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   Author  Topic: What I'm trying now  (Read 12595 times)
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Re: What I'm trying now
« Reply #100 on: Aug 15th, 2005, 10:56am »
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Let's hope this does it for you!!! sayyes
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Re: What I'm trying now
« Reply #101 on: Aug 15th, 2005, 1:57pm »
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I'm really pulling for you, Nani, and I'm glad that you are keeping us posted on your progress.  You are really helping a lot of us with your information. hug Pat
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Re: What I'm trying now
« Reply #102 on: Aug 15th, 2005, 4:24pm »
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Nani,  
 
Your fight is inspirational.
 
Javier
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Re: What I'm trying now
« Reply #103 on: Aug 16th, 2005, 9:56am »
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Glad to see progress.  Both you and clusterchuck have been an inspiration for me.  I am gonna give it a go next cycle.  Thanks for keeping us informed.  It makes such a difference.  Keep fighting!
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Re: What I'm trying now
« Reply #104 on: Aug 16th, 2005, 10:48am »
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Nani,
 
It's been a while since my last post - but a lot of that's down to the medication route I chose to take giving pf days.  Just hope this treatment works for you as well as it has for a namby pamby episodic sufferer like me.
 
Huge congratulations and respect for all your superb and unequivocal support on the board to all suffrers, and can't forget too those who are supportive of alternative therapies - Pinkfloyd.
 
This is the one site that when a CH sufferer finds it, it will change their life.  
 
Guess I'm one of those 'case studies' for whom mushrooms has really given me a rod to beat these clusters properly. But then it's a bit like jumping off a very tall building (so far so good, so far so good then back to earth).
 
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Re: What I'm trying now
« Reply #105 on: Aug 16th, 2005, 1:33pm »
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Thanks, all. Smiley
I'm still feeling pretty good. A few "twinges", some with a bit of pain, many without any pain. I'm mostly "empty" headed, too.  
Please understand that I don't think chronic is any "worse" than episodic. It ALL sucks. The reason I like to post my progress, is that I'm one of those tough cases that traditional meds don't help much. If they do work, it's almost certain that they will stop working eventually. I expect that my alternative battle is not over yet. I am looking forward to getting to the point of only maintenance dosing. Even if it's once a month, that would be great. I was getting pretty tired of the bucket o' pills I was having to take everyday.  
I strongly encourage folks to look hard at this treatment. It has worked wonders for many. And, for me at least, the fear of the "tripping" effects has not come to fruition.  
 
pf wishes and hugs, nani
« Last Edit: Aug 16th, 2005, 2:13pm by nani » IP Logged

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Re: What I'm trying now
« Reply #106 on: Aug 16th, 2005, 2:50pm »
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on Aug 16th, 2005, 1:33pm, nani wrote:
Thanks, all. Smiley
I'm still feeling pretty good. A few "twinges", some with a bit of pain, many without any pain. I'm mostly "empty" headed, too.

Congrats on the continued success! I assume by mostly "empty" headed you meant that as a good clear head feeling.
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Please understand that I don't think chronic is any "worse" than episodic.

Episodic here, so I beg to differ...year round with this stuff...OMG.
Quote:
the fear of the "tripping" effects has not come to fruition.
For some reason nani seems to have a high tolerance for it....so no trippy effects.  
Also....for many folks.....small doses = one or maybe two beers, have proven to be very effective.  
 
Also better to remain med free as it is theorized some meds block the good the alt. therapy provides.  
 
Just think.....with a little fungi or seeds, and O2 as an abort for the occasional break thru's and/or help with detox.....you can toss the bucket O' pills down the drain!  
 
Please keep reporting Nani....be a thread hog!!! Grin
SteCo  
 
 
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Re: What I'm trying now
« Reply #107 on: Aug 16th, 2005, 3:17pm »
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Ditto on all SteCo wrote.
 
Glad you're feeling better Nani!
 
Bob
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Re: What I'm trying now
« Reply #108 on: Aug 18th, 2005, 9:09am »
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How's it going Nani?
 
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Re: What I'm trying now
« Reply #109 on: Aug 18th, 2005, 10:19am »
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Well, after my last dose (Sun) I had 2 very good days. Not 100% PF, but close. Late yesterday morning another batch of storm systems moved in. (I'm probably the only person in the scorched desert of NM to pray it "won't" rain  Embarassed  Wink Well, it was also very hot. I shadowed a lot. First, I tried a SPUT, it didn't help. Then I tried a Red Bull, also didn't help. Finally I gave in and took an Excedrine migraine, it helped a little. So far, today has been clear and PF.  Smiley
So, I'm in a holding pattern. Awaiting advice from the experts to see what to do next, IF I need to dose again.
 
ever optimistic and fully enjoying the pf time I get, nani
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Re: What I'm trying now
« Reply #110 on: Aug 18th, 2005, 11:10am »
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Keep going Nani.  We're with you!  Vibes and hugs coming your way!
 
Sandy
 
 hug hug hug
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Re: What I'm trying now
« Reply #111 on: Aug 19th, 2005, 8:38am »
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I'm watching too, Nani.....Keep posting....I still have some seeds for when the time comes.....for when the bell tolls......Since the last cycle finished last May, I am probably good for awhile.....BUT.....
 
I've been decreasing the Zonegran.....ever so slowly....just getting prepared....I'm down to 100 mgs.....down from 250mgs.....
 
Blessings!
Karen
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Re: What I'm trying now
« Reply #112 on: Aug 19th, 2005, 9:40am »
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Well, these storm fronts are killin' me.  Sad  
Thank goodness, I have not had any hits, but the shadows are quite bothersome. So, since I can't avoid my weather "trigger", I will dose again tomorrow night with 6 HBWR seeds. I'll keep you posted.  Smiley
hugs, nani
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Re: What I'm trying now
« Reply #113 on: Aug 19th, 2005, 1:02pm »
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Yeah, I hear you Nani, my brain has become a barometer.
Dosed with 3 seeds 2 days ago... relief is on the way!
Be well and good luck!
Rex
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Re: What I'm trying now
« Reply #114 on: Aug 20th, 2005, 10:11pm »
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Well, I dosed tonight with 6 HBWR seeds. Again "no effect" ... I'm really beginning to wonder where this high tolerance is coming from LOL...  
I am, however, feeling some discomfort in my chest and left arm. I'm not overly concerned, because it's not terribly painful and it comes and goes. It does concern me enough, though, to consider fewer seeds, or going back to mushrooms should I need to dose again soon. I cut my verap (for high BP) down to 240 mgs a day for the last 2 days also. Will resume my regular dose of that tomorrow. I've shadowed a little, nothing major. I am prepared for any hits or bad shadows that might occur. I'll keep you all posted. Thanks again for your concern and encouragement. hugs, nani
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Re: What I'm trying now
« Reply #115 on: Aug 23rd, 2005, 8:19am »
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2 PF days.  Cheesy
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Re: What I'm trying now
« Reply #116 on: Aug 23rd, 2005, 8:59am »
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Absolutely GREAT news Nani!!!! So glad to hear Smiley Smiley and happy for you!
 
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Re: What I'm trying now
« Reply #117 on: Aug 24th, 2005, 5:38pm »
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Hello Nani, just wanted to stop by and see how you were doing, glad to see that you are getting some PFDN"S. My cycle has finnaly ended. Its been about 2 weeks with no attaks. towrds the end I was doing the hanging upsidedown...not sure if that helped or not but I was also drinking white grape juice and eating lots of fish...still am just to be on the safe side. Anyway I just wanted to see how you are and say hi Sweetie! Keep in touch, I will!
Chris
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Re: What I'm trying now
« Reply #118 on: Aug 24th, 2005, 5:53pm »
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Chris, I'm so glad your episode is over! Hooray!
You's better keep in touch, homie...I'm going to.  Smiley
 
Yesterday was also PF.   Smiley  That's 3 in a row again. I've had some shadowing today, but nothing major.  Smiley
Gettin' my life back...  Smiley
hugs, nani
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Re: What I'm trying now
« Reply #119 on: Aug 24th, 2005, 8:54pm »
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Yay, Chris!
 
 
Go Nani !!Smiley  hug
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Re: What I'm trying now
« Reply #120 on: Aug 26th, 2005, 4:18pm »
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Still about 99% PF.  Smiley
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Re: What I'm trying now
« Reply #121 on: Aug 27th, 2005, 2:49pm »
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I've just spent the last 5 hours out in the hot sun at a soccer tournament.  Undecided  I hate tournaments...they make me wish that the kids suck so I can go home.  Cry My 12 year old's team won the damn thing. LOL...
Anyway...
Once I got home, out of the sun and heat and into the A/C, I had a very tiny, 5 minute k2 hit. Cheesy
 
This is the first year in 6 years of soccer that the tournament didn't kick my ass. I'm almost looking forward to the rest of the season. Like I said before...gettin' my life back.   Cheesy
hugs, nani
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Re: What I'm trying now
« Reply #122 on: Aug 27th, 2005, 8:22pm »
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Looks like you are gettin your life back.........I'm so glad for you!
You most certainly deserve it!!!!!!!Smiley
 
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Re: What I'm trying now
« Reply #123 on: Aug 27th, 2005, 8:28pm »
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Good for you Nani and it's great that you're keeping everyone else updated.  It sure does give hope to a lot of folks.
 
Keep up the good work.  I look forward to you being able to post about your PF time stretching out to week,then months, and on and on.
 
Take care
Carol
 
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Re: What I'm trying now
« Reply #124 on: Aug 27th, 2005, 9:39pm »
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on Aug 27th, 2005, 2:49pm, nani wrote:
Like I said before...gettin' my life back. Cheesy
hugs, nani

 
Nice, that's great to hear!
May it never return.
 
Jim
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