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123 Days PF And I Think I know Why (Read 445295 times)
blacklab
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Re: 123 Days PF And I Think I know Why
Reply #2000 - Aug 18th, 2014 at 11:31pm
 
Hi batch,  yep pretty clear !
    as with previous posts, im just trying to "tweek" the regime to see if additional supplements is the answer for me to go pain free. Ive been at 203 nmol and 230 nmol and the shadows and break thru attacks came.
even though im going to get tested next week and my cycle, apart from one night when it came back, which seems to have been its final " parting fling " has now gone, its always going to be hard to say what works until another episode rears its damn head.
So, the plan is..... get back down to 80ng ( 100 nmol) as previously in January, being at this level and titrating up heavily for 2 weeks killed the shadows dead in there tracks !
.....  split the magnesium ( as I am doing now) which after 3 days, so far is doing ok,  start taking more calcium, other than the multi ( 220mg) so my magnesium intake will match my calcium intake and lastly, lift my Vit A intake up a touch to make sure im getting sufficient, but certainly not above the recommended daily intake.
When I get my Vit d 25 ohd done next week, i'll also ask the doctor for my B, A and magnesium to be tested as well, just for interest.
Im figuring Batch, that if I pay attention to detail now, then should a cycle return, im in a better position to make changes from there, knowing what my actual levels of vit D and supplements are.  got to be an answer there somewhere   Grin
  just one parting question Batch, it took 2 weeks of titrating up, 20,000iu per day with a once a week loading dose of 50,000iu, to go from 203 nmol to 233 nmol, how many days would it take without taking vit D to drop that much ? ive heard you talk of half life etc but not really understood properly, and I no you occasionally do this for "scientific" reasons  Grin    but would be interested in your opinion on this.
sorry for piling on the questions, I seem to be turning into a "problem child "
thanks in advance
colin
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« Last Edit: Aug 18th, 2014 at 11:35pm by N/A »  
 
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2001 - Aug 19th, 2014 at 5:22am
 
Colin,

The simple answer to your question is stay at a 25(OH)D serum concentration of 200 to 230 nmol/L year round.  That way there's no need to titrate up on vitamin D3 or take loading doses when your next cycle comes around.  When it does... it will likely be a non-event and you'll sail through it PF.

200 to 230 nmol/L is a safe and healthy serum concentration of 25(OH)D so there's no need to let it drop.  The health benefits are numerous and too great to ignore.

Take care and please keep me posted.

V/R, Batch
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blacklab
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Re: 123 Days PF And I Think I know Why
Reply #2002 - Aug 19th, 2014 at 8:01am
 
Hi batch,
in January, I shadowed at 200nmol but titrating up got rid of them, last month at 230 nmol I shadowed and titrating up didn't work and a cycle broke thru,  so im picking i'de be at around 260 plus at the minute.
so I either stay there, or go back down to 200 nmol where if the shadows come titrating seemed to work !
or if I do show about 260nmol, then maybe that's where I need to be.  just unsure what level to stay at....
cheers
colin
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« Last Edit: Aug 19th, 2014 at 8:10am by N/A »  
 
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2003 - Aug 19th, 2014 at 7:16pm
 
Colin,

Good questions...  First things first... I've looked over your posts and don't see any indication of vitamin B 50... Have you started the three month course of vitamin B 50?

Keeping your 25(OH)D between 200 and 250 nmol/L would appear to be the best course of action.

Take care,

V/R, Batch
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« Last Edit: Aug 19th, 2014 at 7:22pm 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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blacklab
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Re: 123 Days PF And I Think I know Why
Reply #2004 - Aug 20th, 2014 at 4:09am
 
Hi batch, yes, back in April,( my last blood test )  I took a month of Blackmores  mega B,  which is the nearest thing down under  to your b 50.
reason I only took it for a month, is that my doctor always tested my vitamin b12 with every blood test, It was rising quite sharply every three months just taking the multi and was at just under 600 pmol/L in febuary, but I still took a month of mega B anyway. I would definitely be well over the top range ( 700 pmol/L ) now after a month of mega b.
It was interesting in the fact that, just taking the multi pill from the regime, my b12 was rising over 200pmol/L every 3 months. she also does folate, which im 3 times there deficiency level 945 nmol...
so I was picking 1 month would have been enough considering where my levels were.......  ?
colin

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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2005 - Aug 20th, 2014 at 6:37pm
 
Colin,

It looks like you have the bases covered with respect to the vitamin B 50.  That leaves diet after tuning the rest of the vitamin D3 cofactors.

Cutting out sugar and limiting or eliminating glutens, then adding GOMBS to your diet may help.  Greens, Onions, Mushrooms, Beans-Berries and Seeds-Nuts...  A handful of each a day should be sufficient.

Take care and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #2006 - Aug 22nd, 2014 at 6:42pm
 
After the Relpax kicked in last night, I joined this forum and read most of this thread. Soon as I was able this morning, I was off to the health food store for some D3 5000IU and some 1200mg fish oil☺. Spent most of the day today reading what I didnt read of the thread last night.

Have to say im excited to try the regime as nothing else other than hard percriptions has worked for me....of course I've also been misdiagnosed everytime I've visited a doctor for my episodic clusters since they started when I was in the 7th grade. Im now 28 and it wasnt until about 3-4 years ago I discovered what I actually had, clusters!

My attacks are about 5-6 weeks long every other year. 99% of the time the headache starts about 20 minutes after I wake up every morning for work. I take a few pills, suffer for about an hour and a half, then im good for the rest of my day. Do this for 5-6 weeks a year, either in late winter/early spring or late summer/early fall, then im clear for a year to 2 years....then it starts all over again...same pain...same time...same everything.

Anyway, I didnt have CHs earlier this year, so I knew I would later this year. Sure enough, 2 weeks ago on Monday morning I knew they were coming soon...Tuesday morning it hit like a rock. Never had them hit in August before, but none the less they are here. 

I'll be starting the regime with my supper here shortly. With 3-4 weeks left of my cycle I have high hopes for some relief. Not sure I can do the magnesium right away. I tried 250mg of magnesium oxide last week as my doctor told me it could help with migranes😈. After reading around some first, I figured I'd have nothing to lose by trying it. Both days I had a dull headache all day long just off 1 250mg in the morning....not a major deal like the clusters, but I didnt like it and it showed no positive results by itself.

Im gonna start with fish oil and D3 and go from there.

Glad to be part of the forum and I'll be back!
Special thanks to Batch as well!
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dauber
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Re: 123 Days PF And I Think I know Why
Reply #2007 - Aug 23rd, 2014 at 12:10am
 
Batch, I saw you mention vitamin D3 allergy in another post. Have you ever corresponded with someone who has had that very unfortunate problem? What do you recommend that a CCH sufferer with a D3 allergy do to rectify the problem? Are there alternatives? Is there a way to cancel out the allergic reaction so that D3 can then be taken safely with no hives or itchy swelling throat? To me that is a million dollar question.
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2008 - Aug 23rd, 2014 at 1:54pm
 
Hey Dauber,

Great question. The first thing I would suggest is find an immunologist or endocrinologist expert in treating patients with vitamin D3 deficiencies...  I would also hold off on taking vitamin D3 supplements... but take the rest of the anti-inflammatory regimen.

A key discriminator if a vitamin D3 allergy is suspected, is cutaneous vitamin D3...  In other words, if exposure to the UVB in sunshine without sunblock does not produce an allergic reaction, look for another cause of the allergic reaction and try to get as much sunshine as possible without sunblock.

Hope this helps.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #2009 - Aug 23rd, 2014 at 6:05pm
 
Sledgehammer

Welcome to the anti-inflammatory regimen...  If there's no reaction to the first dose of vitamin D3, check out the vitamin D3 loading schedule at the following link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

It's about half way down...

Take care and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #2010 - Aug 24th, 2014 at 11:12am
 
I believe its already working!  I took 5000IU on friday with no reaction.  Saturday morning I took 10000IU with breakfast. Had a faint CH on the way to daughters 9:00AM soccer game....stopped at store and grabbed a Monster Energy drink with Turine and it knocked it out less than halfway through the can...humm never happened that fast before.  Then about lunch yesterday I had another faint CH, Energy drink took care of it too. At supper I took 10000IU more of D3 for a total of 20,000 yesterday....doses 12 hours apart. Also had 4 michelob ultra last...usually after 1 or 2 they trigger a CH, but none last night.

This morning I took 10000IU with breakfast.  Not even a faint headache today.  Cool

We'll see what the next few days hold.
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Re: 123 Days PF And I Think I know Why
Reply #2011 - Aug 25th, 2014 at 3:05pm
 
Doing my happy dance because something is working.  Smiley

Weeks 1 & 2 during accelerating loading doses:
2-3 attacks per night
Week 3:
1 attack per night
Week 4:
3 pain-free nights
Week 5:
5 pain-free nights

My husband is starting to become himself again. Thank you Batch.
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Re: 123 Days PF And I Think I know Why
Reply #2012 - Aug 25th, 2014 at 8:57pm
 
Hey everyone!  It's been a bit since I've posted. (Which is a good sign)  Aside from the insurance company denying coverage for my wife's MRI, (different thread altogether), everything else is going great.  Today marks 28 straight days PF!  After 2 weeks she had a beer, (I was nervous), and was fine.  Since then she's had a beer, 2 beers, a few glasses of wine, and all is well!!

This past weekend we went out of town for 3 days and she missed the regimen 3 days in a row. (We left the vitamins at home and honestly didn't even realize she was skipping it until the 3rd day)  No pain at all but we restarted the regimen tonight.

Frankly this doesn't even cross our minds anymore. (Which is amazing considering we were almost a month straight getting NO sleep because of these things)  I know its strongly recommended that she get a D3 test, but she started a new job and she has ZERO extra time to go in for a physical.  We will get her one as soon as we possibly can.  In the meantime, our priority is her well-being, which she has right now.

Just like expected the HA Specialist said that the vitamins were probably just a placebo effect.  (The same specialists that said women couldn't get cluster headaches)  Either way, we are glad she is doing well now.  We might knock the D3 down to 5,000iu and the Magnesium Citrate down to 250mg, (Those things are horse pills, and expensive), just to see how she does.  If these are indeed CH then it appears she may be out of cycle along with the help from the vitamins. (Or else I imagine they might have reappeared after 3 days of no pills)

Thanks again everyone for the help.  I don't want to abandon everyone that has helped, but man do I hope that we don't have to go through this again.
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Re: 123 Days PF And I Think I know Why
Reply #2013 - Aug 26th, 2014 at 2:48am
 
Hi mjedwards,
that is great news and i enjoyed reading your post as it proves once again that Batch's D3 regimen is the way to go. Batch probably wouldn't recomend going down to 5000iu/day D3, especially that soon after starting the regimen. I know that if i reduce my D3 intake from 10000iu/day, the beast returns. I did try when i started the regimen and I learned my lesson, it's 10000iu/day now and happy to stay there.
All the best
Smiley
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feisty
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Re: 123 Days PF And I Think I know Why
Reply #2014 - Aug 26th, 2014 at 10:45am
 
Mjedwards409 wrote on Aug 25th, 2014 at 8:57pm:
I know its strongly recommended that she get a D3 test, but she started a new job and she has ZERO extra time to go in for a physical.
We did it by mail, for the same reason:
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So pleased this is working for your wife!
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« Last Edit: Aug 26th, 2014 at 10:46am by feisty »  

Smiley wife of 48 year old husband who suffers from episodic CH ~ Batch's Anti-Inflammatory Regimen works!
 
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Re: 123 Days PF And I Think I know Why
Reply #2015 - Aug 29th, 2014 at 1:38pm
 
Just wanted to sign in and give my one week update since starting the regime.

So far so good! I did have a couple shadows, but nothing that I couldnt deal with like usual. I took 20000 IU a day for 3 days, then cut it back to 10000IU until I can get my test done. I work outside and have my whole life, so I didnt want to over do it on the D3. Im also still on 2400mg of fish oil a day and 1 multi vitiam.  Im 28 years old and have never took any vitiams before in my life....always been healty as an Ox and figured I didnt need them.


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Re: 123 Days PF And I Think I know Why
Reply #2016 - Aug 31st, 2014 at 11:25pm
 
Hello all! Long time lurker, but this is my first post on these boards. Thought I would share my experience on the regimen thus far and possibly get some advice.

Started the regimen about 10 days ago and didn't do the loading dose at first, just taking 20,000 IU of D3 with the rest of the supplements. Headaches got worse for the first few days and I believe it was possibly due to the calcium interfering with my verapamil. So I eliminated the calcium as I had seen others with the same problem do. Felt some relief after a couple days and then decided to do the 50,000 IU loading dose on day 6. Had a pretty good following day, but that may have been coincidental. And the past couple days have pretty much returned to normal for me, not much improvement.

I know I need to to get my blood work done so I can find out where my vitamin d levels are, and I am going to work on getting that done this week. But anyway, I guess my biggest question is if I could try another 50,000 IU loading dose sooner, as that seemed to have possibly helped me a few days ago.
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Re: 123 Days PF And I Think I know Why
Reply #2017 - Sep 1st, 2014 at 2:21am
 
Hey Fitzer, if I remember correctly,  Batch recommends 500000 to 600000 iu D3 over the 1st month of the regimen so as to build it up to a therapeutic level.
When I started the regimen, there was a change in the patterns of my headaches, they even changed side for a while. It sounds like the regimen is having some effects on you so you could be one of the 80% for whom it works.
If you're taking 20000 iu/day, you could take 1 loading dose/week for 3 weeks, that would bring you to 600000 iu in a month.
All the best
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Re: 123 Days PF And I Think I know Why
Reply #2018 - Sep 2nd, 2014 at 9:11pm
 
feisty wrote on Aug 25th, 2014 at 3:05pm:
Doing my happy dance because something is working.  Smiley

Weeks 1 & 2 during accelerating loading doses:
2-3 attacks per night
Week 3:
1 attack per night
Week 4:
3 pain-free nights
Week 5:
5 pain-free nights

My husband is starting to become himself again. Thank you Batch.
Husband has been pain free for 2 weeks now  Grin

Question: I know this would be very hard to tell, but does anyone have experience to comment on how one might tell the difference between a cycle ending "naturally" vs ending due to the D3? In my husband's case the cycle didn't end "early", but the cycle itself was so much harsher and at a different time of year than previous ones that it's hard to compare.
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Re: 123 Days PF And I Think I know Why
Reply #2019 - Sep 3rd, 2014 at 1:32am
 
feisty wrote on Sep 2nd, 2014 at 9:11pm:
Husband has been pain free for 2 weeks now  Grin

Question: I know this would be very hard to tell, but does anyone have experience to comment on how one might tell the difference between a cycle ending "naturally" vs ending due to the D3? In my husband's case the cycle didn't end "early", but the cycle itself was so much harsher and at a different time of year than previous ones that it's hard to compare.


First off, great news on your husband being pain free for 2 weeks, hope the whole family is enjoying the difference it makes.

As to telling the difference between the end of a cycle and it being the D3 that is effective there is probably only one way to tell which is to stop the D3 and see if the pain returns. I can imagine that your husband might not be too keen to try this option.
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Re: 123 Days PF And I Think I know Why
Reply #2020 - Sep 3rd, 2014 at 3:04pm
 
Mike NZ wrote on Sep 3rd, 2014 at 1:32am:
First off, great news on your husband being pain free for 2 weeks, hope the whole family is enjoying the difference it makes.
Thank you Mike. We are enjoying the difference...it is disturbing how much energy CH takes, and really great when that energy is liberated Smiley .

Mike NZ wrote on Sep 3rd, 2014 at 1:32am:
As to telling the difference between the end of a cycle and it being the D3 that is effective there is probably only one way to tell which is to stop the D3 and see if the pain returns.
I'm assuming that wouldn't work as my husband is an episodic sufferer, and he typically only gets a cycle once a year (although he may have had two "shadow-only" atypical cycles last fall/winter).
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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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Re: 123 Days PF And I Think I know Why
Reply #2021 - Sep 3rd, 2014 at 4:25pm
 
OK, I could use some help with figuring out whether the Anti-Inflammatory Regimen may be causing a symptom for my husband. Yesterday, he said that he had woken at 3 AM with heart palpitations (unpleasant awareness of his heart pounding) for the previous three nights.

A couple of years ago he did have a doctor notice a heart sound with a stethoscope which makes me wonder if he has Mitral Valve Prolapse, but that has not been diagnosed, and he has not regularly had heart palpitations. He started the Regimen July 21, and had his last headache Aug 20. He is not taking any medications and he can't think of any other thing that has changed recently.

I found these anecdotes:
  • CrankieFrankie discontinued the Regimen after getting anxiety and heart palpitations:
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  • Articles about heart palpitations being triggered by D3 supplementation with inadequate magnesium:
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    Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Could lack of magnesium combined with high Vitamin D3 be causing night-time waking with palpitations? I see that my husband's magnesium dose is a little low (375 mg) compared to Batch's recommendation (400-500 mg).

My husband is taking:
  • Centrum Men 50+ | Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (includes 125 mg magnesium)
  • Jamieson Magnesium 250 mg
  • Nature's Bounty, Ultra Strength D3-10,000 IU
  • Jamieson B Complex 50 mg
  • Life Extension, Super K with Advanced K2
  • Jamieson Vitamin A 10,000 IU
  • Nature's Bounty Omega-3 Fish Oil 1000 mg
  • Now Foods, Boron 3 mg
  • Jamieson Probiotic 10 Billion
  • Jamieson Exxtra-C 500 mg

Any help with this would be appreciated.
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« Last Edit: Sep 3rd, 2014 at 4:27pm by feisty »  

Smiley wife of 48 year old husband who suffers from episodic CH ~ Batch's Anti-Inflammatory Regimen works!
 
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Re: 123 Days PF And I Think I know Why
Reply #2022 - Sep 4th, 2014 at 2:18pm
 
Hey Ksenia,

Glad to hear you're doing the happy dance and that your husband is enjoying the benefits of the anti-inflammatory regimen.

The short and belated answer to both of your earlier questions in this thread is yes... The anti-inflammatory regimen as your husband was taking it, was likely contributing to his heart palpitations... and insufficient  magnesium was likely the culprit. Please let me explain my answers.

The problem is your husband was not getting enough magnesium compared to his calcium intake.  This regimen calls for a minimum of 400 mg/day.  What happened was the extra vitamin D3 he was taking during the loading schedule was consuming the available magnesium, taking it out of the blood serum solution...

That created a calcium - magnesium imbalance with more calcium than magnesium in the blood serum.  As calcium is essential in muscle contraction and magnesium is equally essential in muscle relaxation, your husband's heat muscles were not relaxing fast enough and this was more than likely the cause of his heart palpitations.

The solution is simple if this happens again...  Have your husband take a second 250 mg Jamieson Magnesium tablet in the morning and don't change anything else.  I'm assuming your husband is taking the rest of the regimen in with the evening meal.  Splitting the magnesium doses by 6 to 8 hours should help prevent osmotic diarrhea... loose as a goose... and stop the palpitations.

Attributing causality to the cessation of your husband's CH after starting the anti-inflammatory regimen as an episodic CH'er is always a problem when that cessation occurs near the end of a "normal" cycle.  In other words, was it the regimen or just end of cycle?

The best way of determining causality in this case is to have your husband stay on this regimen year round.   That way when the next cycle comes around it should be a non-event.

Staying on this regimen year round has many other health advantages that are too good to pass up.  The risks of prostate cancer, Alzheimer's and a long list of other health issues are significantly reduced if people maintain a 25(OH)D above 60 ng/mL.  Have you started this regimen?

MJ, regarding the HA Specialist saying your response to this regimen was due to a placebo effect...  Horse Feathers! 

The placebo effect for cluster headache is very low compared to other medical problems...  for obvious reasons.... You can't wish away CH or prevent them with sugar pills...

With a raw efficacy of 60% for a sustained pain free end point response to the anti-inflammatory regimen in preventing CH, this response is well beyond the highest possible placebo effect in CH of 14% to 43%.  The lowest value was reported using the strict endpoint; cessation of headache attacks.  Nilsson Remahl AI, Laudon Meyer E, Cordonnier C, Goadsby PJ. Placebo response in cluster headache trials: a review. Cephalalgia. 2003 Sep;23(7):504-10.

In other words... the odds are better than 4 to 1 the cessation of your CH was due to the anti-inflammatory regimen.  Show the above link to your HA specialist...

For the old timers reading this... you'll note that the good doctor Peter Goadsby was a contributor in this article.

Take care and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #2023 - Sep 4th, 2014 at 4:00pm
 
I appreciate your reply Batch!

Your explanation of the magnesium-calcium-palpitations connection makes sense. I will up my husband's magnesium dose and see if he continues to get palpitations. I'll bring it up to a daily dose of 500 mg (instead of the current 375 mg).

I am encouraging my husband to stay on the Regimen for over a year - then we will know for sure if the Regimen is working. I suspect it is working because I think that the reason that he had a "shadows-only" cycle last fall was that I was supplementing him with D3 (at lower doses), but I stopped so the CH came back this summer. Also, the pattern of how my husband's CH declined was so correlated to the loading schedule of the D3 in the Regimen more recently. I am eager to see what his serum level was at the end of the 4 weeks (waiting for results).

I am taking the Regimen (5000 IU D3/daily) and my children are taking a modified version too! I'm a true believer not just because of my husband's CH being gone but because of all the research that Batch, and Stasha Gominak, and other health advocates have presented. My son has ADHD, sleep issues, and chronic back pain - all of which have been show to be correlated with D3 in various studies. So I'm optimistic.

It is really cool that the placebo effect has been quantified for CH - this is really useful info for those who want to evaluate treatments.
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« Last Edit: Sep 4th, 2014 at 4:01pm by feisty »  

Smiley wife of 48 year old husband who suffers from episodic CH ~ Batch's Anti-Inflammatory Regimen works!
 
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sledgehammer
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Posts: 11
Re: 123 Days PF And I Think I know Why
Reply #2024 - Sep 5th, 2014 at 1:55pm
 
2 weeks on the regimen, I think my cluster cycle is over! I been taking 10,000IU of D3 for the last week and couple of days, haven't even had a shadow at all. I drunk several alcoholic drinks on Labor day weekend and not even a hint of a headache.

I'm going to cut my D3 back to 5000IU tomorrow and see what happens.  I'm still on the 2400mg of omega fish oil and Centrum multivitamin.



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