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        New Message Board Archives >> 2006 General Board Posts >> Playing it safe (update)
        
(Message started by: Tiannia on Jul 6^th, 2006, 1:44pm)

Title: Playing it safe (update)
Post by Tiannia on Jul 6^th, 2006, 1:44pm

ok saw the Neuro Monday.

We are going to keep my meds the same. Only getting a breakthru HA 3-4 times a month is worth keeping it the same.

Talked to him about the Shadow HA. That is what I am calling them. Getting the sweats, redness around my ear and left side of my face, etc.... all the symptoms of my clusters but not the pain. He said they seem to be beneign. That if I can deal with it, they dont want to push thier luck and raise my Elavil and take the chance of the clusters kicking in full swing again.

I can take feeling like I am in menapause. ::)

Just wanted to let you all know what was up. /huggs

PFDaN.
-Tia

Title: Re: Playing it safe
Post by BobG on Jul 6^th, 2006, 6:14pm

;) Good to see ya. And good to hear the attacks have really backed off.

Title: Re: Playing it safe
Post by Charlotte on Jul 6^th, 2006, 7:03pm

Thanks for checking in. Menopause - we'll talk about that later.

I'm glad your meds are helping somewhat.

Charlotte

Title: Re: P
Post by maffumatt on Jul 6^th, 2006, 7:06pm

I'm glad your catching somewhat of a break, lets hope you can catch a total break soon. I cluster is to many.
Matt

Title: Re: Playing it safe
Post by Charlie on Jul 6^th, 2006, 8:38pm

Yeah.

Nice to hear from you and that things have evened out a bit. Keep posting kid. http://www.mzon.ru/public/kuzya/fluder.gif?SSImageQuality=Full

Charlie

Title: Re: Playing it safe
Post by Tiannia on Jul 7^th, 2006, 10:46am

I'm working on it. Getting slowly back into the boards. But damn it can take all day to catch up on posts. So I spot read. One here and one there.

Any break is worth it. I know that people dealt with them a lot longer then I did. But after 3 years 3-8 a day, and only having the Trex shots to fight it, 3 -4 a month is huge.

I know that some people got Elavil to break thier cycle. The 3 days I was off the Elavil, granted I did not slowly back off it just my script ran out, I got slammed and nothing could break a HA and I had to ride thru it. AFter the 3rd in one day, I broke down and told my husband that I cant go back to this. That I'm not strong enough to fight them daily anymore. I'd rather die. :'( I feel like I am weaker for not feeling the pain everyday. It is scary, if the meds stop working, it just scares the shit out of me.

Title: Re: Playing it safe
Post by Richr8 on Jul 7^th, 2006, 11:11am

on 07/07/06 at 10:46:12, Tiannia wrote:

I cant go back to this. That I'm not strong enough to fight them daily anymore. I'd rather die. :'( I feel like I am weaker for not feeling the pain everyday. It is scary, if the meds stop working, it just scares the shit out of me.

Tia,

We have all been there time and again and in fact we do make it through. I will agree that as I get older each cycle seems harder to take, but I rememebr all of the other things that make my life worthwhile whether it be family, friends or the contributions I can make here. I'm not sure why or how, but when I am in cycle after every Kip 8-10, I always believe that it wiill be my last for this cycle, and somehow that keeps me going. Also, the folks and support found here are a tremendous help in your darkest hours. Take advantage of that and come here for support and advice when things look there worst and I am sure someone will step in with just the right words to get you through.

Your in my thoughts. Hang in there.

Title: Re: Playing it safe
Post by Tiannia on Jul 7^th, 2006, 12:19pm

Thanks Rich. I know that I can make it. And if it came down to I I would fight every damn hit and get thru.

I think that it was harder for my husband to see me in that type of pain again. And he could not do anything but hold me for a few minutes then I would freak and say dont touch me and I'd go run into a corner and pound my head against a wall.

I have never been anything other then chornic until now. I always felt that it would drive me insane to be episodic. To not know when they would start again. To wonder if you where going to get a pass until next year or the next. I think that is why I can deal with the shadow (silent) HA. At least I know that I am still getting them, granted with out the pain. But I know that it is still there.

I read this and it sounds sadistic, to say that. But it is a comfort level for me. Maybe I am crazy. :-/

Title: Re: Playing it safe
Post by Richr8 on Jul 7^th, 2006, 12:21pm

Tia,

Ave you tried Oxygen for the shadows? It works very well for me in most instances.

Title: Re: Playing it safe
Post by Tiannia on Jul 7^th, 2006, 2:03pm

O2 is one thing that seems to besomething that doctors will never prescribe for me. No matter how many times I have tried. My husband (with endless debates here about it) will not agree to me using Welders O2. So I get thru with what I can. Hot or cold showers are different times one or the other help more. Ice, whatever. not something I can do at work really easily. As at least 50% of my day is spent in my car or at submittals at the municipalities all over town.

Title: Re: Playing it safe
Post by KingOfPain on Jul 7^th, 2006, 3:05pm

on 07/07/06 at 14:03:46, Tiannia wrote:

O2 is one thing that seems to besomething that doctors will never prescribe for me. No matter how many times I have tried.

Find a new Doctor that WILL!

>:(

Title: Re: Playing it safe (update)
Post by Linda_Howell on Jul 7^th, 2006, 3:11pm

Quote:

My husband (with endless debates here about it) will not agree to me using Welders O2.

Find a new husband...jk. Educate him hon. It's funny to me how people who don't have to have this pain...seem to have very strong opinions on how to handle it, or should I say NOT handle.

Welders 02 is purer than Medical 02.

Linda

Title: Re: Playing it safe (update)
Post by seasonalboomer on Jul 7^th, 2006, 3:44pm

Tia,

I'm in agreement with Linda here. But most importantly, it is critical that you become the boss of your treatment. A doctor is "hired help" as far you need to be concerned. He does what YOU want him to do, not what he feels like doing. YOU're the boss here.

And as for hubby. I'm sure he's sweet and supportive. And hugs are nice and all that, how about having him demonstrate his supportiveness in learning how to get you an O2 rig. The payoff for him? Maybe he'll start getting more of what he wants, again, when he begins to open his mind about whether welders oxygen is something he doesn't want to deal with.

Be your own boss on this stuff Tia, don't let others let you remain in more pain than necessary.

Have a great weekend.

Scott