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        Supporter's Corner >> Supporter's Corner >> Boy does it affect me too...
        
(Message started by: Camerooskis_Mom on Feb 10^th, 2004, 9:53am)

Title: Boy does it affect me too...
Post by Camerooskis_Mom on Feb 10^th, 2004, 9:53am

Some of you know me from the Child's corner but this topic is better geared to you great wonderful people.

For 15 months now, we have been fighting this beast as it ravages my 8 year old. Every parent knows they would take it 10-fold on behalf of their child if they could save them from this thing. Because they know so little about CH & kids it has been trial & error.

I've been having my ups and my downs, however, with this new cycle that started in August - I've literally changed. I feel like the portrait of Dorian Grey expressing all the ills, anxiety, pressure, stress and disappointments.

The biggest symptom: I stopped sleeping in October - since December they have been trying unsuccessfully to come up with a drug cocktail to at least let me sleep. (The idea - if I sleep, the rest of my life has a chance of balancing itself out). I've had drugged induced HA, zombified for (3) days (including the druel). They have tried just about every Anti-anxiety & Anti-depression meds & have had some very severe side effects. I'm done with.

The weird part: I am really OK. I just can't shut my mind down enuf to sleep - classic generalized anxiety disorder. I've read about some exercises & relaxation techniques but was wondering if any of you had some good old fashioned advice. (That glass of red wine at nite helps me sleep for an hour :-) )

Thanks in advance for your support & suggestions.

Laurie

Title: Re: Boy does it affect me too...
Post by TxBasslady on Feb 10^th, 2004, 11:15am

Gosh Laurie.......
You must have nerves of pure steel! I am in awe.

Just knowing that you have that precious little boy who suffers from CH totally breaks my heart :'(

Being a Mom, and a grandmother, I can see why you can't sleep. I am sure that your mind NEVER shuts down enough for you to get some rest. I have no magic potions to tell you about......but I want you to know that you and Cammie will forever be in my mind and heart.

I am certain that acceptance of this beastly burden is a total impossibility. Noone should have to suffer.....but for an 8 year old to suffer is just NOT acceptable. I wish you could package up his pain (and yours) and send it to me. I would gladly take this pain.

I suppose you are going to have to work on a mind-set. Someway you will have to try and let this stress go long enough to get some rest. I am not sure how you will accomplish this, but I can see from what you say, that the drug induced sleep does not work. Maybe you just have to work on the state-of-mind.

Damn, I wish there was something I could do.

Always know that we are with you. You are not alone.

My thoughts and prayers go out to you each day....

Wishing PF vibes for Cammie....and some much needed rest for you, Laurie.

Love to you and Cammie,

Jean

Title: Re: Boy does it affect me too...
Post by Margi on Feb 10^th, 2004, 12:30pm

Hi Laurie,
I know I sound like a broken record here....but I'm gonna campaign yet again for that good old hot bubble bath. It is actually a chemical reaction that helps calm you down and, as your body cools - the melatonin levels rise and therefore promote sleep.

Problem with alcohol before bed is yes, it does have a temporary sedatory effect but it also will wake you up after a short while, too (as you say in your note). If you can stand it, try warm milk :P

When I can't sleep, I take a couple Benadryl, have a hot bath and I'm asleep usually within a half an hour for the entire night. Have you tried Benadryl?

I firmly believe that unless you live with a clusterhead and witness the hideous pain they endure and feel your own powerless terror - one can't really relate to what a supporter goes through. Laurie, my hat's off to you - I can't imagine what you go through as a mom in this regard. For me, it's my husband - but he's got a pretty good handle on the mechanics of clusters by now. Your little guy is just an innocent lamb. :'( Your strength amazes me.