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123 Days PF And I Think I know Why (Read 445426 times)

Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3706 Bremerton, WA Gender:	Re: 123 Days PF And I Think I know Why Reply #400 - Oct 8^th, 2011 at 3:54pm Hey Todd, Outstanding sitrep... and good on you for scheduling the 25(OH)D test. We need all the data points possible to determine the optimum therapeutic range for CH'ers. I've been PF for a year and 4 days on this regimen. Take care and thanks again for the update. V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #401 - Oct 9^th, 2011 at 3:32am

Hi
The beast returned 10 days ago
3 a night 6 to 7 on the kip scale
Not on meds apart from rizatriptan
Started the omega 3 and multiple vitamins 3 days ago, now got d3, 2200iu, start them today,
Also had a bath in Epsom salts, another post.
Last night, sleep, all night, awoke feeling great.
I hope it continues, thanks for the tip
Tony

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Re: 123 Days PF And I Think I know Why
Reply #402 - Oct 9^th, 2011 at 2:43pm

Congrates on finding a way to destroy the beast. I have tried that method and it kinda helped me for a while. Now I go to a acupuncturist and get 4 shots of 1cc of vitamin E to the nerve bundles above my eye and in my temple and so far no attacks for two years.
It feels great to know that you don't have to experience the pain anymore!!!!

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Re: 123 Days PF And I Think I know Why
Reply #403 - Oct 16^th, 2011 at 4:43pm

I am new here and have a lot more reading to do. I just wanted to give my 2 cents. On Friday of this week, I started taking omega-3 fish oil and vitamin D3 10,000IU. I am also on pridnisone, verapamil, redbull, Bronkaid and exercise. All I know is my KIP has gone way down. I just had my daily afternoon attack. I slamed monster energy drink and took a Bronkaid the minute I felt something weird (a shadow). The pain went to about a 4 and then the DIRTY cluster evaporated. I didn't take a imitrex for the first time.

i want to say something is finally working. Could it be the vitamins already? or is my cycle ending? Only time will tell.

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Re: 123 Days PF And I Think I know Why
Reply #404 - Oct 17^th, 2011 at 10:20pm

Ok, so, at one point this past August, I was taking about 15000 IU of D3. I think it was about a week or two at the most. I went down to 10000 IU though and then eventually down to 5000 (which I am still taking now) simply because I need to save money and ration my vitamins. LOL (I'm a college student. lol) But also, when I was taking the higher doses, I didn't really notice that much of a difference energy-wise. I know Batch, you said your wife is taking 15K and has more energy. I didn't really notice much difference at all. Was I simply not on the higher dose for long enough? Or was it because I hadn't added the Omega3 and the rest to the regimen?

Something I have noticed. (And for those who don't know, I don't use D3 for CH because I don't have CH, but I've heard so many good things about D3.) A lot of colds and bugs have been going around my school this year. At one point I got pretty stuffy and had some sinus pressure, but that's as bad as it got while everyone else was like, out sick. lol So, this stuff really does boost your immune system. That much is for sure. I'm noticing that even with just taking 5000 IU.

Another thing. I've been telling friends and familly about D3 and how they should take it for health benefits. Then I mention the number 10000 IU and they freak out and say that's too much. So, I tell them "No no no, you see, I was on this forum online..." and they're like O_O "A FORUM on the internet??? You NEVER get medical info on an online forum! Only trust professionals!" and they end up listening to their doctors that say 10000 IU is too much. -.- How do I convince people that their doctors are wrong and the internet (in this case) is right? LOL

Also Batch, have I ever told you that your avatar is made of pure epic win? I think I have. But I felt the need to say it again. XD

« Last Edit: Oct 17^th, 2011 at 10:52pm by Jair Crawford »

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Re: 123 Days PF And I Think I know Why
Reply #405 - Oct 17^th, 2011 at 11:00pm

Last Friday night I went to the er with a DIRTY CLUSTER 10 kip. I told them what medication I was on (imitrex 100 mg TAB prescribed on 10/13/2011, prednisone 20 mg Tab prescribed on 10/10/2011 34 total pills starting with 4 a day then slowly dose down? , verapamil tab 120mg prescribed on 10/14/2011) and then they gave me an iv. The cluster went away after 45 minutes and lots of throwing up. I was released from the ER and about 3 to 4 hours later I had another 8 kip DIRTY cluster headache. I did a lot of reading on here that night and Saturday morning I purchased and took the vitamins. I also purchased Bronkaid, and redbulls. Anyway, I have not had a cluster headache. My right eye doesn't feel blury and the right side of my brain feels great. i actually enjoyed life a little today. Also, I had 36 treximet tab pills that I had saved my last cluster attacks 18 months ago. I had them stored in my safe. When those pills ran out about 2 or 3 weeks ago, thats when I went to the comunity health center. So I have been in my cycle for about 5 weeks I guess. I am taking the prednisone and verapamil on top of the vitamins. Also redbulls and a total of 2 bronkaids tablets. I was told my medication was low doses. That is why I am posting. my last cycle 18 months ago lasted a few weeks longer than this cycle at 5 weeks. I honestly feel in my heart and soul the vitamins are the answer. I have oxygen and imitrex on stand by though. I have a doctors appointment tomorrow and I plan on stopping all medication soon. Redbulls, exercise and vitamins are the route i'm going. Any thoughts, explanations, or input would be highly appreciated. thanks in advance. Hopefully no more DIRTY HEADACHES..............

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Jair Crawford CH.com Junior Offline I Love CH.com! Posts: 43 Gender:	Re: 123 Days PF And I Think I know Why Reply #406 - Oct 17^th, 2011 at 11:10pm @ Dirty, have you added the Magnesium and Calcium Citrate to your daily vitamins? Make sure you follow Batch's instructions very clearly with the formula. Very wise, he is.
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Re: 123 Days PF And I Think I know Why
Reply #407 - Oct 18^th, 2011 at 5:54pm

This has not worked for me, in the least? In fact, the CH'S seem to have gotten more severer. 6 weeks now on this regimen. Maybe my blood pressure med and Zoloft, have something to do with it??
I am so happy it's helped some others though and I wish you all the best. I get so anxious just to even sign on here, but I want to contribute in any way that I can, in hopes we will ALL have help in the near future!

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Re: 123 Days PF And I Think I know Why
Reply #408 - Oct 18^th, 2011 at 9:27pm

Welcome to the board Wolfpack, what else do you have to treat your CH? Oxygen? A good prevent med? As with it seems every other CH treatment, we haven't found anything that works for everyone, just the nature of the beast. But there's so much out there to try, would hate to see you miss out on any of the more popular treatments out there.

Joe

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Re: 123 Days PF And I Think I know Why
Reply #409 - Oct 19^th, 2011 at 11:54am

Jair Crawford wrote on Oct 17^th, 2011 at 11:10pm:

@ Dirty, have you added the Magnesium and Calcium Citrate to your daily vitamins? Make sure you follow Batch's instructions very clearly with the formula. Very wise, he is.

Before my cluster cycle even started I felt like chit a couple months ago. Something was wrong with me but I couldn't explain it. Then about 5 weeks ago my cycle started. I started taking vitamins last Saturday morning after being released from the ER. I have been pf since then and never felt better. More energy and a positive outlook on life. I haven't added the Magnesium and Calcium Citrate to my daily dose until today.

My doctor yesterday gave me a script for oxygen and imitrex for the next cycle even though I am pf. I figure I would stock pile up now. At this time, I feel so good I don't need to make an appointment with the neurosurgeon. My cycle is 5-8 weeks with clusters every 18 months for the last 10 years. So in about 18 more months, I will know for sure if the vitamins are the miracle answer for me. Grin

Grin

I will never stop taking the vitamins Cool

Cool

Thanks for your help. I LOVE YOU BATCH. LOl peace Cheesy

Cheesy

« Last Edit: Oct 19^th, 2011 at 11:57am by Dirty »

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #410 - Oct 19^th, 2011 at 3:32pm

Interesting comments… I'll start with the obligatory disclaimer that I'm not a doctor and you should see your PCP or neurologist about this regimen…

Having said that, I did stay at a Holiday Inn a few years ago, and I'm a long time CH'er like many of you with the last six years as a chronic type averaging 3 CH/day over that period… Fortunately, my CH aborted easily and rapidly with oxygen therapy at flow rates that support hyperventilation… I took no other CH meds…

All that ended last October, two days after I started this regimen… I've been PF ever since…

I'll address your comments in order.

Tony, it's been over a week since your last post on this topic… Howzit? If you respond like 78% of the others who reported this regimen effective, you should be in tall cotton about now and free of the beast… Please let us know…

Hey Dirty, I'm delighted at your response to vitamin D3 therapy and thank you for the kind words.
Several of us experienced a favorable response to the anti-inflammatory regimen within 48 hours… Most CH'ers who started this regimen experienced relief near the end of the second week, and a few have taken over a month… As near as we can figure, this is likely due to the initial level of 25-Hydroxyvitamin D, a.k.a. 25(OH)D, the serum level metabolite of vitamin D3.

The normal reference range for 25(OH)D is 100-200 nmol/L (40-80 ng/mL). However, reports from CH'ers who have gone pain free on this regimen and had the 25(OH)D test done at the three month mark were mostly in the 150-225 nmol/L (60-90 ng/mL) range. A few overshot this target range with 25(OH)D levels between 250 - 295 nmol/L with no adverse effects…

There's also sufficient clinical evidence that indicates that it can take up to three months at a therapeutic dose of 10,000 I.U. vitamin D3 to elevate 25(OH)D levels from 50 nmol/L up to 150 nmol/L.

Jair, Good point about taking the calcium and magnesium supplements… Both are important when taking vitamin D3. The vitamin D3 Council suggests a total daily intake of magnesium at 500 to 700 mg. Given magnesium is present in green veggies, a daily supplement of 400 mg. magnesium should be sufficient. They also recommend zinc and vitamin K as the other two cofactors that help the body metabolize vitamin D3 into 25(OH)D and process it effectively.

There's also nothing scary about a vitamin D3 dose of 5,000 to 10,000 I.U./day or 25(OH)D levels in the 150-225 nmol/L range as they're consistent with measurements taken on lifeguards who spend an average of 6 hours in the sun.

25(OH)D levels this high are also well below the toxicity threshold range of 500-750 nmol/L, (200-250 ng/mL). If your 25(OH)D level climbs to the 200-225 nmol/L range, or you've been on this regimen for three months, whichever occurs first, lower the daily dose of vitamin D3 to 5,000 I.U.

A bathing suit clad person's skin can make 5,000 to 10,000 I.U. of vitamin D3 in as little as 30 minutes exposure to the UVB in direct sunlight…. There are studies that prove this as well…

Folks at the Vitamin D Council also have evidence from studies to substantiate the fact that we normally metabolize the equivalent of 3000 to 5000 I.U. vitamin D3 a day… That makes a daily intake of 5,000 I.U. vitamin D3, a maintenance dose.

See the following link for the Vitamin D3 Council page on vitamin D3 intoxication. If you read through all the tabs on this site, you'll be an expert on how to supplement with vitamin D3:

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As far as taking this regimen along with other CH meds goes… There shouldn't be any problems. There are no significant contraindications listed… Prednisone may slow the rate at which vitamin D3 is metabolized into 25(OH)D, but a therapeutic dose of vitamin D3 at 10,000 I.U./day should provide a sufficient margin.

In addition, taking the calcium supplements in this regimen may lessen the therapeutic effect of verapamil. Having said that, the data collected in this area came from a clinical study of heart patients taking verapamil… not CH'ers… Taking the calcium and fast acting verapamil 8 to 10 hours apart should help prevent any significant interference between the two.

Hey Wolfpack, let me echo Joe's Welcome Aboard… and hang in there… A couple of CH'ers were on this regimen for nearly two months before they started having a favorable response… Both were chronic so the cessation of their CH wasn't due to end of cycle.

The best course of action is to see your doctor and have the 25(OH)D lab test done… You may as well ask for a chemistry panel + complete blood count (CBC) at the same time. This will give you and your doctor a good look at your 25(OH)D level as well as electrolytes, calcium and other values to make sure there are no other deficiencies or insufficiencies.

If you haven't had a favorable response by the three-month mark or have been your doctor for the 25(OH)D test, drop the daily vitamin D3 intake to 5,000 I.U.

Also remember, this regimen is not 100% effective for everyone. Like Joe said, "we haven't found anything that works for everyone…" To that I'll add… we're getting close. We have a few CH'ers with 25(OH)D levels above the optimum range of 150-225 nmol/L who have experienced a marked reduction in CH frequency and severity, but still have occasional low level CH.

Why this happens and why some CH'ers do not have a favorable response to this regimen even with 25(OH)D levels in the optimum range is clearly the subject of further research. A low arterial pH from diet or another conditions is a possible reason. Comorbid disorders like thyroid insufficiencies may also play a roll. The sooner we get this regimen into a formal clinical study, the better.

This is still a healthy regimen worth taking even if it doesn't prevent CH. All you need to do is compare its risk-reward ratio with verapamil and some of the other off-label CH preventatives…

Moreover, even though this regimen didn't prevent CH completely for some, they felt it reduced the frequency and severity to a level that gave them back a quality of life they didn't think possible with CH.

They also report other favorable responses to this regimen such as fewer colds, they sleep better, depression is gone, more energy, and an overall sensation of wellness. What's not to like about that?

See your PCP or neurologist for the 25(OH)D lab test then take it from there…

Take care,

V/R, Batch

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

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Jair Crawford

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Re: 123 Days PF And I Think I know Why
Reply #411 - Oct 19^th, 2011 at 7:04pm

Ok so do you think the reason that I wasn't really 'noticing' anything with the higher dose of D3 was because all I was taking was the D3 alone, without the Omega3, Magnesium, and Calcium Citrate?

And thanks for the links! Hopefully that'll convince people that D3 really isn't as easy to OD on as they think. lol

I don't have CH. I don't know anyone in person who has CH. But I want to help. Let me know how I can spread awareness.

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Re: 123 Days PF And I Think I know Why
Reply #412 - Oct 19^th, 2011 at 7:29pm

Thanks for the words of encouragement! I REALLY appreciate it! Called the doc for another round of Prednisone today and will start Depakote (haven't been on this for 2 years) once I am finished with the Predisnone.

I will continue with the regimen. Maybe I am a "slow" taker! Today, I skipped everything. Used my Zomig nasal spray about 3:00. These have been the difference from going insane or leading a "so called" normal life.

What I don't get is this? What are the ingredients of Predisone that makes "the Beast" disappear? And, the RedBulls? There seems to be this nerve that is ending up somewhere that it shouldn't be on the right side of my eye. It's been 8 years now and I feel like I have tried everything!!

Yes, got my physical last year and vitamin d was very low. So, started getting that corrected. Saw another study about testosterone. Mine was extremely low (I am 45) . Started that regimen and the "beast" was gone for almost a year, so I thought that was the answer, but then it returned. Testy levels are norm now, but the CH's are still around.

There has got to be something with the ingredients that help us: Testy Med's, RedBull, Prednisone, Vitamin D3, Calcium?? What is the combo between these things??

Will report back. And again, I am so thankful to all of you that are giving suggestions/ideas to help us ALL!

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Re: 123 Days PF And I Think I know Why
Reply #413 - Oct 19^th, 2011 at 11:04pm

wolfpack wrote on Oct 19^th, 2011 at 7:29pm:

Called the doc for another round of Prednisone today and will start Depakote (haven't been on this for 2 years) once I am finished with the Predisnone.

You normally start the two preventives at once, with the prednisione being effective until the other has chance to build up. Check with your doctor about what you should be taking and when.

wolfpack wrote on Oct 19^th, 2011 at 7:29pm:

What are the ingredients of Predisone that makes "the Beast" disappear? And, the RedBulls?

For Red Bull it's the caffeine and taurine that do the "magic". I'm sure that the carbonation helps increate teh rate at which they are absorbed, making them effective quicker.

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Re: 123 Days PF And I Think I know Why
Reply #414 - Oct 19^th, 2011 at 11:38pm

Quote:

Prednisone is a synthetic corticosteroid drug that is particularly effective as an immunosuppressant drug. It is used to treat certain inflammatory diseases and (at higher doses) some types of cancer, but has significant adverse effects. Because it suppresses the immune system, it leaves patients more susceptible to infections.

It is usually taken orally but can be delivered by intramuscular injection or intravenous injection. It has a mainly glucocorticoid effect. Prednisone is a prodrug that is converted by the liver into prednisolone, which is the active drug and also a steroid.

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Re: 123 Days PF And I Think I know Why
Reply #415 - Oct 25^th, 2011 at 7:37am

Start my husband on this on Saturday. Didn't add the calcium citrate until yesterday as I had a brain fart and missed it. Since then he as slept through the night every night. Has had some other hits though. This cycle was acting strange to start with. He is about 1.5 weeks into a usual 5-6 week cycle. Obviously hoping that adding the missing factor will make things even better. When I say this cycle was acting strange, I mean he was getting hits but they were lower level on the kip scale. They didn't ramp up like they usually do. The night before he started Batch's program, he was up every 2 hours getting hits all night long though which was the worst it had gotten thus far in this cycle. Since then, he has only gotten 1 hit per day, last night was a bad one though. My fingers and toes are crossed that this will work for him....Will update more when a little further into this cycle.

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Re: 123 Days PF And I Think I know Why
Reply #416 - Oct 25^th, 2011 at 1:34pm

Started on Pets’s regime….. not voluntarily….. it was rather a complot between my wife (Marta) and Pete…

the disadvantages of the fast communication (e-mail / Skype etc.)

Marta had all the remedies shipped Fed Ex or DHL (don’t know) from the USA to Switzerland…..

now I am on a strict regime – and under tight control…..

Pete, wonder if I will see a “wonder”….. or even just a small improvement….. it will be very welcome.

Michael

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« Last Edit: Oct 25^th, 2011 at 1:36pm by wildhaus »

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Jimi CH.com Moderator CH.com Alumnus Offline Don't feed the moderators Posts: 4925 Madisonville, KY Gender:	Re: 123 Days PF And I Think I know Why Reply #417 - Oct 25^th, 2011 at 3:29pm I hear a voice crying out from the wilderness. Hello Michael.
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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3706 Bremerton, WA Gender:	Re: 123 Days PF And I Think I know Why Reply #418 - Oct 25^th, 2011 at 10:58pm Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Ya gotta love a smart wife...
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Re: 123 Days PF And I Think I know Why
Reply #419 - Oct 27^th, 2011 at 11:04am

Hi Batch, and gang.

Batch, it is amazing and wonderful to hear you have been PF for a year!!

I tried this regimen several months ago, but the Vitamin D3 clashed with my high dose of Topiramate, and the result was it turned my urine on fire. During the time I was able to take it, it did seem to take affect within 2-3 days, and did seem to flat-line the demon.

But, here I am, several months on and have increased my Topiramate to 400mg a day, and I'm still getting attacks, well, I wish I could say I were still getting them at my normal rate of every 3 days. But they are really more often than that.

So, I'm going to wean myself off Topiramate and give this this regimen a try. And you know, I actually have more faith in this than anything else at the moment.

xx Renée

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Re: 123 Days PF And I Think I know Why
Reply #420 - Oct 28^th, 2011 at 10:02pm

Over 1 month ago started this regimen with 15K IU D3, Magnesium Citrate 500MG, Omega3 3600MG, Calcium Citrate 500MG, all washed down w/ a tall glass of lemonade containing 12% juice with dinner.

Still no relief and am in very high cycle.

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and ordered the 25(OH) D test for this Monday. Cost $59 bucks and should post findings on this thread no later than Wednesday.

Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019

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Re: 123 Days PF And I Think I know Why
Reply #421 - Oct 29^th, 2011 at 9:25pm

Been suffering with CH for years now. Realized this past week that the headaches I was getting in the Navy after swimming were minor CH. I've been on Verapamil and Imitrex for three years now. Last week it's as if I hadn't been taking anything. A 9-10 hit. It was about 6pm and my wife was up and got to experience the whole begging for mercy. Decided to come back here and see if there was any other meds and found this thread. Started the regimen immediately but without the Calcium. I assumed one of my joint pills was calcium. I suffered a 5 at 6am on Thursday. That night my wife and I bought exactly what we needed and I started the official regimen Thursday night. Cycle should be in full effect but seems to have just stopped. By this point I should have had a CH Thu, Fri, and today but so far so good.

Thanks so much, so far for the work on this. I have not been able to carry any significant amount of sick or annual leave because of CH. Even cost me a job almost 10 years ago. I was very nervous because I just started a new job and the dragon awoke with a vengeance. Who knew the dragon just needed to be fed some vitamins/minerals?

Anyhow, I will keep taking this because I prefer this regimen than the Verapamil/Imitrex + whatever else they decide to give me. My neurologist is good and open to new ideas so I will share with her on Tuesday. Not enough time to prove much of anything but as long as I'm pain free, I'm happy...so is my wife.

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tgdurst CH.com Junior Offline I Love CH.com! Posts: 38	Re: 123 Days PF And I Think I know Why Reply #422 - Oct 30^th, 2011 at 12:32pm Batch just checking in. I am STILL pain free THANK GOD (and Batch) and I got my blood test about 2 weeks ago and have yet to get it from my Dr. after 3 phone calls and 3 emails etc. I WILL get them this week and post the D3 results here.
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tgdurst CH.com Junior Offline I Love CH.com! Posts: 38	Re: 123 Days PF And I Think I know Why Reply #423 - Oct 31^st, 2011 at 5:54am Name Value Reference Range Vitamin D, 25-Hydroxy 63.0 32.0-100.0 ng/mL and as if by magic it comes this AM. It looks good now.. I have/had no frame of reference to start from though but I am sure it was not within range.
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Re: 123 Days PF And I Think I know Why
Reply #424 - Oct 31^st, 2011 at 10:00pm

Hey all, I've taken the time to read this whole thread. It seems your definitely on to something here. I to have started the regimen 2 days ago. However my cycle appears to be winding down as the daily attacks had stopped and was enjoying PFDAN here and there for a couple of days at a time. I was attacked the first night but last night was PF.
I'm a big guy 6'2" over 250# So I went with 20000 IU D3, 4800mg Omega 3, Magnesium Citrate 400mg in pill form in the morning and 375mg at nite in the form of a powder drink mix at night, Calcium Citrate formulated with Mag, zinc, and D3 500mg. Everything seems to be going better. Last night I slept like a baby. During my cycles I don't ever sleep well even on PF nights. Its like I wake myself up just to make sure I'm not in pain. I do this every 90 mins-2 hrs. And as we all know how much of a toll that puts on you after awhile.

Thank you to everyone who has made this site possible. Before I found it I was a wits end. I was really close to being another statistic to the nickname of these damn headaches. This site and the people involved with it have given me hope and that really means alot when you become that desperate. Thank you all.

Wishing all PFDAN
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