purchased 3 different types of non breather masks, a regulator and flow metre. I have been told that the flow rate has to be constant so as to the demand valve I'm not sure but checking it out as it sounds like a good idea if workable. The verapimil that Cory was on was quite a while ago so I'm having trouble recalling the doses, I'm pretty sure it was only altered mg wise a couple of times.  After all your great advice and the research I have done over the years, we have decided that its time to start from scratch with the meds again and document everything.  The Gp agreed to try prednisolone as abortive again so we've started that today, I'm guess I'm pushing my luck at the moment but I'm determined to help Cory somehow. Its so nice to know you guys are out there, its amazing how communicating with others who understand has made our world seem so much more complete! Thank You!
                                        Regards Shell

Quote:


You are doing exactly what we need when the pain is so great we can't even think straight! He's luck to have you in the ring with him. Blessings. lance

You rock, Shell!!
Cory is lucky to have you!
Keep up the great work!

Good day guys!

            Thanks for your support! Its so refreshing to know you all understand, rather than being treated like a hypochondriac. I've  checked back through our records and the dose of verapamil was lower than 600my a day but some of the side effects were nasty such as excessive bruising and blood flow, it never seemed to help so I thinks that's why the docs stopped it. We are headed to the doc tomorrow so  will take my trusty folder  (over the years Ive put together a folder with anything related to ch) and see what we can organise.
            Great news to share with you is Cory only had 1 attack last night! It lasted for about 1/2 hr but was at kip 7 so that's definitely an improvement.  He has been up all night disco dancing as he put it, not sure what to call it, have heard it referred to as flicking, tremors, muscle spasms, restless leg syndrome, his arms and legs spasm he cant talk properly and it goes on for hours. The closest thing I can say is he looks like steady eddie (A disabled comedian, down under). Does anyone else have this problem? The docs aren't sure if its because of so much imitrex or whats causing it.
        This has been occurring for about 7years now but only during and directly after the clusters.  The doc put him on valium to try to stop it but unfortunately valium does not agree with Cory, he gets disorientated and cant remember anything. Last time he was on valium he was so disorientated that I had to follow him around all night stopping him from trying to walk through windows, every time he had a cigarette he almost set himself on fire. After 6hrs of this and deciding that I probably shouldn't handcuff him (have these for work purposes, we both do private security) I called an ambulance, when they arrived they didn't want to take him because Cory said he was OK, I had to threaten to knock him out because they can not refuse to take an unconscious person to the hosp. After the ambo realised how serious I was they took him to hosp strapped to a trolley, doctors said we just had to go with it until all meds were out of his system so I took him home at about 7am, tucked him into bed and climbed in under the doona myself. I was just about to doze off after looking at the roof for about half an hour when Cory who had been snoring since he hit the bed, rolled over gave me a big kiss on the cheek and said " Ive had the best night sleep babe, I feel great, think that valium really helped". I could have choked him, I told him what had happened and he had no memory at all. Guess its funny now but at the time I didn't see it at all funny.
          All this aside its great to see Cory have a night with some relief, so hoping this continues!
                          Regards Shell