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123 Days PF And I Think I know Why (Read 533002 times)
TheAndyT
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Re: 123 Days PF And I Think I know Why
Reply #2250 - Mar 30th, 2015 at 10:26pm
 
Batch,

So, I finally got around to getting my blood work done after a nasty throat infection that lasted too long. My test results came back as 103.0 ng/mL.  I am currently taking a daily maintenance dose of 10,000IU D3 and 400mg Magnesium along with co-factors. What should I do to tweak my D3 levels or is 103.0 ng/mL a good number?

Thanks again,
Andy
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2251 - Apr 14th, 2015 at 5:16pm
 
Andy,

Sorry to be so slow in responding.  The first question is howz the head?  If you're pain free, I'd stick with the maintenance dose of 10,000 IU/day.

This maintenance dose results in an average 25D response close to 80 ng/mL but the variation among users can vary ± 20 ng/mL depending on the body weight and body mass index (BMI). 

Obviously a 200 pound male will show a lower 25D response that a 115 lb female.  Body fat also plays a role as it can absorb 12 times the 25D serum concentration so those of us with a little extra insulation around the middle and a BMI ≥25 will have a lower 25D serum response than folks with a low BMI ≤20.

There are also seasonal variations due to incident sunlight produced vitamin D3 but that's usually around ± 8 ng/mL.  Sub-clinical allergies, flu, bacterial infections, trauma and surgery are the real movers of 25D and they can result in up to a 40% drop in 25D serum concentration.

At this point... you've got a comfortable reserve against problems like that so I wouldn't change a thing.

I would suggest another 25D lab test in a couple months.  If your serum concentration has climbed to 115  to 120 ng/mL, you might want to drop the maintenance dose to 8,000 IU/day vitamin D3 or skip taking the 10,000 IU liquid soft gel capsules one day a week. The other alternative is to take 5,000 IU/day on weekends and 10,000 IU/day Monday through Friday.

Higher 25D serum concentrations like this don't pose any problems they just increase vitamin D3 metabolism.  It's kind of like  squirting a little nitrous in the family care... A little is ok but on constant basis it runs the head pressure and temperature higher than needed... 

There are some RRMS sufferers who push their 25D serum concentration upwards of 145 ng/mL for up to six weeks at a time to get their disorder under control or to keep it under control while on travel or vacation.  They do this all the time without any problems.

The lowest and most conservative estimate of a 25D serum concentration associated with vitamin D3 intoxication is 200 ng/mL, but most of the real experts opine the real lower threshold is closer to 300 ng/mL before serum calcium goes above its normal reference range.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Apr 14th, 2015 at 5:23pm by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #2252 - Apr 14th, 2015 at 5:33pm
 
A lot of CH'ers are experiencing a higher than normal frequency of their CH this time of year and that includes a few of us on the anti-inflammatory regimen who are also experiencing some burn through hits.

There's a high probability this increase in CH activity is due to the spring pollen causing allergic reactions that flood our systems with histamines.  When that happens nearly every form of CH intervention is less effective or not effective at all.

The insidious thing about pollen allergies is they can be sub-clinical with no outward symptoms so you could be having an allergic reaction and never know it.  Pollen can also lay around the house, car and workplace for months. 

All it takes is a little movement to send the pollen airborne and it hits the nasal passages.  When that happens, mast cells in the mucus membranes start dumping histamines into the local area and bloodstream.  When the histamines reach the trigeminal ganglia, they trigger neurogenic inflammation and we're off to the races with another bout of CH.

There are other sources of allergens that are with us year round.  Any damp areas can generate mold spores and the biggest source is dust mites.  They live with us year round in bedding and pillows...  They may not be enough to trigger an allergic response on their own, but throw in a little more spring pollen and you reach a tipping point where there's enough to trigger an allergic response.

Here's my story...  I'm a chronic type and have kept my CH in full remission with the anti-inflammatory regimen (10,000 IU/day vitamin D3, Omega-3 fish oil and all the vitamin D3 cofactors: magnesium, zinc, boron, vitamin A (reinol) and the vitamin K2 complex MK4 and MK7).

I live in the Puget Sound area of NW Washington state. I started falling out of remission in mid March as soon as I returned from a stay with friends down in Key West, FL where I had been CH pain free taking 15,000 IU/day vitamin D3. 

Alder tree pollen was sifting out of the mature trees that surround our house like a dust storm that coated my black pickup turning it gray with a very sticky and heavy dusting that acts like powdered weldwood glue when the rains hit it.  See photo below.

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It took less than 24 hours after I returned home for allergy symptoms to appear and that was when I had the first outbreak of CH.  I realized what was happening so started taking vitamin D3 at 50,000 IU/day as loading doses thinking that would overpower the flood of histamine triggered by the pollen allergy.  A week of loading cut the frequency a little but not completely. I was still getting hit one or two times a night while sleeping

At that point the clue bird made a low pass and the good idea light came on bright... Treat the allergy! 

It took a little reading to identify the best treatment option and I finally settled on benedryl (diphenhydramine), a first-generation antihistamine.  I started taking it as directed at 25 mg four times a day, every 4 to 6 hours...  It took a day for the benedryl to start working, but by the second day I was back in a CH pain free state...

The rationale for benedryl is it passes through the blood brain barrier to block histamine receptors in brain cells. Benedryl doesn't stop the mast cells from releasing histamine and other cytokines, but it does help block the allergic reaction and associated inflammation.

The only downside of benedryl is it acts as a CNS depressant so I've been a bit drowsy and napping frequently...  Second- and third-generation antihistamines can't get past the blood brain barrier so don't pose a problem with drowsiness, but as they can't pass through the blood brain barrier, they would likely be ineffective in this case. 

It's been a month and so far so good.  The Alder pollen drop is over, but it's been replaced by an equally heavy pollen drop from the Bigleaf Maple trees...

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We've several 200 year old Bigleaf Maple trees near the house and they're loaded with blooms that drop a yellow pollen that collects on my pickup like finely ground cornmeal.

I've managed to cut back on the vitamin D3 to 25,000 IU/day and three benedryl tabs/24 hours... and still remain pain free...  Lesson learned!

Hope this helps...

Take care,

V/R, Batch
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« Last Edit: Apr 14th, 2015 at 5:38pm by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #2253 - Jun 15th, 2015 at 9:18pm
 
Hello Folks, time for another update. You may remember that I was trying to titrate off Verap, somewhat unsuccessfully. I upped the D3 for a while and split the magnesium into two doses, one morning and one afternoon to ease the load on the exhaust system.
Since then I have tried reducing the verap again but started shadowing. On an interesting note I cut out the D3 regimen for 2 days two weeks ago and also started shadowing. So it appears that the two are working in tandem to keep my head clear. On a very positive note I have just sailed happily through April, May and nearly June which have traditionally been peak misery time for me. Thanks again for all the effort here Batch, I suspect that this little vitamin regimen has saved me many hours of agony.
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Re: 123 Days PF And I Think I know Why
Reply #2254 - Jun 16th, 2015 at 4:20am
 
Wayne,  It seems we are both similar, I too have tried to titrate off the verapamil, only for it to hit me hard when my normal cycles were due.
I've been on the regime for nearly 2 years and presently I've managed to stay relatively pain free for the last 6-8 months, definitely skipping 3 cycles.
I don't know what levels your taking of verapamil, I'm only taking 180mg. I weened off in febuary 2014 only to go into a full cycle in April.
My neurologist recommended I stay on verapamil full time
( haven't seen her in 2 years, just my local G.P)
It seems that with the regime and a low dose of verapamil seems to be the sweet spot for me. BUT,  I'm soon to try weening off them again soon. June for me is cycle time and infact I can feel twinges going on all the time at the minute. A simple red bull is all that's needed and nothing developes from there. I'm going to wait till the end of July, when I know that's when my normal cycle is well over and then try and ween off verapamil.  This time though, I'm going to do it really slowly, last time I weened off over 2-3 weeks ( doctors instructions) this time I'll do it over 6-8 weeks. I can cut the pills in half and quarters etc etc.
Maybe I should leave well being alone ! Im pain free ! But I'ts just the need for me to try and go drug free.
all the best
GO MOOLOO'S
colin
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Re: 123 Days PF And I Think I know Why
Reply #2255 - Jun 16th, 2015 at 7:19pm
 
Hey Colin
We're in the same situation then, I'm also not going to change a thing until after July. My next cycle time is generally around December so that will giveme a few months to see how I go without Verapamil. Im on 480mg/day btw.

Cheers,

Wayne
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Re: 123 Days PF And I Think I know Why
Reply #2256 - Jun 17th, 2015 at 3:54am
 
Hi Wayne,
              O.k, 480 mg, a bit more than me, but, all I can say is from experience, the slower the better in reducing.
I'm probably picking, that you could taper off, say half, then stay on that for a while, wait, then go again.  But as they say, our doctors should be in the loop when going on or off anything,   hey good luck with it Wayne
colin
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Re: 123 Days PF And I Think I know Why
Reply #2257 - Jun 17th, 2015 at 1:50pm
 
I just want to share a little anecdotal success.

I started your D3 regiment only yesterday, today being the second time taking vitamins. Well I just got done taking a catnap. Its kind of hard not to being so sleep deprived because my CH mostly only come during sleep once I got all my triggers figured out. I woke up with the obligatory headache but it was only a kip1. By all rights it should be a kip3-4 at this point in my cycle.

It also changed my wake up call last night, for the past week my worst ones have always woken me up at 4:01 am. Last night it was it happened at 3:16 with a marked reduction in pain and duration. Unfortunately my normal CH when I woke up this morning was a little worse than usual.

It should be too soon to tell and probably is, but my cycles have been fairly consistent over the past decade, so consistent that I have usually been able to predict my peak and end date several weeks in advance.  Any change in them that I have been able to make have always been positive in shortening the cycle.

I did have hopes that I was going to be able to bust this one but no dice. That seems to work much better in my winter cycle. I stopped the last winter one dead in its tracks.

So far I am about 10 days into what would normally be a 6 week cycle without any treatment. At this rate with this new treatment I might actually be able to have a beer next friday.

I am really impressed with all the knowledge gained since I last studied on this 4 or 5 years ago. You guys have come a long ways.
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2258 - Jun 17th, 2015 at 2:51pm
 
Hey TDU,

Thanks for the update...  The anti-inflammatory regimen can work that fast for many of the CH'ers who start this regimen.

The following chart illustrates data from the online survey of CH'ers taking this regimen (March 2015 harvest).  As you can see better than 50% respond in the first week after starting this regimen.

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It may not mean too much to you at this point, but the exciting news is it appears that vitamin D3 is also entering target brain cells in the hypothalamus and trigeminal ganglia and not just 25(OH)D, the first metabolite of vitamin D3 that triggers the genetic expression we think is responsible for preventing CH.

It takes the liver roughly 6 days to a week to metabolize each dose of vitamin D3 as indicated by a maximum 25(OH)D serum concentration from a single dose of vitamin D3 that occurs 6 to 7 days after the vitamin D3 dose while vitamin D3 reaches a maximum serum concentration within 2 days of the initial dose as shown in the following chart.

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Accordingly, my thinking at this point given some CH'ers start responding within 12 to 48 hours... is un-metabolized vitamin D3 is entering target brain cells making it also responsible for the reduction in CH symptoms.

As most CH'ers are vitamin D3 deficient, i.e., a 25(OH)D lab test less than 30 ng/mL, (75 nmol/L), and as there are other major consumers of vitamin D3 and 25(OH)D within the body that compete with brain cells, it takes a day or two to fill up some of the other empty vitamin D3 storage areas.  When that happens, as long as the vitamin D3 cofactors are present, most CH'ers start experiencing a reduction in the frequency, severity and duration of their CH.

Take care and please keep us posted on your progress with this regimen.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #2259 - Jun 18th, 2015 at 5:17pm
 
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The graph is quite interesting with two peaks that in many ways do not make sense. There is a peak at 15 days and one at 31. I suspect that they are from people saying that D3 worked after two weeks and a month respectively.

Batch wrote on Jun 17th, 2015 at 2:51pm:
Accordingly, my thinking at this point given some CH'ers start responding within 12 to 48 hours... is un-metabolized vitamin D3 is entering target brain cells making it also responsible for the reduction in CH symptoms.

With the hypothesis of it working for some within 12 to 48 hours, "raw" D3 might be the cause, but there might be other things happening, especially most people showing such a rapid response being episodic.
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Re: 123 Days PF And I Think I know Why
Reply #2260 - Jun 18th, 2015 at 5:42pm
 
Hey Mike,

Your observations are spot on as is your suspected reason for the peaks in responses at two weeks and 31 days...  The rest of the distribution tracks with the profile of typical physiological responses to medications and nutrients.

I had another question in the survey that addressed the confounding factor of episodic CH'ers confusing a favorable response to the anti-inflammatory regimen with end of cycle...

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As you can see, roughly 17% of the episodic CH'ers indicated a favorable response within the last 20% of their estimated cycle length... 

Of the 17% that fell into that category, I checked and most of them indicated a 25(OH)D serum concentration at 80 ± 5 ng/mL, well within the typical response range to this regimen...  Accordingly, I suspect the confounding factor is closer to 7% for episodic CH'ers.  You be the judge.

Take care and thanks for the comments.

V/R, Batch
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« Last Edit: Jun 18th, 2015 at 5:43pm by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #2261 - Jun 22nd, 2015 at 1:11pm
 
3-foot wrote on Jun 23rd, 2014 at 9:54pm:
Batch wrote on Jun 13th, 2014 at 9:09pm:
3-Foot,

Thank you for the wonderful news and detailed feedback.  It does sound like you are having a favorable response to the anti-inflammatory regimen.  Based on your response so far, I think it's safe to say your CH symptoms will continue to diminish until you're completely pain free.

The beer and or wine test will work once you've been pain free for a week or two...  Until then, it's the temporary spikes in the serum concentration of 25(OH)D that follow each dose of vitamin D3 that are preventing your CH... 

When you've reached a therapeutic serum concentration of 25(OH)D around 80 ng/mL, that should be at the end of the 4th week on the accelerated dosing schedule, you should be home free... 

After that, a maintenance dose of 10,000 IU/day vitamin D3 plus the rest of this regimen year-round will keep you PF...

Take care and please keep us posted.

V/R, Batch


It's Monday night and I've been 100% pain free since Wednesday Morning. I am at the beginning of Week 3 on the dosage schedule as of today, so I'm taking 15k today. After 10 weeks of the worst cycle I've experienced in my 20 years of battling, it feels pretty F*&%ing great.

Thank You!


Hello all. I've been pain free since this post a year ago. I admit after it ended I tapered off the the full doses but have been taking smaller amounts.

In a semi related story I was reading that D3 is effective against sunburn. Since I planned a weekend of yard work and I had a set of Vit D and company ready to go I decided to experiment. I took a dose of 15k D3 and the recommended suppliments, K2 etc in the morning with my coffee. By 11 am I was outside and spent 6 hours in the sun without sunblock and no shirt. No burn. The next day I spent another 4 hours in direct sun with no sunblock. I am a little tan now but there is absolutely no sun burn. Normally an hour of full sun is enough to make me uncomfortably red.

Anyone else notice this?
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Re: 123 Days PF And I Think I know Why
Reply #2262 - Jun 22nd, 2015 at 3:51pm
 
Hey 3-Foot,

Thanks for the update...  The evidence surrounding the use of vitamin D3 to help prevent sunburn has been sketchy at best. Your experience adds another dimension.

Dr. Reinhold Veith has an interesting perspective on the evolution of lighter skin types as early homo sapiens migrated North from Equatorial East Africa.  Vitamin D3 is so essential for human and most mammal biological functions including reproduction, our skin makes it when exposed to the UVB in sunlight.

Accordingly, as early man migrated North from Equatorial East Africa over hundreds of generations, they lost skin pigmentation to compensate for the lower sun angle with a concomitant maintenance of essential cutaneous vitamin D3.   

If they didn't adapt with lighter skin types as they migrated to the Northern latitudes, they produced much less vitamin D3 and as a result, had poor bone formation and overall size.  Veith opines, women who failed to adapt to the lower sun angle with lighter skin types, died in childbirth due to the restricted size of their pelvic girdle birth canal and as a result, they dropped from the surviving gene pool.

Where all this gets even more interesting deals with seasonal variations in sun angle where humans and nearly all other mammals in the Northern latitudes built up more vitamin D3 reserves in the form of 25(OH)D and stored it in fatty tissue during the summer then coasted through the winter where the low sun angle is insufficient to produce the needed cutaneous vitamin D3.

Not surprisingly, conception takes place at the peak of the late summer 25(OH)D serum concentrations and birth during the following spring as 25(OH)D serum concentrations start rising again...

The following links provide some interesting reading on the relationship between cutaneous vitamin D3 production and skin type.

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The only thing I would note is the recommended 25(OH)D serum concentration of 50 ng/mL, (125 nmol/L) represents levels for normal healthy people...  As CH'ers... we're not normal as our disorder requires a 25(OH)D serum concentration range of 60 to 110 ng/mL in order to maintain a CH pain free status.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #2263 - Jun 22nd, 2015 at 7:46pm
 
Interesting, my ethnicity has been DNA verified and shown below. Definately Northern European.
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Re: 123 Days PF And I Think I know Why
Reply #2264 - Jun 23rd, 2015 at 12:48am
 
     I'm gonna blame some poor sap from England that lived 500 years ago for our present predicament. When I look at where the members on this site are from, it's got The British Commonwealth written all over it. 
      Seriously though, the ability of the D3 regimen to suppress a ch is amazing. Had my first drink yesterday... I've been PF for 3 to 4 weeks now, I'm about 7 weeks into my cycle which usually lasts 8 weeks but sometimes longer. Took about 45 minutes for a strong shadow to appear but that's it, nothing more. It seems the regimen doesn't end the cycle but it does wonders for stopping the ch's and keeping ya pain free. I'll try again in 2 weeks, I miss my Wild Turkey.

                                              Sean
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Re: 123 Days PF And I Think I know Why
Reply #2265 - Jun 23rd, 2015 at 3:50am
 
That's excellent news Sean, brilliant
I recon your spot on in your theory, the d3 doesnt stop the cycle, its still there, it only suppresses it !
I'm ( as Ive mentioned) right in my cycle time, I know its being suppressed, I can feel it there.
As far as a touch of alcohol, Geez, I miss a nice cold frothy or a Pinot, but after my first ever cycle, 3 months later I had a wee drop, not knowing I was going into another cycle, and BANG ! at a restaurant, a dozen people, I went out side and lay on the sea front grass, ruined their dinner, So that is near 4 years ago ! even though I'd love a drink, I get flashes of that night and the urge disappears !
We are planning a trip next year, either the blighty or The U.S, and if it ends up the blighty, My dream was a nice, REAL Guiness, straight from the tap ( mothers milk ).
So, I'm not letting that opportunity go, so maybe, after this cycle, I'll give it a go  Wink
great news on your progress though !
cheers
colin
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Re: 123 Days PF And I Think I know Why
Reply #2266 - Jul 3rd, 2015 at 4:56pm
 
07/01/2015 < 4 102  102   32-100 ng/mL

Checking back in. Still on the regime (mostly) D3 religiously but sometime skip the fish oil and the other pills. I am headache free still but I have always been episodic.

Batch thanks again.

Todd
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Re: 123 Days PF And I Think I know Why
Reply #2267 - Jul 3rd, 2015 at 5:09pm
 
Hey Todd,

Thanks for the update...  It's always great to hear reports like yours.

Be sure not to skimp on the magnesium...  It's the most important vitamin D3 cofactor as it supports the enzymatic processes that take vitamin D3 to 25(OH)D and on to the active hormonal form, 1,25(OH)2D3.

Vitamin D3 at the doses we take consumes so much magnesium in the above enzymatic processes that without at least 400 mg/day magnesium, you can easily get into a calcium magnesium imbalance that can cause cramps and heart flutter...

Calcium is needed during muscle contraction and magnesium during muscle relaxation...  I can always tell if I'm getting too little magnesium... I get hand and finger cramps...  They clear rapidly after taking at least 400 mg magnesium.

If you need more, split the dose by taking 400 mg magnesium in the morning and a  second 400 mg dose 12 hours later.  Dosing magnesium like this will help avoid osmotic diarrhea.

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 #2268 - Jul 6th, 2015 at 12:45am
 
You asked me for an update and I for surely owe you one Batch. This has been nothing short of amazing for me. I was almost moved to tears working my self up to make this reply.

I am still technically in cycle, though on the down slope, maybe two weeks left before its gone. This is working so good for me that I am drinking beer right now.

When I first started your therapy it immediately removed two triggers, eating a big meal and taking naps. I can do both worry free.

The frequency has been so reduced that I am averaging only one a day which is usually nothing more than a nuisance. It happens at morning wake as of today I am attributing it to low magnesium.

I did add a bit to your therapy. I did take benydryl when I had more headaches and right before bed. I am thinking of eliminating as a daily thing tomorrow.

I also added l-cysteine to it as per a the thread on this board. I figured it couldnt hurt and the mechanism of action sure did make sense to me. I am actually not positive how well it works as a daily supplement, I didnt receive it until several days after your therapy had already started working. What I believe it has done though is blocked the mechanism of action that was a trigger for alcohol.

7 days ago I drank a beer and suffered the worst of my cluster headaches since starting your therapy. The headaches came on about 3 hours after that beer and 9 hours after I took the vitamins. I got 3 of them from that one beer.

Yesterday I woke up with my normal cluster headache, well, at least whats normal these days thanks to you Batch, it was just annoying is all.

Later that day I wanted to celebrate Americas birth, with a beer. I had been noticing that the later in the day I took my vitamins the less likely I was to wake up with a headache in the morning. The situation was just like before, I ate my vitamins with lunch and the beer came much later in the day.

So I did a preemptive strike. I took a magnesium, a l-cysteine and a benydryl with my first beer and never got a headache, even after drinking 6 of them. I took the same combination before bed and was pain free upon waking up.

I am doing the same thing tonight, and so far no headache.

My biggest trigger, besides sleeping, is drinking. Right now I am drinking, IN CYCLE, and not getting a headache.


I want to thank you from the bottom of my heart Batch. This is a life changer. Ive lost a couple jobs over cluster headaches.

Thank you.


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Batch
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Control The Beast With
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Re: 123 Days PF And I Think I know Why
Reply #2269 - Jul 8th, 2015 at 2:20pm
 
Hey TDU,

Thanks for the update.  I wanted to give you a little time before commenting to see if the Benadryl made a difference...  It usually takes 36 to 48 hours while taking two 25 mg Benadryl tablets a day to be effective.

There's nothing wrong taking the  l-cysteine... You also might want to consider adding CoQ10 (for the heart) and a 3-month course of vitamin B 50 (helps the brain).

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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feisty
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Re: 123 Days PF And I Think I know Why
Reply #2270 - Aug 4th, 2015 at 7:48pm
 
Just want to update. My husband has been free of cluster headache pain since August 20, 2014 Smiley . Thank you Batch!!

He has been dealing with other things since then. Atrial fibrillation (even though his blood D levels were pretty high) started last September but seems to be calming down. No related cardiac issues or known cause. Now he's recovering from Elbow (Olecranon) Bursitis and I'm wondering if it's because he slacked off on supplements recently? Also he is having problems with his foot - swelling and pain.

Seems like it's all about inflammation  Huh . So we're getting back on the bandwagon in earnest. Allergies are an ongoing issue. We got rid of pets which may have helped, but household dust and/or mold may be a problem, as well as the entire outdoors.

Folks, if you haven't yet, give Batch's regimen a chance. It took a while to kick in for my husband, but it worked!
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Smiley wife of 48 year old husband who suffers from episodic CH ~ Batch's Anti-Inflammatory Regimen works!
 
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Zeitgeist
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Re: 123 Days PF And I Think I know Why
Reply #2271 - Aug 11th, 2015 at 9:39am
 
Hi all

It's now a little more than 4 years since I begun with D3 etc and here's a little  update.

The first year or so I was very rigorous with regards to amount of D3, Mg, Ca and Boron. In the later years I simply eat a couple of 5000 iu capsules every week or fortnight. Else than that: Begun drinking milk again, and learnt how to sleep on one of the sides.


CH Experiences:
The last four years I've had three cycles, the first 8 months into the very rigorous practice of the regimen when I took regular blood samples etc.

Noteworthy, those cycles were both shorter than in the previous 20 years+ and  attacks significantly less intense.  I fend them off with Red Bull or Imitrex injections (1/3 or about 2mg)

In this period I have some 10-15 single attacks completely out of cycle.  Rather inexplicable, and most often related to sleep disruptions, jet-lag, all-nighters and the like.

In 2010 and 2011, after 20+ years on the left side, I experienced several side shifts, both between cycles and in the midst of cycles. Now the beast  appears to have settled on the right side.

Conclusion:
Even though I still have cycles and attacks, I'm very much assured of the effect of D3. This is because the effect was more or less instant, and because the entire CH experience has changed rather dramatically. From being a major PITA in my life, and threatening my ability to do my job, CH is now more of an annoyance I handle OK. I most certainly don't fear it the way I used to.


Some last words on the regimen:  As I said, I've become rather relaxed as to the rigidness  of the regimen.  One reason is the cycle I experienced while being very specific, I lost some faith there, another reason is that I'm just not that kind of guy Smiley . I don't recommend relaxing the regimen, I just tell my story.

Stay pain free!
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-zg
 
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2272 - Aug 11th, 2015 at 5:12pm
 
Hey Zeitgeist,

Thanks for the straight forward update and candid assessment of the anti-inflammatory regimen's capacity to prevent your CH...  Your comments bring up a general topic that I think worth discussing... and that's the commonly used statements about efficacy of CH preventatives... 

"What works for some CH'ers, may not or does not work for other CH'ers."

and

"What worked well last cycle is not working now."

Being an analytical type... I'm always asking "Why?"

After nearly five years taking the anti-inflammatory regimen to prevent my CH, reading hundreds of posts, PMs, email and online survey results from CH'ers taking this regimen as well as reading hundreds of studies on the efficacy of vitamin D3 in treating a wide range of medical disorders, I've come up with a framework I think is worth sharing.

Dose-Response... There's a clear dose-response relationship between the dose of vitamin D3 and a CH pain free response.  I selected 10,000 IU/day vitamin D3 as the standard maintenance dose for a number of reasons, the first and foremost is this is the highest vitamin D3 dose the real vitamin D3 experts consider safe. 

Data extracted from posts here at CH.com and the online survey of CH'ers taking the anti-inflammatory regimen to prevent their CH indicate an average efficacy of 80% by the end of the first month of treatment.  Some CH'ers need more vitamin D3 and a few have been relatively pain free taking 5,000 IU/day.

Time-Course 25(OH)D response...  There's also a time-course 25(OH)D response relationship with a CH pain free response as serum concentrations of 25(OH)D build towards what I call the "Green Zone" of 60 to 110 ng/mL.  In other words, some CH'ers require up to a month to respond to this regimen although the majority respond within the first two weeks.

These first two factors account for a little over 80% efficacy for the anti-inflammatory regimen in preventing CH...  The other 20% who don't respond is were I've devoted the majority of my time.

There are several factors that prevent CH'ers in this category from experiencing a favorable response.

Infections, allergies and trauma/surgery are the three most prevalent reasons why some CH'ers do not respond to this regimen even with a 25(OH)D serum concentration in the green zone at or above a concentration of 80 ng/mL. 

These three factors have three things in common.  They trigger inflammation, they increase immune system activity and in doing so, place a demand on serum vitamin D3 and 25(OH)D concentrations lowering them by as much as 40%.  The net effect is a reduced capacity of the anti-inflammatory regimen to prevent CH.

We've had a statistically significant number of CH'ers post comments to the effect their CH returned or increased in frequency during viral and bacterial infections...  In most cases, increasing the vitamin D3 intake from the 10,000 IU/day maintenance dose up to 20,000 or 50,000 IU/day for a week usually resulted in a pain free response.

This Spring I discovered that taking Benadryl (Diphenhydramine) worked effectively in lowering the histamine inflammatory response due to an allergic reaction to tree pollen and that this made the anti-inflammatory regimen effective enough to stay CH pain free.  Several CH'ers have reported a similar response after starting Benadryl.

I cracked a large filling on an upper molar a couple weeks ago.  The molar was otherwise healthy with no evidence of periodontal disease six months ago during an annual dental checkup.

This molar had been a candidate for extraction and implant following a bone graft for the last four years due to looseness caused by a filling that allowed food to wedge between it and the adjacent tooth forcing it aft when chewing.  A proper restoration eliminated the gap and the anti-inflammatory regimen with vitamin K2 stopped the looseness.  My dentist was amaze when he checked molar for mobility and found it sound.

Last week the tooth started to become tender while chewing so I went in to have it checked.  The X-ray indicated an infection had set as the crack had extended through the silver amalgam filling and into the lower crown splitting one root so they put me on oral penicillin and scheduled the needed procedure for later this week.

Two weeks ago when the molar cracked I'd been on a maintenance dose of 10,000 IU/day vitamin D3, down from an average of 20,000 IU/day during the heavy pollen earlier this summer.  Within a few days of the molar cracking and the tenderness setting in, I noticed the lymph nodes in my neck were shot up and swollen...  About that time, the beast started prowling around so I upped the vitamin D3 back up to 15,000 IU/day.  This increase in CH activity was clearly due to the tooth infection...

Moreover, within 24 hours of starting the penicillin, the tenderness while chewing subsided and so did the swollen lymph nodes in my neck.  Two days after starting the penicillin, I was back at 10,000 IU/day vitamin D3 and the beast has been conspicuously absent.

Edited to add... I'm also taking a probiotic to counteract the loss of friendly colonies of GI tract bacteria caused by the penicillin.

Bottom line and contrary to popular belief, a tooth problem can lead to an increase in the frequency and severity of CH... particularly if its infected...  See your dentist for regular checkups.

Getting back to the framework...  It really doesn't matter what CH'ers take as a preventative... If there's any other comorbid medical condition that results in inflammation, (and that's nearly all of them...) the preventative will be less effective... if it's effective at all.

Take care,

V/R, Batch
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« Last Edit: Aug 12th, 2015 at 8:21am 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
pete_batcheller  
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Hoppy
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Re: 123 Days PF And I Think I know Why
Reply #2273 - Sep 2nd, 2015 at 3:13am
 
It's the 1st day of Spring here down under, and no sign of the Beast, which I put it all down to the Vitamin D3 remedy, thanks to Batch, for giving me my life back.

Forever in your debt.
Hoppy
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blacklab
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Re: 123 Days PF And I Think I know Why
Reply #2274 - Sep 3rd, 2015 at 2:05am
 
Ditto Dr Hoppy !

But I'm going to purchase some of that Benadryl as Batch has recommended to be on hand just in case.
Starting to think about the problems I've sort of always had in that department, sinus type issues, So I'm going to add that to my collection of concoctions and see what happens.
glad to here your still pain free

colin
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