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Beth, just forwarded you that email I mentioned, and check out this link if you haven't:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Beth we have heard many times about 02 not working, followed by success stories when revisited after reading our inf on proper use. I hope it will help your husband as well. You have thousands of members with testimonies on this site! Hope I helps and meanwhile we supporters are here for you too.

Christy

I REALLY want him to try the O2 again this way!!! I will be mentioning all this at his next appointment.  If I just mention at home...it doesn't go far and we can't do anything about it anyway without the prescription for it.  I have mentioned energy drinks...I think I will just purchase some.  Ya never know, he may just pick one up on his own when he gets desperate enough.  Do you chill them? Keep them refrigerated or room temp? I see it is best to chug...maybe hard to do cold?  I never drank one at all...so don't know anything about them.  Are they carbonated? 

Also, some people have said that milk may not be the best thing to have a lot of.  Has anyone have any thoughts or experiences with this?  He drinks  a LOT of milk.  He says it calms his stomach when it gets upset. 

I believe I am registared for OUCH and Clusterbusters both now too.  I will just keep plugging away, reading, questioning, and praying. 

Thanks everyone!

Beth

Hi there!  You are getting some awesome advice from these wonderful people. 

As to your original post, creating memories between the dance numbers is definitely a challenge, but as a Supporter, I have it to be a very exciting one.  My DH is also a chronic Sufferer, with an average of 4-5 hits a day.  I have learned to plan events around them, as well as always having his prevent (Redbull) available if I'm worried an event will run into one of his dance routines.

Our outings normally consist of things outdoors.  My DH becomes anxious if we are in a more public place (fear of having a hit with no escape from people who don't know what he has) so we tend to go fishing, take nature hikes, and overall enjoy the beauty that is our world.  Animals have always been my DH's biggest loves, so any time there is a new show in the local area, you can probably find us there, looking for the next baby to bring into our lives.

I may be one of the odd Sufferers, but I believe I have found the silver lining in my DH's repeated dances...he has allowed me to look at life and see the beauty that I would have otherwise passed by.  The joy he takes in the times between the hits is infectious, and is something I'm glad to be a part of.

Akina wrote on Aug 16^th, 2011 at 4:58pm:


What a beautiful post Akina.....your sufferer is a lucky person!

Joe

LOL Christy 

You've hit the nail on the head - We never feel as alone as when we are clinically depressed. Knowing that there are others who share our pain, and then being able to identify with them on a personal level, is what saves most of us.

Very few people find relief from true depression through chemicals. More often it comes from building relationships with kindred souls.

Has he tried melotonin? I am not sure of the dosage (but am sure if you search in the treatments section you'll find it). Many find if they take it before bed it will help them get through the night without getting hit. I think it has something to do with REM sleep or something, not sure.

He takes 4 Melatonin at 10 mg each.  Also 3 atavan. (sp) He is only supposed to be taking one of those.  Thanks everyone for your support too!  My prayer is that NONE of you has to dance the dance!

Quote:

Prayers are always answered - it's just that sometimes they're answered with a "no."

We all pray that none of us has to dance the dance. When our pleas don't exactly line up with God's intentions, it's good to have a backup plan - like preventatives and abortives.

Hi Beth,

It always seems to be harder for the carer than the patient, as someone said in an earlier post. It seems that your husband does not want to help himself, it seems to me he has fallen into the routine that this will never go away and i cant be bothered anymore. Unfortunately if he keeps going down this path his depression will only get worse, i know as i have been down that path and it can be very scary.

With all the pain that your husband is suffering and it always looking that there will never be a light at the end of the tunnel, it is only natural that your husband will get very depressed and unfortunately all the anger and the mood swings that he is feeling always gets taken out on the other members of the family.

If you can get your husband onto this site and he can see for himself that there are alot of other people in his situation and that everyone on here is going through the same thing, he will find that there are always people here to listen to what he has to say, i hope that he will some day come on and have a look at all the alternative treatments that people talk about and that maybe there is one on here that he hasn't tried before and will be willing to have a go with. I would also suggest that he give to O2 treatment another go using the right method and see if he gets any better results with it. As they say it may or may not work but you don't know if you don't give it another go.

You mentioned that he was taking some meds but going over the recommended doses, you should make sure that your GP or Specialist knows about this as they might recommend something different and stronger to try and prevent the attacks. What else does he use to try and stop the pain once the attack has started?

Sorry for rambling on but i have been through this as the CCH sufferer and my family copped the brunt of all the crap that i was going through and it wasn't a pretty sight. My longest cycle was for 18 months and i had my ups and downs, but the pain was there 24/7 and it was harder on my family, so you as a carer must also make sure that you don't start forgetting about yourself.

Please remenber that i am not a Dr and that these are ony the thoughts of another sufferer, so i feel for you and your husband.

Hopefully we will be pain free one day.

Matt