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D3 Optimism (Read 738 times)
Ellick
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D3 Optimism
May 20th, 2014 at 5:33am
 
Hi Everyone,

This post is intended for Batch's thread on D3 but the software would not respond to my putting a reply on it.

I am reporting back on my results from using the D3 regimen.

Just under 2 weeks ago (I was about a week into my cycle, although the build up had been about 10 days prior) I began with 20,000iu D3 daily, Calcium citrate 1,200 mg daily, magnesium 600mg daily and 3,000mg Omega 3,6,9 (flaxseed oil).

This did not work for me. I was having up to 8 hits a day mostly at night, every 45 minutes until around and 4am when I slept for about 2 hours waking due to another hit. Each hit took 30 minutes of O2 to abort. Hits in the day were less fequent but they were powerful and 10s.

Batch gave me advice and I up'd my D3 to 50,000 iu daily and added 100mcg K2, B.50 complex (made my urine a rich orange colour) and 3mg of Boron (I bought Triple Boron). I am looking for vitamin A as a further advised addition; haven't found any yet.

Three days after starting the 50,000iu and additional vitamins I have had no day time hits and in the same timescale my night time hits reduced to 3 and aborted quickly. Once or twice, I did not need to use O2.

I take all the vitamins in the mornings with a big bowl of porridge and honey.

Now, I am more or less pain free. I have low level shadows which I either live with the tension of it racking up into a full hit or I abort it with 4 or 5 minutes of O2. I have a significant headache when I wake up which has stays either the whole day or is gone within a couple of hours. Note, I am saying headache, not hit.

My energy levels feel better but I can only do about half my usual work load before I feel tired and don't want to push myself.

I have discussed the regimen with my GP(Dr). He knows a lot about clusters and D3. He set up my blood test at the surgery for whenever I want to arrange it. He is encouraging about using D3.

During this cycle, I have used sumatriptan twice, one did not work (bad hit I won't forget), I have not used prednisolone or verapamil at all.

I often have one sided rhinitis prior to and during a cycle and I am reluctant to use a topical steroid spray, because it seems that might be one of my triggers, although it is not an instant trigger. The rhinitis has not ameliorated as yet.

The one thing I have learned, is not to expect a quick fix from D3. It has not taken a lot of time, but keeping focus is at least for me integral to the success. During cycles, my perception of time is that it is considerably slower. This is psychological and I think common to most discomfort and pain.
I am optimistic that I am on the road to PF normality and I am looking forward to having a beer with friends in a week or so.

I am due to reduce my D3 intake to 25,000 on Thursday for a week, then 15,000iu for two weeks, then a blood test.

Batch. Thankyou.
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Guiseppi
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Re: D3 Optimism
Reply #1 - May 20th, 2014 at 9:10am
 
That's fantastic news! My only advice is to consider staying on a maintenance dose once your cycle ends. I'm 4 years pain free now, I stay on a permanent daily dose of 5,000, just had my physical and my level was at 86. Seems to be the "magic" point for me. After over 30 years with beasty, I've enjoyed the hell out of these last 4 years! Crossing my fingers that it continues to work for you. That Batch is an okay guy aint he? Wink

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Ellick
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Re: D3 Optimism
Reply #2 - May 20th, 2014 at 2:59pm
 
Thanks Guiseppi.

I have been thinking about maintenance. I wondered if when I had signs of Ch I would start the high dose D3 again or as you do take it low level continuously by keeping the blood tests up and getting the level right.
On balance, continuous sounds best.
Batch is more than an ok guy.
Helping so many people who endure CH is both a great weight and a great pleasure.
Stay well.

Ellick
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Ellick
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Re: D3 Optimism
Reply #3 - May 26th, 2014 at 7:33am
 
Hi everyone,

Another update.

I have been on 25,000 IU D3 for the last 5 days and in my 3rd week of the regimen.
I have no hits at all now and last Monday we celebrated a big successful financial deal (to us) which will change our lives and I had two small glasses of champagne (in a what the hell moment). No hit.
I've had a couple of small beers over the last few days. No hit.
I can work a full day now, although when I travel I take some precautionary sumatriptan.
I have daily shadows but these are what I have been used to over most of my life and they are easy to handle and forget. If I use 02 it is for less than 5 minutes.
I have had some unusal transitory pains in my muscles; arms, legs, back and chest which are not significant with the exception they are in places I wouldn't expect, i.e. top central chest, upper leg pain, rear upper arm and right upper back. They happened over 3 or four days about 3 or 4 days ago and have not returned.
I had floaters in my right eye. They have gone.
My shadows have changed side to left , central and back to right again. I have had right sided hits/episodes for 20 years and before that I was always left sided.
I have tried to stick to the regimen as close to the doses recommended by Batch, and I take it all in one go at breakfast. (I like big breakfasts).
Last night was my first full uninterupted 8 hour sleep.
I know my cycle has not finished (I am 3 weeks in to what is normally an 8 to 10 cycle peaking at 3 to 4 weeks) and should be in peak now.
The feeling I have is that my body is picking up the vitamin input and changes are taking place which to all intents and purposes is regulated balancing.
It feels good.
I still have my daily headache but it is welcome because as you all know a headache is manageable and you haven't got a fight on your hands.
For all of you who have not tried this, go for it, you have nothing to lose and a lot to gain.  Smiley
Ellick Smiley
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Guiseppi
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Re: D3 Optimism
Reply #4 - May 26th, 2014 at 8:45am
 
That's fantastic news, as I mentioned before, 4 years pain free on the D-3! Hoping you match then beat my streak. Smiley

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