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Topic: There are alot of new people here..... (Read 1444 times) |
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jonny
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There are alot of new people here.....
« on: Apr 1st, 2003, 6:47pm » |
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And some of them If not most of them have been hunting for the right meds and coping tricks.
My question is:
What works for you and for how long, what did work but quit (How long did it work), are you chronic or episodic.....Any tricks work for you, heat, cold, excersise. jumping in a cold lake bareass.....you get where im going with this.
Me?
Got 02 10-12 yrs ago with no instructions so it never worked. When I got here I was taught how to use it and can kill the beast almost every time.
Meds:
Lithium and Verapamil everyday for over 12 years and it still stops 80% of my HA's, why?....I dont know why this combo has worked so long for me and not other chronics.
What say you folks?
......................................jonny
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Melissa
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Re: There are alot of new people here.....
« Reply #1 on: Apr 1st, 2003, 6:50pm » |
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on Apr 1st, 2003, 6:47pm, jonny wrote:
pregnancy ;D
 Mel
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WendyHowe
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Re: There are alot of new people here.....
« Reply #2 on: Apr 1st, 2003, 6:55pm » |
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Hello to all the new people
Hello new man SPUDMAN -great name
I'm quite new too and there are fantastic people who will help you loads here.
Me, newly diagnosed episodic.
Imigran to abort CH
Zomig to abort occasional migraines
Constantly refreezing flannel in white wine chiller sleeve (stays cold for ages) on my temple while I scream until pain subsides.
Not allowed O2 because pillock doctor thinks I will blow myself up (I smoke)
Wendy from the UK
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brain_cramps
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Re: There are alot of new people here.....
« Reply #3 on: Apr 1st, 2003, 7:05pm » |
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episodic for 20yrs (1 to 2 months - usually every 18 months)
1st 10 yrs : just about every possible med!!!
(a LOT of demerol)
Next 5 yrs : Imitrex pills
Last 5 yrs : no meds (damn taxman!!!)
Other:
sleep upright with windows open
LOTS of fresh air
NEVER skip meals
LOTS of small meals, FEW big meals
not getting stressed 
grant
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jonny
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Re: There are alot of new people here.....
« Reply #4 on: Apr 1st, 2003, 7:06pm » |
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on Apr 1st, 2003, 6:55pm, WendyHowe wrote:
Not allowed O2 because pillock doctor thinks I will blow myself up (I smoke) |
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LOL ;D
I smoke 4 packs aday and I have a tank 10 feet from me.
Pillock?
.......................................jonny
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Slammy
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Re: There are alot of new people here.....
« Reply #5 on: Apr 1st, 2003, 7:06pm » |
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Leave it to Jonny to remind us what this board is all about and bring us back to the proper perspective...
You da King!
Me? I have been episodic for 27 years ( I was 14 years old). Been to every pain specialist, accupuncturist/pressurist, chiropractor, nuro, Shaman, witch doctor, in the South Bay without any success. I took prednisone, maalox, histamines, anti-histamines, suppositories, ex-lax, midol, vicodin, elavil, GHB (  )
Until I found this board in 1999. Since then, I have found what works for me , the best is:
Cafergot to abort during waking hours. Oxygen and Imitrex shots when I wake up in the middle of the night with a king-fuck-master 10 humbdinger, and Verapamil 360 mg a day as a preventative.
Thanks to this mix, and the brothers and sisters of this mb, my quality of life is affected minimally by this friggin demon!
Slammy 
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That's it! Everyone out of the pool!
" Everytime I try to get out, they PULL me back in! "
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amber
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Re: There are alot of new people here.....
« Reply #6 on: Apr 1st, 2003, 7:24pm » |
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Good idea jonny
Have had headaches for 8 years now. Up until July, imitrex worked "enough" (the pill form) to not complain. Up until july, we figured (lame ass doctors) that I had hormonal migraines. Don't even get me started on how I may or may not fit the bill for that one.
Since july I have been daily with maybe one or two days of break. Wake up with them in the middle of the night, and usually have them most of the day with very little "down time". I have tried:
Imitrex
Maxalt
Amerge
Zomig (all in pill form)
Prednisone (just made me feel like a coffee addict)
DHE treatments for 3 days.
Narcotics (LOL)
Depakote
Naproxen
Topamax
indomethacin
baclofen
migranal nasal spray
verapamil (made my headaches even worse, after 3 days I was told to stop taking it).
sansert (couldn't take it because of another condition)
I have a feeling I have not been put on lithium for the same reason as the sansert issue. I am trying oxygen tomorrow. Will be trying shrooms this summer.
A hot shower can really help but won't always do the trick. It's best if i can get in there and really "shampoo my hair"...as in ...massage my scalp big time while the hot hot water is running. It's a circulation thing. Walking doesn't make it feel THAT much better but often I will get some relief.
Being bitchy feels good too, for some reason 
So basically, I'm the cleanest bitchy person with the shiniest hair you've ever met 
Amber
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don
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Re: There are alot of new people here.....
« Reply #7 on: Apr 1st, 2003, 7:27pm » |
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Episodic 26 years
Med protocol that works
240 Mg verapamil per day
1/2 imitrex injection for breakthrough attacks.
Water, water, water
Dramaine for sleep aid
Prednisone taper when cycle wont break
In Patient IV DHE + benedryll when it REALLY wont break
Meds that dont work
All the rest and I've tried them all
Med that helps me cope
clusterheadaches.com
headachesupportgroup.com
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| « Last Edit: Apr 1st, 2003, 7:30pm by don » |
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tanner
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Re: There are alot of new people here.....
« Reply #8 on: Apr 1st, 2003, 7:42pm » |
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hi all ,
i'm chronic/ varient. i get the ha's everyday ususally most of the day or night with no set pattern.
the varient part is because i first went chronic in 85 and stayed that way (everyday) until 92 i think. anyway i suddenly became pain free and stayed that way until july 2000 and have been daily again since then . same side same intensity same downword mental progression.
none of the drugs mentioned above have worked for me. i take ambien with alchohol (which has never been a trigger for me) when i just can't take it any more(like tonight) it spaces me out amd somehow that is better.
i then go out and do dumb things like canoe or kayak at night places i don't know and havn't been before,but i am still here so i guess its the challenge that i need to make me focus less.
i'm currently trying neurontin in ever increasing doses and hoping for something.... who knows
ya can't go down easy! tim
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suzy617
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Re: There are alot of new people here.....
« Reply #9 on: Apr 1st, 2003, 7:44pm » |
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Episodic going on 22 years.
Med free 19 years.
What works: imitrex
Next cycle will try imitrex, 02 and what looks like depauote on the rx as preventive.
anyone have a clue what this is? I tried looking it up and cant find any info. Maybe i'm just not reading it right.
Oh yea, sometimes marijuana for the shadows.
suzy
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2late
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Re: There are alot of new people here.....
« Reply #10 on: Apr 1st, 2003, 7:45pm » |
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had 'em for 5 year's now diagnosed chronic at first, but now that i found this board i know i'm episodic. different things have worked for me as far as preventatives, my doc switches meds if i'm in a bad way and keep on his shit, the one thing that remains constant is verap, i'm 1-week into neurontin just went up to 1200mg. a day,hopin' to get relief from this cycle! abortives 02 & trex shots. .........Jack
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Roxy
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Re: There are alot of new people here.....
« Reply #11 on: Apr 1st, 2003, 7:45pm » |
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Chronic for a year and a half, 14 mths. with no meds what so ever.
First Dr. told me it was tension headaches, patted me on the head, put me on topomax. Stayed on that for about 6 mths., didn't do anything for the head.
GP told me she thought it was ch's, put me on indomethicin, stayed on that for about 2 mths., didn't do anything for the head.
Started the welding 02 on New Years Eve.....made a world of difference. It will help knock back the ones that come during the day, but they always return after about an hour.
At the end of Jan. my new neuro started me on verap (360mg a day), imitrx, maxalt, cafergot.
Verap doesn't seem to be doing anything, I upped it to 540 a few weeks ago, and it's still not helping . Since I started it, I seem to getting hammered more than ever. Maxalt is like eating candy.....no help. Trex shots will knock one out in about 8-10 minutes. I use 2mg per shot. Nasal sprays will sometimes work in a pinch, but I usually have to use two of them.
Still looking for that wonder drug that will let me get through a few days PF......anyone found it yet?
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I used to have a handle on life....but it broke.
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K.
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Re: There are alot of new people here.....
« Reply #12 on: Apr 1st, 2003, 8:02pm » |
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Thanks Jonny....I like this so much more than all the politics that have taken over the message board lately.
Suzy....it's "depakote". My neuro wants me to try it too, she said she has had good luck with her cluster patients but I haven't agreed to try it yet.
I also have tried every "abortive" drug imaginable for CH relief. I'm episodic and have been for 18 years. I haven't had much relief for the last 3 years so am thinking I may be going chronic. I'm not ready to accept that yet.
What really works for me: Verapamil 480mg daily as a preventative, O2 as my best abortive and imitrex injections if I need them. Sometimes if the shadows are really persistent then I use the imitrex 50mg pills.
How I cope?
All of you wonderful people on here!
Karen
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jonny
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Re: There are alot of new people here.....
« Reply #13 on: Apr 1st, 2003, 8:14pm » |
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on Apr 1st, 2003, 8:02pm, K. wrote:Thanks Jonny....I like this so much more than all the politics that have taken over the message board lately.
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So do I Karen, it helps me come up with better topics to get away from that crap.
.............................................jonny
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thsa/simon
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Re: There are alot of new people here.....
« Reply #14 on: Apr 1st, 2003, 8:16pm » |
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Episodic for 18 years
tried
sansert
caffergot
prednisone
depakote
verapamil
imitrex
frova
O2
demeral
a myriad or barbiturates
percoset
few other things I cant think of right now
Last set was on
depakote twice a day
frova once a day and on breakthroughs
percoset for the shadows.
was having too many breakthroughs but they eventually went away.
Next set the plan is
prednisone ( I had fairly good luck with that time before last)
frova
long story short, I still havent found the magic pill. O2 is ok, but I move to often and the army wont move it so I dont keep it around.
simon
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brain_cramps
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Re: There are alot of new people here.....
« Reply #15 on: Apr 1st, 2003, 8:17pm » |
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on Apr 1st, 2003, 8:02pm, K. wrote:| Thanks Jonny....I like this so much more than all the politics that have taken over the message board lately. |
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ditto!!! good topic jonny - more to the point of the MB
grant
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achinghead
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Re: There are alot of new people here.....
« Reply #16 on: Apr 1st, 2003, 8:39pm » |
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me... well.. 16 yrs eposodic.. usually every 12-28 months. longest period... 3 months.. (of total hell)
tried: prednisone- worked but swelled up like a tick
verapamil- didnt go well with me
amitryptaline- worked.. but made me tired and blurred vision, bad taste
Imitrex--- all 3 forms
man.. i cant remember all the things ive tried.. sorry guys..
needless to say ...... if they woulda worked id still be on em.
what works best for me now are the trex injections.. just trying 02 today.. hopefully that will work too. Tried Zomig this past weekend.. I think it aborted 2 out of the 4 I tried.
Sorry guys.. thats about the best I can do.. Having a real bad cycle(6-1/2 weeks now). If you want to know anything else... all ya have to do is ask.
One more thing.. Ive said it before and Ill probably say it many more times.. THANKS to all that have helped me here... you guys dont know what it means to me to be able to interact with fellow CH's
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domm
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Re: There are alot of new people here.....
« Reply #17 on: Apr 1st, 2003, 8:39pm » |
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Thanks Jonny for bringing this topic back in the conversation.
episodic with 2 year remissions (I'm one of the lucky ones)
O2 (after I learned here how to use it right) to abort
Imitrex pills - to abort and kill shadows
Verapamil - to prevent
Tried but didn't work or help
Elavil
Robaxin
every OTC available
antihistimines
PFDANs to all
domm
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catlind
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Re: There are alot of new people here.....
« Reply #18 on: Apr 1st, 2003, 9:07pm » |
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Episodic 3 years
Things tried: (from most drastic to least)
Hysterectomy
temporal artery biopsy
prednisone (worked, but I like the tick description, still trying to lose the pred weight)
inderal
amitryptalline
noratryptalline
indomethacin
B complex vitamins
Magnesium
phenergan
dramamine
oxycodone
hydrocodone
percocet
demeral
morphine
nubane
feverfew
immitrex
celexa
prozac
depakote
norvasc
maxalt
oxygen
all the OTC's including ketoprophin
propanalol
aspirin
naproxen
verapamil
oxygen
stadol NS
I think that's all of them. Right now I'm using verap 240mg daily for preventative, stadol and O2 for abortives, (O2 works for about 60% if I get it right at the beginning) Maxalt worked on the last one I got but I can't get anymore.
One of these days someone will let me use the damn drugs that work instead of continually resorting to narcotics.
I forgot about baclofen and other muscle relaxants.
Cat
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| « Last Edit: Apr 1st, 2003, 11:07pm by catlind » |
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Virginia
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Re: There are alot of new people here.....
« Reply #19 on: Apr 1st, 2003, 9:28pm » |
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First 14 years episodic.
Last 4 years chronic.
In the early years, prednisone worked as an abortive. Nothing worked as a preventative. DHE 35 also worked in the ER as an abortive.
Have spent the last 2 years without insurance so don't have any meds. Currently taking high doses of motrin & alleve every 6 hours or so (don't ask...).
Since I started consuming massive quantities of water (a gallon a day) I find that I have had less KIP 10's.
If I ever get insurance again, I will try jonny's combo of oxygen, lithium, verap.
Virginia
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The Clusterhead formerly known as 9erfan.
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fubar
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Re: There are alot of new people here.....
« Reply #20 on: Apr 1st, 2003, 9:29pm » |
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Hello, my (nick)name is (fubar)Shawn, I’m 37 and I'm a clusterhead. 
Been episodic since about 20. Had no specific diagnosis until I was 32. Been ‘in cycle’ since November 2001, but I didn’t start to panic about it until a few months before the time I found this board. There is understanding here I have not found anywhere else, and I love this place.
Under the “What works” column:
Keeping it at bay even though you know it will hit (winning the battle, not the fight): Anything high stress, or anything requiring intense focus. Adrenaline.
Oxygen. Plenty of pure oxygen works wonders. It’s almost better to not fight it coming on, let it grab you then smack it down with the oxygen.
When I can’t get O2, I use the trex shots. Maybe 45% effective, depending what I’m doing.
Prevention: Currently on Verapamil 720mg day, and Depakote . I have a PF day every now and then. Still looking to string two of them together.
Triggers: The clock. The beast is pretty damn reliable, shows up early afternoon, evening, and when ever I try to fall asleep on him.
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Aussie
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Re: There are alot of new people here.....
« Reply #21 on: Apr 1st, 2003, 9:48pm » |
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Nice change of pace, back on the CH track.
From the pictures I've seen of you and reading some of your posts Johny, you are as mad as a cut snake but you always come up with the goods.
I'm episodic and have been for 16 years, been prescribed Pred. and Verap. but have chosen not to take at this stage. I only get walloped at night and maybe only suffer for 1 month each year, so I revert to cold showers, ice packs and alot of self control.
I admire all of you Chronics who have to fight this every day. I would't wish this upon my mother in law.
Steve
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Jarvis
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Re: There are alot of new people here.....
« Reply #22 on: Apr 1st, 2003, 9:58pm » |
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I have suffered 27 years with CH. Averaging 8-12 attacks a day. My last cycle was 6 months. the previous cycle lasted 3 years. several cycles prior to that were about 4 months. Prior cycle 6 months, before that was 3 years. So though it seems my cycles are non conforming they still are. Just live my life in a wider circle I guess. I've tried all of the meds listed above with little or no relief. However prednisone at high dosage will give me a short vacation starting at 80. Also tried a lot of illegal meds except the shrooms for clusters. I do take ephedrin as a short term abortive when neccesary and this "helps" a good % of the time in the daylight hours. Otherwise I use no medications at all........... My primary treatment for an attack is pushups at the first sighn and the endorphins created (I think) will greatly alleviate the pain and occasionaly abort a full on attack. I have also tried a lot of alternatives, acupuncture, diets, chiropractics, head banging, altitudes, vitamins, herbs, etc.. to no avail.
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Mikey
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Re: There are alot of new people here.....
« Reply #23 on: Apr 1st, 2003, 10:08pm » |
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Chronic here for 5 years now with no breaks at all.
things that have helped me but don't anymore.
Lithium
Prednisone
Sansert
Topomax
Neurontin
These things helped for very short periods of time.
these next things did not help at all.
Amytryptaline
Inderal
Clonapin
Magnesium
Prozac
Propranalol
These things help for brake throughs.
Imitrex Inj. (the full 6 mil)
Imitrex Nasal spray 20mg
O2--Would help, and did for a very long time, but don't anymore because of some other problems that i have.
Stadol NS, mainly for shadows.
Maxalt
Percocet 7.5mg
These next things i use for preventives at the present.
Verapamil 720mg a day.
Depakote 1,500 mg a day
MS-Contin 90mg a day
I've tried most everything and there is a good chance that i have missed something. If i did, it must have been no good to me anyway!
For all the newbies out there, I hope that you find something that fits you and helps alot.
Lots of luck to you and PFDAN to you and everyone here on the MB!
Mikey,
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I love to ROCK very HARD!!!
CHRONIC and going crazy!! Want to come too?
Hope for PFDAN, peace and safety to you all!!
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Jarvis
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Re: There are alot of new people here.....
« Reply #24 on: Apr 1st, 2003, 10:27pm » |
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Fu wrote- "Under the "What works" column:
Keeping it at bay even though you know it will hit (winning the battle, not the fight): Anything high stress, or anything requiring intense focus". "Adrenaline."
That too. I have bypassed some pretty heavy hits in adrenaline situations. I once got hit skiing. was at the top of a hill thought about waiting it out as I had never skiied this run. I went for it under a full blown attack with drops of 30-50 ft. Instantly, as it was do or die the attack disappeared. Thats the extreme but I can recount multiple times like this. I also need that stress and have to find concentration. Not for everyone.
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