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123 Days PF And I Think I know Why (Read 447959 times)
Ken_DFA
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Re: 123 Days PF And I Think I know Why
Reply #275 - Jul 22nd, 2011 at 11:43am
 
Batch,
 
Just wanted to quickly chime in and relate my experience using your regimen.  First off, THANK YOU for your efforts to find new avenues for treatments.  You're helping to improve the lives of others and that is incredible.
 
This year's cycle caught me totally by surprise.  I started the regimen approximately one week into the cycle.  At the same time, my order from Iamshaman  came in and I began dosing with RC on a weekly basis.
 
From the point where I started busting and taking the daily regimen, the severity of my hits dropped by about two K's.  Headache frequency decreased by roughly 25% with each subsequent week.  I went from getting hit twice a day to getting hit once a day and at this point (fifth week in), I haven't gotten a true headache in about 8 days. 
 
Backing up a bit, I cluster-busted my last cycle back in '09 using RC seeds and experienced the same decrease in headache frequency with weekly RC doses.  What I did not experience in '09, however, was the drop in headache intensity.  Even though the hits were dropping in frequency as time wore on, the intensity of the headaches continued to be in the K8-9 range - right up to the end of the cycle.
 
I therefore attribute this cycle's drop in headache intensity to the effectiveness of your regimen.  Likewise, I attribute the decrease in frequency of hits to the RC seeds, because I experienced the same thing in '09. 
 
That's just my gut feeling.
 
So while the regimen didn't instantly kill my headaches as it has for others posting on here, I will definitely put this into the "works" category and start the regimen again as soon as a new cycle begins (hopefully, not for another two years!!!!!).  The ability to knock a hit back from K8 down to a K6 is very significant as far as I'm concerned.
 
With much gratitude,
-Ken
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #276 - Jul 22nd, 2011 at 12:48pm
 
Hey Lawrence,

Thanks for the feedback...  Hopefully the constant shadow will fade to a completely PF response in a week or two.

From reports like yours, it appears that some CH'ers don't respond to this regimen as fast as others.  In stead of a marked reduction in CH frequency and severity or complete remission after 48 hours...  some CH'ers are taking one to two weeks to get the same response.

Exactly why this happens is still unknown, but from the info exchange I had with Dr. Patterson in Australia, it appears the extra time is needed to build 25(OH)D3 levels in the fatty tissues to a sufficient level to allow serum levels to remain constant at a therapeutic level. 

Dr. Lewis also indicated it can take up to a month for 25(OH)D3 levels to build from >100 nmol/L to 150-200 nmol/L when dosing at 10,000 I.U./day.  Accordingly, this would also explain why some CH'ers who skip a dose during the first few weeks experience breakthrough cluster headaches or shadows.  This might also explain why it took a vitamin D3 dose of 15,000 I.U./day for you to start experiencing the benefits of this anti-inflammatory regimen on your cluster headaches.  Once you reach a totally PF response, you may be able to drop back to 10,000 I.U./day as a maintenance dose.

My wife takes 15,000 I.U./day without any adverse effects...  She claims it makes her feel better with a lot more energy.

Thanks again for the update.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #277 - Jul 22nd, 2011 at 2:14pm
 
Hey Ken,

Thank you for the feedback and analysis of your response to the anti-inflammatory regimen.  I'll jump to the point and wager you will not experience a CH cycle next year if you stay on this regimen.  I intend to stay on it for the rest of my life.  My wife also takes it and she doesn't have CH.

At less than 20 cents a day, >80% efficacy and no adverse side effects, it's good for the eyes, brain, bones, heart, lungs...  you can't say that for any of the other CH preventatives...

If you read through my reply to Lawrence, you'll see that it can take a couple weeks and sometimes a little longer build the serum concentration of 25(OH)D3, the vitamin D3 metabolite, up to a therapeutic level.

Hope this helps.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #278 - Jul 22nd, 2011 at 6:23pm
 
I'm on day 5 of this plan and so far no results - still getting 3 or 4 hits at night and occasional, less painful CHs in the day. 

I did want to mention something that my husband's doctor told him recently. He said that he recommends that people only take fish oil from Norway. He said that many fish oil supplements are now coming from China and they can be suspect...sometimes not fish oil at all. 

The person who posted about having an adverse reaction made me think about this. 

I'm still hopeful this will work for me! Stella
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Re: 123 Days PF And I Think I know Why
Reply #279 - Jul 23rd, 2011 at 6:54am
 
Hey Stella,

Thanks for the post.  I share your aversion to food stuffs coming from China...  I did a good bit of research on the source of Omega 3 Fish Oil ingredients.  It turns out that most of the processed fish oil sold here in the US for use in the molecular distillation processing that yields Omega 3 Fish Oil comes from sardines, herring, and anchovies caught off the coast of Chile...

Nature Made is up front on it's assay for heavy metals listing it on the label and as a US firm...  I have no problem with their Omega 3 Fish Oil.  I take it daily...   

From my earlier posts on this page, you'll see that it can take some CH'ers a week or two and for others, as much as a month or two before the beneficial effects of this anti-inflammatory regimen start to manifest.   

It's still a theory at this point and like many of you, I'm still learning about this regimen, but until we get some before and after blood tests, it appears that CH'ers, who have very low 25(OH)D levels, tend to take longer to experience the benefits of this regimen at a dose of 10,000 I.U. vitamin D3/day. 

As 25(OH)D, the metabolite of vitamin D3 is fat soluble and is stored in the fatty layer under the skin, it appears the fat absorbs much of the initial dosing of the serum concentration of 25(OH)D and it doesn't build up to a therapeutic level in the serum to affect CH patterns until the fatty layer is nearly saturated.

Dr. Lewis points out in his paper  "Vitamin D Deficiency: more on diagnosis and management" that I've posted several times in this thread "...For a patient with an initial blood level of 50 nmol/L, a daily dose of 10,000 I.U./day would be required to raise their 25[OH]D level to about 150 nmol/L (i.e. the middle of the optimal range) over 3 months."

A few CH'ers who have discussed this regimen with their physician and had their 25(OH)D levels tested, reported they've been prescribed 20,000 I.U. vitamin D3/day to speed up the process of elevating their serum 25(OH)D.

Once you've been on this regimen for a month or so, the half life of 25(OH)D is roughly three weeks.  What that means is after a month, if you skip/miss a dose, it's no biggie...

Hope this helps and hang in there.  This is a very healthy regimen with more health benefits that just controlling your CH.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Jul 23rd, 2011 at 7:16am by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #280 - Jul 25th, 2011 at 12:20pm
 
Batch et al;
Just a quick update. The night after I posted that I'd not seen any let up as yet, I went through a night with no hits at all!  I rejoiced, not caring if it was the regimen or the end of this cycle.

So the next night I celebrated/tested it, and had a strong rum cocktail before dinner. I got three mega-hits before midnight.   Sad

Last night I skipped cocktail hour and had one glass of white wine with dinner - no headaches all night!  Cheesy

So perhaps it's working or it's the end of this round...I'll stay on the regimen for awhile and then go off and see what happens.  Thanks, Batch!
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Re: 123 Days PF And I Think I know Why
Reply #281 - Jul 25th, 2011 at 1:00pm
 
You're awfully brave to do the booze test one day after a pf day. Most usually wait two weeks.
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Re: 123 Days PF And I Think I know Why
Reply #282 - Jul 25th, 2011 at 3:15pm
 
Hey Stel,

Thanks for the feedback.  If you'll do a little reading on the benefits of vitamin D3 and Omega 3 Fish Oil, you'll find there are a lot of very good reasons to continue with this regimen daily for the rest of your life...  That's what I'm doing and so is my wife...  and she doesn't have CH.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #283 - Jul 26th, 2011 at 2:40am
 
I sitll can't believe it's true. I have been applying Batch's advice for a few years now. I have the best O2 setup I can afford and it works wonders.

When I read about the D3, I thought, how can this work. Well after I had 3 wakeup calls to O2 in the month of May, me and my wife knew it was coming.

I started the program on May 29, 11, and have not been awakened to a CH since. For the last 6 yrs I have had Summer time cycles of 6+ mnths.

Not this Summer !!!!!!            , Don
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Re: 123 Days PF And I Think I know Why
Reply #284 - Jul 26th, 2011 at 5:39am
 
Hi all

Just an update.  I started on the Anti inflammatory regimen around Jul 1st. I have had attacks all 2011 with some in-between PF weeks.  June being particularly evil.

The effect was significant after a couple of days.  I have not been completely PF, but the frequency is radically lower.  KIP scale mark too. 

I have passed the beer test several times. 

Yesterday I had an appointment with my neurologist and we talked about the D3 coctail.  She got very interested. I got a prescription for 5000 IU units. In Norway the strongest OTC units are 400 IU - meaning I have to swallow 25 tablets every day  Undecided No more of that now Smiley

Bottom line: I'm quite convinced this regimen works for me.

I take
3000mg Fish Oil (70% Omega 3), 500mg Magnesium citrate, 500mg Calcium, 10.000 IU D3, 1500mg Taurin, 25mg Zinc
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Re: 123 Days PF And I Think I know Why
Reply #285 - Jul 26th, 2011 at 8:57am
 
Wow Zeit, that's fantastic news. This cocktail is really starting to get people's attention!!! Shocked

Joe
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Re: 123 Days PF And I Think I know Why
Reply #286 - Jul 27th, 2011 at 9:47am
 
Rune, Don,

Awesome news!  I'm very happy for both of you... 

I know how you're feeling and what it's like to wake up from a pain free night's sleep wondering if you're really done with the beast...  You look over your shoulder with a grin on your face like a kid who just found a $20 dollar bill on the ground... 

After a few weeks... you'll begin to realize this regimen is really working and crack an even bigger smile.  From then on you'll just keep on trucking without looking back...  It's a wonderful feeling...

I thought hyperventilating with 100% oxygen was a game changer when I developed the initial procedure for this method of oxygen therapy in 2005 to abort my CH.  It gave me back a quality of life and sense of control I didn't think possible with cluster headaches...  In 2008 we conducted the informal pilot study where more CH'ers tried it with similar results so I knew it wasn't just a one-off lark...  it really works.

I know nothing lasts for ever...  but at this point,  I'm declaring Game Over with my cluster headaches thanks to the anti-inflammatory regimen... 

I've been PF since last October and I'm still on this regimen...  I intend to stay on it for the rest of my life...  A lot of other CH'ers are reporting similar results with this regimen so I'm not alone and this isn't just a one trick pony either...  It works!

I've been keeping a running tally of the results posted here at CH.com, sent to me by email and PM as well as reports from the good people and fellow CH'ers at ClusterBusters who have also given this regimen a try. 

The significant finding so far is the efficacy of this anti-inflammatory regimen is a function of time...  Some CH'ers reported a favorable response in two to three days after starting this regimen while others reported it's taken two to three weeks and longer to achieve the same favorable response.

Although CH'ers who took the complete regimen had the most success, vitamin D3 appears to be one of the key ingredients and it's clearly the long pole in the tent of this anti-inflammatory regimen.

In my exchange with Dr. Peter Lewis, MD an Integrative physician who specializes in the treatment of vitamin D3 deficient patients, he indicated that based on his experience treating vitamin D3 deficient patients, it can take up to three months at a dose of 10,000 I.U./day vitamin D3 to elevate a vitamin D3 deficient patient's 25(OH)D from 50 nmol/L  (deficient) up to 150 nmol/L (middle of normal range).

The fact that this regimen is working well for both episodic and chronic CH'ers is further proof of its efficacy.  I also expect the CH'ers who have not had an immediate response to this regimen will start experiencing a reduction in the frequency/severity of their CH if they continue taking it.

I hope to have an on-line survey up on the Internet in a few weeks for the CH'ers who've tried this regimen and will post the link when it's ready.  Capturing this data in a standardized format will help dig the fly crap out of the pepper...  We'll need the cleanest results possible in order to help generate the funding for a formal clinical study.

Take care,

V/R, Batch


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Re: 123 Days PF And I Think I know Why
Reply #287 - Jul 29th, 2011 at 10:15am
 
Lucas has been pain free since his cycle in the fall- a few twinges here and there, but no new cycle materialized, and nothing that could really be considered a shadow even. His cycles bounce around, sometimes it's 6 months, sometimes it's 2 years between, so it will be a long time before we know for sure with this, but we'll keep at it. I'll keep updating periodically!

Thanks!
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Re: 123 Days PF And I Think I know Why
Reply #288 - Jul 31st, 2011 at 8:20pm
 
I have been checking in to see how others have fared with your regimen, Batch, and I will always credit my breaking of my last CH cycle with this regimen. Being overly cautious, I lowered my intake to 2,000 Iu of D3 a day a month after being PF, and am still taking the Calcium, magnesium and fish oil-and feel great!!  I am looking forward to your survey. Would be awesome to get a real trial where even more people could be helped.
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Re: 123 Days PF And I Think I know Why
Reply #289 - Aug 1st, 2011 at 8:47am
 
Hi Everyone!

I am 5 weeks into a "usual" 12-16 week cycle....Thank you Batch et all for all the info on more natural treatment.  Last cycle I read up on Batch's research on Hyperventilating (sp) on the O2 rather than just sucking at 15 liters.  I bought a higher regulator which came with the bigger bag to hold the precious O2.  I just got the part about STAYING on the O2 for at least 15 minutes rather than just getting the hit taken care of.  I think this has helped with the rebound hits all night long.  I only had one right as I was going to bed and one more 4 hours later....This sure beats one every hour and a half!!!  This cycle I have been reading up on the Vitamin D3 and Fish Oil....Although I do take both, I have started to ramp it up.
I will keep you posted as to my success in beating this beast earlier in cycle.  I sure do love all you guys....and appreciate the support.
Dallas/Fort Worth would be a great place to have another Cluster meeting.....I met a few of you at the last meeting in Dallas....C'Mon back down here...   Wink

Blessings!
Karen
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Re: 123 Days PF And I Think I know Why
Reply #290 - Aug 4th, 2011 at 6:49pm
 
Day 3 of Batch's regime.

I had my first PF night last night.  Cheesy
Not even any shadows today.

According to my last 6 cycles, this should be "hell week" for me with 5-6 headaches a day at a k8-10. I noticed an improvement almost immediately with duration of headache, "K" rating, and frequency of headaches.

I THANK YOU "Batch" for reading one of my posts on this forum and taking the time to send me a personal email (that was so very cool of you). I may have otherwise passed right over this valuable recipe.

I will report back in a few days and changes/ success.
PF days & nights to all of you! I hope to be another success story
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Re: 123 Days PF And I Think I know Why
Reply #291 - Aug 4th, 2011 at 7:47pm
 
I THANK YOU "Batch" for reading one of my posts on this forum and taking the time to send me a personal email (that was so very cool of you). I may have otherwise passed right over this valuable recipe.

Yeah....he does that  alot. Wink

Great news Jenny, senidng hopes and vibes it continues for you.

Joe
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Re: 123 Days PF And I Think I know Why
Reply #292 - Aug 5th, 2011 at 4:01am
 
Hey Jennifer,

Thank you for the kind words...  I'm glad you though enough about the ant-inflammatory regimen to give it a try and so very happy you responded so well to it. 

It's success stories like yours that will clue more CH'ers into finding out first hand just how effective this regimen can be.  Thank you.

Based on the feedback I've received so far, I'm very confident you'll remain pain free.

Take care and please keep us posted. 

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #293 - Aug 5th, 2011 at 11:32am
 
This is like my 4th time trying this regimen since January, and I will try to stick to it more than 5-6 weeks..... Smiley

This time, I switched brand of vitamin D.......

Last night was the first time since March that the beast didn't woke me up after 1.5 - 2 hours of sleep..... I woke up to a start of an attack 5 hours after going to bed.....that felt so strange.... Smiley

I started Topamax about a week ago (added to Verapamil and Divalproex), so I do not know for sure the vitamin D is helping me or not....
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I can't wait to have over 10 posts to tell you all about......nah, I'll keep this as a surprise!
 
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Re: 123 Days PF And I Think I know Why
Reply #294 - Aug 5th, 2011 at 4:48pm
 
ANOTHER PF night! Woo hoo. No shadows today..nothing.
I feel amazing Smiley
xoxo
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Re: 123 Days PF And I Think I know Why
Reply #295 - Aug 5th, 2011 at 9:08pm
 
Hey Jennifer,

Thank you for the update.  It's a wonderful feeling isn't it.

The important thing now is stay on this regimen.  It's not a cure.  That said, I think you'll find this regimen has other healthy benefits after a few more weeks that will convince you to stay on it. 

My wife started taking it when she saw what it was doing for me weeks after it stopped my CH.  She feels better, sleeps better, and has more energy.  She bounces around the house and yard like a kid again. 

When you look at all the other potential health benefits from taking this regimen, it's a no-brainer...  We're on it for life.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #296 - Aug 8th, 2011 at 12:00am
 
Still on my 4000 IUs of Fish Oil, 15-20000 IUs of Vitamin D, Calcium Citrate and lemonade....Been on it about a 7-10 days ( I'll have to check my calendar).  Still getting about 3 hits per night....Still trying to stay on O2 longer (its hard to fight sleep when the pain leaves).  Yesterday was particularly hard as I was getting hit in the middle of the day at a family party about an hour from home.  I didn't bring my O2 but took a Teximet.  It worked but made me fool so weird and not so good the rest of the day.  Still waiting on my Sansert to arrive....sigh.  I have to fly wo Mississippi next weekend with my husband and not looking forward to it.  He is performing a wedding for some friends.  Fortunately the best man lives here and has volunteered to take my O2 with them as they are driving instead of flying.  Such a hassle to do anything or go anywhere.  I guess that is why I usually stay home during this season.

Sorry for the whining....It used to be much worse back in the first couple of years when I didn't have O2 and didn't know what these horrible things were....I've come a long way these 20 years worth of the beast and I have learned most of what I know from you wonderful people...Thank you!
Blessings y'all
Karen
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Re: 123 Days PF And I Think I know Why
Reply #297 - Aug 8th, 2011 at 9:51am
 
Hey Karen,

Please believe me, I know what you're going through.  I went through a similar scenario July - September of last year with airline travel to Zurich, Hamburg, Reno, Seattle and Ketchikan, Alaska. You have the advantage of already starting the anti-inflammatory regimen so have a leg up on what I was going through.  I got nailed on nearly every flight...

What I'd suggest at this point is hang in there and don't let CH change your plans...  You'll get through this one way or another.  The first thing I'd do is have my blood tested for 25(OH)D levels.  This will let you know where you stand with respect to how much longer it's going to take for the anti-inflammatory regimen's vitamin D3 to achieve a therapeutic level of 25(OH)D.

The second thing I'd do is start on an anti-inflammatory and alkaline forming diet.  The following links will point you in the right directions.

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I'd also avoid food stuffs containing gluten and peanuts until you get your CH totally under control.  While you may not be having a noticeable allergic reaction to these food types with clear or apparent symptoms, it's still possible you're having a reaction and although low, it's high enough to affect the frequency and severity of your CH.

Finally, I've found that ordering oxygen cylinders to have them available at travel destinations is easy and comforting.  Between LifeGas - OxyTravel™ and Apria I've had oxygen cylinders waiting for me at all my travel destinations across Europe, Alaska and here in the lower 48.  The important thing and a MUST... is to have a copy of your Rx for oxygen therapy and that it states it is for your CH, so you can fax or scan to pdf and email to the provider. 

I also ask for the aluminum M60 or aluminum M-size cylinders.  At 23 lbs, the aluminum M60 is light enough to carry from room to room and they hold 1700 liters of oxygen so are good for 8 to 9 aborts. The aluminum M weighs in at 41 lbs so is still luggable, but with a capacity of 3450 liters, it's good for up to 20 aborts...

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Taking my oxygen regulator and mask through TSA security is usually event free.  I tell the TSA attendant at the security check point there's an oxygen regulator in my carry-on bag as I push it towards the the X-Ray machine. They may want to look at it so I keep the regulator and mask in ziploc bags on top if they want to open the carry-on bag.

That leaves the actual flights with the inevitable CH that hit.  Expect them to occur and plan accordingly.  You've got the fast acting oral triptans, I carried a nasal spray applicator for each leg of air travel. I also alerted the flight attendants while boarding that I'm a cluster headache sufferer and will need a couple glasses of ice and an ice bag when one hits.

I've also found that hyperventilating with air at forced vital capacity tidal volumes can help.  It won't stop the CH, but it can help hold the pain in check and keep it from becoming a head-banger.

With luck, your CH will start responding to the anti-inflammatory regimen making most of the actual travel preparations a secondary safety net.

Take care and please keep us posted,

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
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Mike NZ
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Oxygen rocks! D3 too!


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Auckland, New Zealand
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Re: 123 Days PF And I Think I know Why
Reply #298 - Aug 8th, 2011 at 4:15pm
 
I've found flying to be a time when I've never had a CH or even shadows, so it's a time I look forward to. I've done 59 flights so far this year, with this week being only the second one this year I've not flown.

Does this make it count as a preventive for me?
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Guiseppi
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San Diego to Florida 05-16-2011


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Re: 123 Days PF And I Think I know Why
Reply #299 - Aug 8th, 2011 at 4:29pm
 
Mike NZ wrote on Aug 8th, 2011 at 4:15pm:
I've found flying to be a time when I've never had a CH or even shadows, so it's a time I look forward to. I've done 59 flights so far this year, with this week being only the second one this year I've not flown.

Does this make it count as a preventive for me?


Damn....It'd sure make me a frequent flyer! Grin

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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