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        Cluster Headache Help and Support >> Cluster Headache Specific >> Just when I thought they were gone
        
(Message started by: allnight9 on Aug 26^th, 2007, 12:49am)

Title: Just when I thought they were gone
Post by allnight9 on Aug 26^th, 2007, 12:49am

Hey, I've been PF since 4Jul06. Until last night when the beast came knocking around 2230 with a 8. I hoped that it was just a one nighter, here I am tonight waiting for the narqs to work on another 8-9.
I hope you will forgive me I haven't posted any support for a longtime and wasn't a big poster even then.
Now I have to start thinking about med management again, do I need to take a shot or can I suffer thru with something else and save them for later? Where to put the O2 tank and how to explain it to the kids and family (they just don't understand and I'm tired of explaining)
I'm lucky to have a loving and caring wife to help me thru the visit from the BEAST, but it scares her.
Time to get on my knees and pray for forgiveness and help thru next 2 months

Title: Re: Just when I thought they were gone
Post by Karla on Aug 26^th, 2007, 7:57am

I am sorry to hear that you are hurting again.

Title: Re: Just when I thought they were gone
Post by 2late on Aug 26^th, 2007, 9:17am

it really sucks your getting hit again,i also have kids and my 02 tank is in my bedroom away from the kids.positive Pittsburgh vibes coming your way!

Title: Re: Just when I thought they were gone
Post by sandie99 on Aug 26^th, 2007, 10:41am

I'm so sorry that the beast is back in your life. I'm glad that you've had PF time and you'll be PF again.

Now, here's tiny practical suggestion: you said that you're tired of explaining things to your closeones. How about if you'll simply write down what you need from them and then let them read that one?

Lots of PF wishes,
Sanna

Title: Re: Just when I thought they were gone
Post by Guiseppi on Aug 26^th, 2007, 1:59pm

And employ the kids to help with the management. My girls are grown and gone now but they knew how to rig a regulator on an e-tank, get bags of ice then make themselves scarce. If they can help it alleviates some of their frustration and the feeling that everyone is helpless.

You haven't mentioned a prevent? I'm episodic like you, when my cycle starts I do a 2 week prednisone taper while I ramp up on lithium, eventually reaching 1200 mg a day. At that level I block up to 80% of my headaches, oxygen will defeat most of the remainder with my imitrex jabs held in reserve fot the ass kickers.

Without the prevent I'd be jabbing on a daily basis and draining tanks by the truck load. There are several prevents to talk to your doc about. verapamil, topomax are some other common ones.

So welcome back, sorry the beast is back to visit you, the boards always open, hang in there hoping you catch a short run.

Guiseppi

Title: Re: Just when I thought they were gone
Post by ClusterChris on Aug 26^th, 2007, 6:35pm

Shitty news. Think on the bright side, You had over a year pf. Thats good stuff!

With my o2, I have it in the basement where all the kids toys are, Mouted safely of course. I explained to my daughter what it is (son is only 2) and now she loves comin down with me and sqeezing the bag. I dont want them to think its a bad thing I'm doing so I dont want to have to sneak away and leave them wondering what I am doing.

Keep thinkin positive, I always get pretty down in the dumps about it but others here have started to talk me out of that and it really does help.

Best of luck with the battle!

Chris

Title: Re: Just when I thought they were gone
Post by GrandPotentate on Aug 26^th, 2007, 10:48pm

Bummer that they return. But welcome back, there are a lot of folks here to help. I had missed 4 years, but then got whalloped with another cycle right on schedule. I was also only an occasional visitor, but resolved to be more active on the site while PF.

You may want to peruse this site (and OUCH) for info for the family. It is good, but I must confess it even creeped me out a bit when I read it. The bottom line is that everybody gets some thing sooner or later, and this just happens to be our thing. We didn't pick it, but we do need to deal with it. There are worse things...

I resisted O2 for a long time, because it sounded like a lot of claptrap and fuss. But I found a place to set up and be alone, and it has been extremely good for me. The times are unannounced, but brief.

I wish you tolerable hits and a short cycle, my freind.

Jon

Title: Re: Just when I thought they were gone
Post by billyjoe on Aug 26^th, 2007, 11:39pm

I too have the O2 in the basement near the kids toys. My kids are 6 & 8 and I just explained that it helps my headaches. It's no big deal to them. I did hid the Trex injections as I don't want them telling thier teachers their daddy is shooting up in th basement. :)

Title: Re: Just when I thought they were gone
Post by ClusterChris on Aug 27^th, 2007, 7:57am

I hide the trex as well, I just go to the bathroom for a second so they don't even know that I'm doing anything out of the ordinary. Thats all I need is for one of them to find one of my needles and start jabbing it in their leg.

Chris

Title: Re: Just when I thought they were gone
Post by allnight9 on Aug 27^th, 2007, 8:04am

Thank-you everyone for your support. Just knowing that I'm not alone in this is a BIG help.
Here I am at work and getting hit already a bit out of the norm for my cycles but it is a new cycle after all, usally the beast waits till around 930/10. My wife is calling my G.P.Dr. this morning he will want to see me and try to refer me to a new head Dr. I'v been thru 5 of those guys and none of them have been any help. Only 1 had ever seen a patient with CH and he retired shortly after I saw him. 1 accused me of being after drugs and the other didn't know what to do, I pretty much laid out my own treatment for them. That's what my GP Dr. does now, I tell him what I want to do ( usally from this site) and he goes over it and pescribes what I need.
I think I will try the steriods again, It didn't help much last time. I have pretty much resigned myself to just treating the pain as best as possible and get thru this cycle.
BIG THANKS to everyone for their thoughts and suggestions. Please pray for me, I need to take a walk now.
Phil

Title: Re: Just when I thought they were gone
Post by seasonalboomer on Aug 27^th, 2007, 8:50am

Others don't have to understand - including the wife and the kids. Most do understand more than we think they do.

Get the O2 set up -- Get the Imitrex injections and quit making excuses for not managing your CH. In the end, that is what every objection to trying or utilizing tools that help us ends up being... an excuse. You'll figure out where to put it, where to hide it.

My wife doesn't like having the O2 rig out in the open, or really even the guest room closet. So, I hide it someplace easy for me to roll it out from and I am attached to the mask in seconds.

CH sucks. But often our own approach to dealing with them makes them even worse than they need to be. Make your to-do list today and start checking it off.

Scott

Title: Re: Just when I thought they were gone
Post by southwalessunshine on Aug 27^th, 2007, 1:16pm

I don't hide what my meds are for at all from my kids. they're 14, 12 and 5. My older one's are cool and know the drill when the beast comes to visit. My 5 yr old son sits with me in my bedroom when I'm hooked up to the 02. he says he has to look after me incase I get scared, bless. He also knows mummy has to have an injection when her headaches get bad. He has never seen me take them and I store them up high under lock and key, but he hes seen the box they come in and I'm always truthful when I explain I'm taking myself to my room to take one. I think honesty is the best policy as you're doing nothing wrong and if they find themselves alone with you when a CH hits they need to know what to do. My other 2 kids, the 12 and 14 yr olds have read things in the kids section here and try to understand the condition.
Hope you get PF soon x

Title: Re: Just when I thought they were gone
Post by fastfreddy2002 on Aug 27^th, 2007, 4:15pm

sorry to hear that they are back. I have been suffering with CH for almost 15years. My wife did some research and o2 works wonders for me. I just keep it in the closet or the back seat of my car. As for what my friends and family thinks about me carry o2 around better oxygen and the beast gone then watching us suffer.

All the best