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