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123 Days PF And I Think I know Why (Read 466133 times)
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Re: 123 Days PF And I Think I know Why
Reply #150 - Apr 8th, 2011 at 1:48pm
 
Ok, I've been taking 10,000 IU of D3 daily for over a month now.  I built up the courage over spring break to stop taking it twice, for two days each time to find out what would happen.  Both times that I stopped taking it, I started shadowing more heavily by evening of the first day, and I took a full attack at night on the second day the second time I stopped taking the D3.  Both times the pain went away the day after when I resumed taking the D3.

Seems to me that in my case - D3 definitely is working.

Has anyone had NO success so far with it?  I think it would be interesting to hear about the cases that do not, since this seems to be working for so many people in this thread.

A comparison of medications, symptoms, etc taken by those that it does work for, and those that it does not work for could be useful for determining if there may be similarities between those that D3 helps and those that it does not.
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Re: 123 Days PF And I Think I know Why
Reply #151 - Apr 8th, 2011 at 2:03pm
 
The jury is still out for me but I have only been taking the D3 for about 5 days now.  The 3rd day there seemed to be improvement, but yesterday was horrible back to HA during day every 3 hrs and then last night every 2 hours.  One thing of note however, is once in cycle the changes in barometric pressure, high humidity definitely cause me to have more hits and presently our weather is crazy with changes so this could be reason for not having the same positive affects on me as for many, because the 3rd day I thought it was really working (and it may be) because I went 7 hrs with not a hit.  Also of note, except for today, when hit I have been able to abort with O2 in a much shorter period of time.  Unfortunately today am in a big shadow period.

Wishbone
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Re: 123 Days PF And I Think I know Why
Reply #152 - Apr 8th, 2011 at 4:06pm
 
Wishbone,

You're not alone.  I have at least one other heavy hitter having a similar response to this regimen.

Try shooting the shadows with oxygen therapy using the modified forced vital capacity tidal volume breathing technique we discussed in the call.  If you're able to blow away your shadows with this technique it may mean your arterial pH levels are too low.

Have you started drinking an 8 oz glass of lemonade with lunch and dinner as we discussed in the call?  This can help as there are two parts to the complete regimen.  The Omega 3 Fish Oil and vitamin D3 act as an anti-inflammatory to combat possible neurogenic inflammation in and around the trigeminal nerve.  The calcium citrate tablets containing magnesium and zinc act as co-factors to improve the effectiveness of the vitamin D3 and when taken with fruit juices high in citric acid act as a stomach acid buffer so should help elevate a low arterial pH. 

If the arterial pH is too low it tends to stimulate vasodilation and that can lead to an increase in the frequency and severity of your CH.  Elevating the arterial pH to the upper end of the normal range should act as a vasoconstrictor so would lower the frequency and intensity of your CH.

I've sent you a pH data collection spreadsheet so you can start tracking your saliva pH as an analog to arterial pH.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Apr 8th, 2011 at 4:06pm by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #153 - Apr 8th, 2011 at 4:15pm
 
Batch the O2 does not knock out the shadows, maybe temper them some, but still there. I have not today had the lemonade (ran out) but before all this week have been drinking about a quart a day.  One note however, I did not drink with meals just drank it during the day.

At this point I really do think my ph probably low but I also think the crazy weather has the demon happy.  Up until today I was getting better. Weather is suppose to break today so with more lemonade maybe the demon will rest a bit.
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Re: 123 Days PF And I Think I know Why
Reply #154 - Apr 8th, 2011 at 10:58pm
 
Wishbone,

Copy all...  and sounds like a plan (SLAP) with the lemonade.  I had the best response drinking it with lunch and dinner...  You might try taking the calcium citrate tablets right before lunch along with a glass of lemonade.  That will ensure a good buffering action.

You also may have better luck shooting shadows when the new InGage™ regulator comes in...

We'll figure out one way or another what's preventing this regimen from working properly for you.

Take care and hang in there. 

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #155 - Apr 9th, 2011 at 9:10am
 
I just read through the whole thread. Very interesting read! Thanks for starting this, Batch. Smiley

Now, I've been planning to get Omega3 for me for a while. This gives me one excellent reason to do some more research on the brands available in here. I do take lots of vitamins already, some of them contain vitamin D. I need to look that up as well.

I suspect that I will find different doses in here. Usually our doses are much, much smaller, but let's see about that.

PF days to all,
Sanna
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Re: 123 Days PF And I Think I know Why
Reply #156 - Apr 10th, 2011 at 4:37pm
 
I know I am still mid cycle because I have a very dodgey left eye and eyebrow every morning when I wake up!! Whether out of stupidity or curiosity I wanted to see what would happen if I stopped taking the D3 regime - I only missed the supplements for 1 day and sure enough the shadows started up again!! Straight back on the regime ( dont need a full blown CH to prove a point )  24 hrs later no more shadows.
Oh yes ~ I also passed the beer test Cheesy, gonna try the vodka test next  Grin Grin
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Re: 123 Days PF And I Think I know Why
Reply #157 - Apr 10th, 2011 at 8:25pm
 
OK so I'm almost too scared to say anything in case it hears me...

BUT...

I'm up to day 3 PF so far! 3000mg of Omega 3 and only 1000 IU of D3 a day and my shadows have virtually disappeared. The only thing I have noticed is that if I stay up too late at night, outside of my regular routine (which I have done a few nights this weekend), I get a niggle of pain from shadows...but I'm hoping that as it builds up in my system that might stop being a problem.

But OMG I feel a million times better and like this NATURAL path a LOT better then the anti depressants my neuro wanted to try me on next...

My question is for those on verapamil as well as this system - have you stopped your verapamil? I'm wondering when I should taper mine down and see what happens...
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Re: 123 Days PF And I Think I know Why
Reply #158 - Apr 11th, 2011 at 10:10am
 
I don't even know what to say but suppose I should say something, I started the D3 10K and 3600mg Fish oil  also talking 480mg verap and all was well for awhile (just starting my cycle) then I tapered off the verap and got slammed again so I started the verap again still not getting better, I upped my dose to 960mg verap and maybe just a little better but still getting hit hard, I then added the Calcium Citrate and they got worse I stayed on this cocktail for a few days but I swear the calcium made it worse for me so I stopped taking the calcium and just stayed with the 10K the 3600mg and the 960 verap it doesn't seem to be helping me anymore (maybe mid cycle), so 2 days ago I just stopped taking the verap because I didn't feel like it was helping me anyway, had a pretty rough night last night, hell I don't know I can't even type right now, I'm just taking trex shots to kill these things right now, I was running low and last night I was dancing with a 9ish but was trying to save my last shot (I usually only inject about 2.5 ml) I suffered through my 9 then shortly after that got hit again, it was climbing and at about 7 I injected just 1ml and it killed it. I think my plan now is to stay on the D3 10K and 3600 mg Fish oil, then just take the trex small dose as needed to kill the beast. I'm in hell................I am quite sure the next post will say something about 02, not going there again, has never worked for me NEVER, I've used it every possible way. I'm trying kudzu again. I've had 30 years of this shit and you would think they could find something, I'm guessing that I am at least half way through my cycle so I just need to hold on, there has never been a ryme or reason for these things with me, once I thought a chiropractor fixed them, once I thought schrooms worked, once I thought Kudzu worked, once I thought I hammered them so hard and so often with trex they just went away, who really knows. Sorry for the rant.

PFDN................Norm
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Re: 123 Days PF And I Think I know Why
Reply #159 - Apr 11th, 2011 at 3:01pm
 
Norm,

Sorry you're having a rough time.  What brand of calcium citrate were you taking?  Some formulations contain calcium carbonate that makes it less effective as a buffer and the calcium carbonate can easily cause a GI disturbance unless taken with meals. 

In addition, the Kirkland brand of calcium citrate most of us are using also contains magnesium and zinc.  All three of these minerals are an important part of the regimen as they act as co-factors to improve the efficacy of the vitamin D3 therapy.

I understand you've tried oxygen therapy several time without any luck, but at what flow rate? 

If you've tried oxygen therapy at ≥25 liters/minute early in an attack using one of the O2PTIMASK™ kits with a 3 liter reservoir bag without getting an abort, you may have one or more comorbid conditions that override the oxygen therapy and making the anti-inflammatory regimen less effective... 

You're not alone on this count.  There are three other heavy hitters having similar problems with the anti-inflammatory regimen.  However, all three are successfully aborting their CH with oxygen therapy at flow rates that support hyperventilation.  They think the anti-inflammatory regimen has has helped shorten their abort times.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #160 - Apr 11th, 2011 at 7:32pm
 
Hi Batch, I was a bit grumpy this morning when I made my last post, and for that I'm sorry. Anyway I looked all over and couldn't find the Kirkland brand and we do not have a costco here. I did end up at a nutrition store that had just about everything, I had my Blackberry with me and showed them the picture of the bottle they looked it up and found it so we compared the ingredients and we found the exact same thing from NOW, I/we did figure out the difference between the citrate and carbonate, this brand also has the same I'U of D3, Magnesium and zinc all the same, it could just be a coincidence that they got worse after taking the Calcium who knows. If there is one thing that I have figured out through the years for me at least is I never really know what actually works. I am still taking the D3 and the fish oil and who really knows maybe my head would be worse without it. The other thing that I know for sure is Imitrex has always killed them, sometimes I will rebound and I will shadow a lot from it but I only have about a month to go hopefully.  This might sound silly to you but the 02 thing is such a big hassle, I'm not opposed to trying it again sometime but last time I had that huge tank, hoses the newest greatest mask, bag & etc, it wasn't very portable and to top it off it didn't work and at that time 2009 I had all the new stuff. I am about half way through my cycle. As much as I don't want to suffer from the pain I think I would rather just take the trex this time around. I'll keep reading and I'll stay strong. I thank God for you and this site.

OH!! One more thing, my CH hit hard and fast but the longest one I have had this go around is about 30 min and that's a good thing, could it be the D3/Omega3  Wink

PFDN.................Norm
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Re: 123 Days PF And I Think I know Why
Reply #161 - Apr 12th, 2011 at 3:24am
 
Hi

It took me 3 months before I was pain free, with 5000 IU vitamin-D3 and 500 mg magnesium. So it can take some time to work.  Wink
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Re: 123 Days PF And I Think I know Why
Reply #162 - Apr 13th, 2011 at 4:56am
 
Just a quick update of where I am

Been taking 3000mg Omega3 and 10000iu D3 for a few weeks now, my headaches have just much less severe although I do still get them 4-5 per day, I seem to have a low level irritating headaches most of the day between the heavier pains, this seems to have happened since January however now the in between headaches seem to have gotten a bit stronger and the more severe headaches seem to have eased a couple of levels, I am just about to start verapamil at a rate of 120mg per day waiting for a prescription for Sumatripan injections, not on O2 yet, will be getting that sorted very soon if the verapamil and sumatripan dont work for me.

So my conclusion is that the D3 and Omega3 have had an impact in reducing the severity of my big hits, I will update once the Verapamil starts getting into my system.
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Re: 123 Days PF And I Think I know Why
Reply #163 - Apr 13th, 2011 at 2:44pm
 
Hi
Well this is my first post.  Have been a cluster head for over 10 years now.  I like many have spent absolutely thousands of pounds on various different treatments.  Through it all O2 was the only abortive that works for me.  No preventative has ever worked, tried Verap, Proponolol just going back to Neuro for next thing to try.

Finally as my condition has evolved (used to have one 6 week episode in June /July, now have been in a set of beast visits since early feb.) I have now found something that works!  Last week I was having attacks every 50 mins through the night about Kip 5 each time although some were Kip 7.  O2 always gets shot of mine in a max of 10 mins, sometimes literally in seconds.

Joined here a week ago, read Batch's advice and am taking the fish oil and the sodium citrate tablets, waiting on the vit D.  However since I started have gone 3 nights ago to 4 attacks, 2 nights ago to 2 attacks, and last night 1 attack.  Now as a maths teacher I understand sequences, but this is the best ever!

Am hoping against hope that I will be another success story.  Got some Ph strips, measured  my mid afternoon level, it was 6.75, then just before evening meal had a shadow, measured it then and was 6.  Downed a supermarket own brand version of Red Bull (20% of the price) and felt a lot better.  Kind of hoping that the regimen will eventually help with the shadows and day time Kip 3/4 attacks.

Thank you Batch, fingers crossed!!!!!!
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Re: 123 Days PF And I Think I know Why
Reply #164 - Apr 13th, 2011 at 2:55pm
 
I think I've had a major breakthrough.

It's been exactly a week since I started on "therapeutic" levels of everything. I'm taking the following vitamins currently:

- 2 calcium citrate tabs with Magnesium, Zinc, B6 and D
- 3400 mg's Omega-3
- approx. 7500 IU's vitamin D (between the D3 supplement, multivitamin and calcium citrate tabs)

Since last Wednesday, I've had some spotty shadows and only 1 hit worth mentioning. Also, I've slept over 6 hours consecutively a night for 7 nights in a row.

Obviously, as with everyone on the board, the cluster experience is very individualized, same thing with treatments and their efficacy. I have to say that for me personally, this vitamin regimen has been nothing short of a miracle. For the last 7 days I've felt alive again and I haven't felt this way in months.
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Re: 123 Days PF And I Think I know Why
Reply #165 - Apr 14th, 2011 at 6:01am
 
Hey I got question, how do you intake D3? it it drops or liquid tincture? I seen some D3 here with 15.000 U.I and only one is tincture but it is with Benzyl alcohol as helper regeant or however you call it.


In Poland brand name is Devikap if you could look up on net and tell me if it is safe, alcohol part made me a bit worried, as despite me being episodic, I still am afraid to drink due to my university as I don't want to piss off headache and get it now that I really cannot afford any lost time.

Thank you in advance.
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Re: 123 Days PF And I Think I know Why
Reply #166 - Apr 14th, 2011 at 1:11pm
 
My vitamin D3 is coming from caplets.
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Re: 123 Days PF And I Think I know Why
Reply #167 - Apr 14th, 2011 at 5:29pm
 
Can you give me brand name?
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Re: 123 Days PF And I Think I know Why
Reply #168 - Apr 14th, 2011 at 11:26pm
 
Radar, Primetime,

Great news.  Thanks for your updates.

Matty,  vitamin D3 (cholecalciferol) can come as a liquid, I used to get it under the brand name Drisdol and I took it with an eyedropper, liquid softgel capsules, or as a lower dose solid mixed with other vitamins or minerals.

I looked up and translated devikap… Devikap (Vitamin D3), is a liquid form of cholecalciferol  (15,000 IU / ml), 10 ml.  This liquid form of vitamin D3 should work just fine.  I would start out at a half ml (0.5ml.)/day.

You may find vitamin D3 in the liquid softgel capsules are easier to take.  Nature Made sells it's products in Europe so you may be able to order vitamin D3 over the Internet. The same with Nature's Bounty.  Both carry the 5,000I.U. vitamin D3 in liquid softgel form.  If no joy on these two brands, search the Internet for "cholecalciferol" or "cholecalciferolum" and "5,000I.U. liquid softgel capsules."

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #169 - Apr 15th, 2011 at 11:12am
 
Batch/All,
Today marks two weeks that I've been on the D3/Omega 3 regime so I'll give an update. I've been taking 10,000 IU D3, 3,000 mg Omega 3, and 1 Calcium/Zinc/Magnesium combo. Just to note, I don't take any other medications or vitamins.

For the first two days, I still had 3 attacks each day in which 1 of those attacks on each day turned into a CH (K6-7). The other attacks were either heavy shadows or K1-2s.

From the third day until now, I have been PF (minus a trigger CH one night because I sat around chlorine too long. My fault). I have heavy shadows some days and other days I don't have any at all. On a few occasions I've had very close calls where the shadow was just about to change into a CH but went away. I've noticed that the shadows are very receptive to abortive treatments considering how far I am into the cycle. I don't have 02 right now so my main abortives are caffeine, exercise, and the rubbing of my eyes. Any type of exercise that raises my heart rate significantly for 4 minutes or more has eliminated any shadow or possible CH that I have tried it on. This usually never happens mid cycle and I think its a result of this vitamin regiment.

Other Clusterheads have taken a day or two off to see if the CHs return full blast. Call me weak (or smart), but I will not be doing that because I feel so great right now. I will continue to take this regiment until my cycle is over (whenever that is!) and will start up again when the Beast returns. Thanks Batch and everyone else who has posted!
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Re: 123 Days PF And I Think I know Why
Reply #170 - Apr 15th, 2011 at 2:15pm
 
Matty AA....

I'm just using generic, grocery store brand, vitamin D3 liquid capsules. Same for the omega-3 and calcium citrate.

All the effectiveness of the name brand, without the cost.
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Re: 123 Days PF And I Think I know Why
Reply #171 - Apr 15th, 2011 at 8:31pm
 
Its been a few weeks now and I thought that I would report my personal findings. 

I have been taking 10,000I.U. D3 and 2000 mg Omega 3 with the calcium citrate +D3 with lemonade the (Batch Formula) now for a little over 2 weeks.  The beginning results were skewed because I was on a fairly lengthy stretch of high dose prednisone and depakote.  Prednisone previously had been stopping 90% of my attacks.  My goal was to try this in lieu of my depakote as I came off the Pred. My first three days of replacing the depakote with the (Batch Formula) was fantastic as I experienced 3 full pain free days.  Unfortunately as I continued to tapper off of the prednisone it was short lived and my percentage of hits have steadily increased as I decreased the prednisone dosage.  Two days ago I stopped the prednisone and my attacks are back to 100% of pretreatment.

Unfortunately I don't have the option of giving this anymore time on its own to work.  I have to provide for a family and I'm the sole income I have to be able to work.  So I've made my deal with the devil  Smileyand I'm on the prednisone again for month number 4.

Really cool though that a lot of people are getting some results with this Not sure why its not effective for me.  This cycle does seem to be more of an ass kicker than normal. Who knows maybe it will begin to work in the future.  I going to continue to take the Batch formula because I need the calcium and D3 with being on the steroids. So when this round of steroids comes down I shall re-evaluate.

PF Days to all...
Sean
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Re: 123 Days PF And I Think I know Why
Reply #172 - Apr 15th, 2011 at 9:02pm
 
Thanks Batch a lot! Will look it up and see, though Poland put D3 on prescriptions I heard last time I was to local pharmacy, so I will see if I can order it or not.

Thanks a lot for great piece of information Batch, you are great!

Matty

P.S Oh I would forgot to ask.

Lemonade you mentioned, will just squeezing lots of fresh lemons then adding few spoons of sugar then mixing it works? Or do you have some improved perhaps balanced ingridient to ingridient formula?

Though prolly I will make myself sound like an idiot Tongue Sorry if I ask for obvious things, but hey perhaps your lemonade is better than what I used to do  Grin
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Re: 123 Days PF And I Think I know Why
Reply #173 - Apr 16th, 2011 at 12:25pm
 
Hey Matty,

Good question.  I make my own lemonade and sweeten it with Splenda™ an artificial sweetener to cut down on the carbohydrates.  I use a ratio of one part lemon juice to 4 or 5 parts water and one part Splenda™.  If you don't have Splenda you can use another sweetener or sugar then adjust to taste.

The following link has a great recipe for lemonade:

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It's important to understand the rationale for drinking lemonade with the calcium citrate supplements that also contain magnesium and zinc is to elevate arterial pH.   

If the arterial pH is below the normal range, this condition tends to stimulate vasodilation and that makes the CH triggering mechanism more effective so we tend to have a higher frequency of CH and they tend to be more severe.

An arterial pH at or slightly above the normal range of 7.35 to 7.45 tends to stimulate the vasoconstriction we need to help slow down and possibly prevent the onset of a CH.

The combination of citric acid from the lemon juice and calcium citrate forms a chemical buffer that will elevate the stomach's gastric juices from a pH of 1.0 - 2.0 up to a pH of 3.9 and stabilize it at that level for 5 to 6 hours. 

I've found that taking the calcium citrate tablets washed down with lemonade or orange juice in the morning, then drinking a glass of lemonade with lunch and another with dinner has the best results.

If you take this concept one step further, you can make a few simple changes to your diet during a CH cycle that can also help reduce the frequency, severity and duration of your CH.

In general you want to eat more alkaline forming food types and cut back on acid forming foods.  The simple formula is to cut back on red meat, (eat more fish and chicken), and eat more veggies.  Staying away from foods containing gluten, i.e., bread and peanuts may also help as these two food types have a habit of stimulating inflammation throughout the body and brain…

Barry_T_Coles posted the following link that provides an excellent acid-alkaline food list.

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Hope this helps.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #174 - Apr 16th, 2011 at 2:13pm
 
Wow thanks a lot, off to shop to buy lemons and then back to do it, also will buy fresh cod and some veggies as you suggested, mhm... roasted chicken is on my mind too, I am just a bit worried if spices for roasted chicken like parika, powdered veggies and so on will fix a headache for me or not... hmmm
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« Last Edit: Apr 16th, 2011 at 2:13pm by MattyAA »  
 
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