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123 Days PF And I Think I know Why (Read 441330 times)
Mike NZ
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Re: 123 Days PF And I Think I know Why
Reply #1125 - Dec 30th, 2012 at 3:35pm
 
Guiseppi wrote on Dec 30th, 2012 at 9:00am:
I have no intention of going off of it, ever!


Same with me and it's not just been good for CHs, I've not had a single cold or other infection for about two years or so either.
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birdman
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Re: 123 Days PF And I Think I know Why
Reply #1126 - Jan 2nd, 2013 at 1:10pm
 
I am still pain free after D3 as well as busting.  This cycle only lasted three weeks and I have never had a cycle shorter than two months in the 26 years I have been fighting.  Happy New Year!!!
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1127 - Jan 2nd, 2013 at 2:53pm
 
Hey Birdman,

That's great news and a wonderful way to start the new year...  Good on you!

If you stay on the anti-inflammatory regimen to keep you 25(OH)D serum concentration up in the green zone...  your next episodic cycle will most likely be a non-event...  and you won't need to wait for it to rise if you do stop taking it...

Give yourself another week... and if you've the time, please take the Anti-Inflammatory Survey.

Take care,

V/R, Batch
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« Last Edit: Jan 2nd, 2013 at 2:57pm by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #1128 - Jan 2nd, 2013 at 8:31pm
 
Happy new year to all!  My husband has CH and I have been reading your posts about the regimen. There are so many stories of success its amazing.  Could you please describe the regimen again?  I got the D3 and fish oil for him yesterday but now I am reading about other things he should be taking.  Also, is there such a thing as too much vit d3?
Thanks so much for your help Batch. God bless u
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Re: 123 Days PF And I Think I know Why
Reply #1129 - Jan 2nd, 2013 at 8:53pm
 
It's a somewhat flexible regimen - and should be based on one's 25(OH)D serum test results. Here's what I'm currently taking each day:

  • 10,000 iu vitamin D3
  • 600mg calcium citrate (generic Citrical)
  • 50mg zinc
  • 240mg magnesium
  • 2 big-a$$ed fish oil soft-gels
  • 1 multi-vitamin for men over 50 (generic Centrum Silver) – contains the other trace vitamins you need for good vitamin D absorption (like vitamins A & K2 and Boron)

Edited to add: My target serum level for vitamin D - the 25(OH)D test – was between 60-110 ng/dl. When I started I was at 22. So I upped my routine to 20,000 iu/day with a loading dose of 50,000 iu once a week. After 2 months of that, my serum level came back at 72 ng/dl. And it was about 2 weeks before that that I went completely and utterly pain-free in the head.
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« Last Edit: Jan 2nd, 2013 at 8:55pm by Brew »  

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Re: 123 Days PF And I Think I know Why
Reply #1130 - Jan 3rd, 2013 at 8:00am
 
Hello

This is my first post here so I thought I'd introduce myself.

I was diagnosed with episodic CH 12 years ago. I'm male, aged 55 and live in Oxford, UK.

My cluster episodes have been very regular, every 2 years and always late December. I was due to have an episode in December 2010 but it didn't happen. I thought that perhaps I'd outgrown them but yes, you've guessed, it came back in December 2012.

I usually get a few days warning before an episode, with increasing 'normal' headaches then light shadows starting. When this started to happen around Christmas, I checked out this site to see what, if anything, was new and found the D3 regime.

I started taking 30,000 IU of D3 a day, with 3600mg high EPA/DHA fish oil, plus cal/mag citrate and vit A and K, plus zinc. I have done this religiously for the last 8 days, spread across 3 doses.

In the past, my clusters were ultra regular. I would get 2 hits a day, one early evening around 6pm, the other at 2am, both usually around k 8-9 in intensity. I would take Cafergot suppositories to abort and this would work in most cases in around 20 minutes. I would also take half a cafergot tablet before bed as a preventative and this worked in most cases.

This cycle however is very different.

The hits started the day after Christmas but were around k 5-6 and of short intensity. They also happened at completely random times and would often occur around 2 hours apart. I have been able to abort them with ice packs to my neck and head. In the last 2 days, they have become more intense, growing steadily and reaching a k8 this morning which reduced with ice but stayed around as a k4-5 for almost 3 hours.

I have not taken any medicines apart from the D3 regimen and high caffeine drinks such as Red Bull.

I have a doctor's appointment today to get some ergotamine (probably Migril, as Cafergot is now no longer available in the UK). The triptans don't seem to work that well for me.

My Question: Is the completely random pattern of hits due to the D3 and how long might it take for this to start to have a significant effect? It's difficult to 'plan' for the attacks when they are completely random as they are now.

I realise that I'm very lucky compared to some of you here, in that my episodes are spread far apart.

Wishing all of you freedom from pain...

Regards
Ernst
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birdman
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Re: 123 Days PF And I Think I know Why
Reply #1131 - Jan 3rd, 2013 at 1:16pm
 
Ernst, I know everyone reacts differently and I am sure someone like Batch will be along soon with a much better explanation than me.  I would think any change in the hits is a sign that something is going on.  Some folks report pain free results, others, lower intensity and less frequent.  Hopefully, when you continue taking the regiment things will improve.  Best wishes!!
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Re: 123 Days PF And I Think I know Why
Reply #1132 - Jan 3rd, 2013 at 1:49pm
 
Hey Ernst,

Welcome aboard CH.com and welcome to the anti-inflammatory regimen.  I'm sorry I didn't see your post earlier as I would have suggested you ask your PCP/neurologist for the lab test for 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure its status.

Not knowing your serum concentration of 25(OH)D makes it difficult to predict how long it will take for you to experience a favorable response with a cessation of your cluster headaches...  or at least a significant (~80%) decrease in the frequency, severity and duration of your CH.

If you didn't get this lab test today, be sure to call your PCP/neurologist and ask him or her to call in a script to the nearest diagnostic lab.  There are several located throughout the UK

The erratic nature of you CH symptoms is not uncommon...  Several CH'ers have reported similar patterns after starting this regimen.  Nearly all of them stuck with the regimen and experienced a favorable response when their 25(OH)D serum concentrations climbed into the "Green Zone" 60 to 110 ng/mL, (150 to 275 nmol/L for you in the UK).

At 30,000 IU/day vitamin D3 and assuming your 25(OH)D serum concentration was a little less than 75 nmol/L at start of this therapy, it should take a week to 10 days for a more favorable response to this regimen.

As long as you're otherwise healthy with no other comorbid medical conditions involving your liver, kidneys, thyroid, parathyroids, or pancreas... part of the erratic nature of your CH symptoms may be due to a low arterial/systemic pH...  Too much acid.

It doesn't take too much of a downward shift in pH to the lower end of the normal reference range of 7.35 to 7.46 to trigger vasodilation...  The lower the pH, the greater the vasodilation and that makes just about any cluster headache treatment less effective.

If you're getting hit while sleeping... the odds are high this is due to a low arterial pH.  This is due to the low respiration rate while sleeping where your arterial oxygen partial pressure is lowest and your CO2 partial pressure is highest.  In short, a prefect storm with a high probability to trigger a cluster headache.

Under these conditions, the body's homeostatic processes that control arterial pH kick in and they signal your arterioles and capillaries to dilate, your heart to beat faster and your lungs to increase the respiration rate.  You body does this to increase the flow of CO2 to the lungs where it's exhaled.

The easy way to test for a low arterial/systemic pH is by taking Alka-Seltzer tablets in water a couple times a day or a sodium bicarbonate tonic... i.e. a half teaspoon of baking soda in 4 ounces of water four times a day (two hours after eating and right before going to bed).

If either of these two methods result in a drop in the frequency, severity and duration of your CH... you'll need a longer term solution by eating an alkalizing/GOMBS diet.

GOMBS = Greens, Onions, Mushrooms, Beans/Berries and Seeds...  a handful of each a day will do.  You can find info on a GOMBS diet at the following link:

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I didn't see any mention of oxygen therapy...  Even the 15 liters/minute prescribed there in the UK can make a significant difference in the duration of your cluster headaches.

I've attached the HOOF form used there in the UK.  Fill it out and take to your PCP/Neurologist to speed up the process of obtaining home oxygen therapy for your CH.

Take care, thanks again for the post, and please keep us posted on your progress with this regimen.

V/R, Batch

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birdman
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Re: 123 Days PF And I Think I know Why
Reply #1133 - Jan 3rd, 2013 at 4:25pm
 
Told ya!!  Batch rules.
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Re: 123 Days PF And I Think I know Why
Reply #1134 - Jan 5th, 2013 at 7:24am
 
Batch, birdman,

Thanks for your replies.

Batch, thanks for the HOOF form. I'm away from home at the moment but when I return, I'll organise this.

I have been taking the bicarb drinks as suggested and will continue with this.

I had some Migril (Ergotamine tartrate, Caffeine and Cyclizine) prescribed by my doctor and this has made a huge difference to me. I've been completely pain free now for almost 48 hours. I have been taking the lowest dose possible to keep the pain away, as long term use isn't recommended.

I've noticed that on here, very few people seem to use it, yet for me, it's the most effective preventative/abortive by far.

Does anyone else have experience of it?

One other thing that I wanted to mention. As part of my ongoing health supplements, I take Boswellia Serrata (Frankincense) as an anti inflammatory for joint pain. This is reported to have even greater effect than fish oil, although I take both together.
If you google 'boswellia serrata cluster headaches' there are some interesting reports that suggest that it's been helpful in clusters, 'tho it has only been reported on in a small number of tests. Might be worth exploring further?

I will continue with the D3 and supplements and will also reduce the Migril dose to see what the net effect is.

I'll keep you updated and thanks again for the support.

Regards
Ernst
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Re: 123 Days PF And I Think I know Why
Reply #1135 - Jan 5th, 2013 at 9:33am
 
I took Cafergot in the early 80's, a combination of ergotamine and caffiene. It definitely helped, but being an oral med it took too long to kick in. Back then i never tried it as a prevent. As recently as 5 years ago, I was using it in combination with my oxygen. The oxygen would kill the attack in 6-8 minutes, the cafergot would push any return attack back by as much as 12 hours.

I found that energy drinks combined with oxygen worked just as well as the cafertgot so I finally dumped it completely.

I've been on the "Batch Regimen" for almnost 3 years and haven't had a cycle. Crossing my fingers and my toes.

Joe
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Re: 123 Days PF And I Think I know Why
Reply #1136 - Jan 6th, 2013 at 11:48am
 
Hi all. I am the wife of a ch sufferer who is writing up an intro post right now.  He is about 5 weeks into a cycle that is progressively getting worse.  He uses o2 to abort which often helps but has had a couple kip 8s that were relentless untill he used sumaptriptan.  I had him pop about 8000iu d3 last night, he takes omega 3 fish oil and coq10 every day as well.
I have read a lot of this strand but 46 pages is a bit overwhelming.  What should he do at this point go start the regimen?  He is going to ask his dr for testing on vit d levels but I don't want to wait to start.
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Re: 123 Days PF And I Think I know Why
Reply #1137 - Jan 6th, 2013 at 11:56am
 
heliftsmeup wrote on Jan 6th, 2013 at 11:48am:
I have read a lot of this strand but 46 pages is a bit overwhelming.  What should he do at this point go start the regimen?  He is going to ask his dr for testing on vit d levels but I don't want to wait to start.

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Batch
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Re: 123 Days PF And I Think I know Why
Reply #1138 - Jan 6th, 2013 at 12:17pm
 
Brew gave you a good link...

Don't wait.  Have your husband start the regimen now.  Just make sure he sees his PCP to get the lab test as soon as possible.  Knowing the serum concentration of 25(OH)D will take some of the guessing out of his response time.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1139 - Jan 6th, 2013 at 1:56pm
 
Thanks Brew and Batch (sounds like a cooking duo).  One other point... hubby and I have been low carbing for over a year now which is low inflamation diet already.  Don't know if that changes anything. 
Peace
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Re: 123 Days PF And I Think I know Why
Reply #1140 - Jan 6th, 2013 at 3:35pm
 
A low carbohydrate diet should help...  Once you get your husband started on this regimen...  join him.

My wife has been on this regimen taking 15,000 IU/day vitamin D3 for two years and loves it...  She was a chronic migraineur for over 20 years...  hasn't had one since starting this regimen...  On top of that, neither of us has had a cold or the flu while on this regimen.

She feels great, looks great and has more energy than I've seen in years.  She also kicked the heck out of 75 last month...  Go figure.

Take care,

V/R, Batch
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« Last Edit: Jan 6th, 2013 at 3:36pm by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #1141 - Jan 7th, 2013 at 10:22am
 
Hi guys, I'm back after a two-year remission and am just reading this topic for the first time.    I just started this regimen and have great hope after reading the many success stories.     I will revisit this thread periodically to report on my success or lack thereof.   Thanks to Batch and the many others who have spent so much time to share their insight and experiences.

Joe
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Re: 123 Days PF And I Think I know Why
Reply #1142 - Jan 7th, 2013 at 4:06pm
 
Hi Guys and Batch
Dropping in, coming up to my time of year, have been on the maintenance level of the dose since the last episode.  Have just got my pre indicator of a batch coming, a lower left mouth ulcer, so am going to load 50K tomorrow morning and up the dose to 20K daily with extra cofactors. Am hoping the batch holds off until after my 50th in Feb, really want to be able to celebrate properly!
Pain free days and nights to you all, listen to Batch he is an absolute mine of useful info on our condition.
Ian
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Re: 123 Days PF And I Think I know Why
Reply #1143 - Jan 7th, 2013 at 4:11pm
 
Okay, we are trying to balance things out to eliminate the sumatriptan. But the last two days have been awful.  More frequent hits since upping the d3.   just went to the pharmacy and got the other vitamins in the regimen and will start that today.  Any other thoughts would be helpful.
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Re: 123 Days PF And I Think I know Why
Reply #1144 - Jan 7th, 2013 at 4:34pm
 
heliftsmeup wrote on Jan 7th, 2013 at 4:11pm:
Any other thoughts would be helpful.

Make sure you are attempting to abort with oxygen the proper way:

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When done right, most CH attacks can be aborted in 4-6 minutes.
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Re: 123 Days PF And I Think I know Why
Reply #1145 - Jan 7th, 2013 at 6:49pm
 
HLMU,

Brew is spot on...  Oxygen therapy if used properly and early can be a Godsend...

Don't forget to try the Arm & Hammer baking soda tonic four times a day (2 hours after eating and right before bed...  A half teaspoon of baking soda in 4 ounces of water should do the trick...  The directions are on the box... 

If you don't have any baking soda handy try a couple Alka-Seltzers twice a day...

Either method should elevate any low arterial/systemic pH and that should lessen possible vasodilation that makes cluster headaches much worse and more frequent.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Jan 7th, 2013 at 6:52pm by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #1146 - Jan 8th, 2013 at 8:41pm
 
Thanks for all your wisdom.  Yesterday was another bad day, but today has been much better!  Tim is working midnight shifts this week, which really scared him.  He was good through the night but woke every 45 minutes to an hour with kip 4 or 5 once he got home with a kip 7 or 8 to start and another 8 or upon waking. 
He started full d3 vit regimine yesterday with calcium citrate, magnesium, fish oil, and a multivit with zinc and vit k as suggested.  And today he has only had one 5 in mid sleep!  Praying for another good day tomorrow!
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Re: 123 Days PF And I Think I know Why
Reply #1147 - Jan 8th, 2013 at 10:29pm
 
HLMU,

Your husband is working in the right direction... Tell him to have a little faith and hang on...  Odds are in his favor it's going to be worth the wait.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Jan 9th, 2013 at 6:53am by 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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Re: 123 Days PF And I Think I know Why
Reply #1148 - Jan 9th, 2013 at 2:55pm
 
Just a quick update from me:  after 5 days of Vit. D3 + cofactors, the jury's still out on if it is helping my head.   I am completely PF during the day but still getting hit at night.    I'm not sure if the D3 is causing the  pain-free days, because my cycles usually start slowly and later ramp up to hits during all hours.

On a (very) positive note, this anti-inflammatory regimen has all but eliminated my lower back pain, so even if the effect on my clusters turns out to be minimal, I owe a great deal of thanks to this thread.   

--Joe
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Re: 123 Days PF And I Think I know Why
Reply #1149 - Jan 9th, 2013 at 3:17pm
 
5 days could mean you're just getting started. It took some of us two months. Hang in there and KEEP IT UP!
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