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123 Days PF And I Think I know Why (Read 445312 times)
feisty
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Re: 123 Days PF And I Think I know Why
Reply #2025 - Sep 5th, 2014 at 6:47pm
 
That's great sledgehammer Smiley . Don't forget that the Regimen includes boron and vitamin K2 (see the link in my sig line).
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Mike NZ
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Re: 123 Days PF And I Think I know Why
Reply #2026 - Sep 5th, 2014 at 6:48pm
 
sledgehammer wrote on Sep 5th, 2014 at 1:55pm:
2 weeks on the regimen, I think my cluster cycle is over!


Is it over or is the D3 just doing a great job as a preventive?
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feisty
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Re: 123 Days PF And I Think I know Why
Reply #2027 - Sep 6th, 2014 at 2:56pm
 
Husband took 500 mg of magnesium the past two dinners, but had unpleasant heart pounding sensations last night. He seems to tolerate 500 mg in one dose, digestion-wise.

I am going to switch the type of magnesium. His current supplement is a "magnesium complex source of oxide, malate and glycerophosphate". I've read, however, that magnesium oxide has only a 4% rate of absorption - so maybe rather than upping his dose a better formulation would be good.

I'm going to try this brand:
Doctor's Best, High Absorption Magnesium, 100% Chelated, Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
"Albion" process chelation used for that supplement (and some others) is thought by some to have the best absorption with minimal digestive issues.
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2028 - Sep 6th, 2014 at 4:01pm
 
Hmmm...

I'm a little uncomfortable with the continued heart pounding after upping the magnesium dose to 500 mg/day...  The magnesium formulation your husband is presently taking sounds fine...  That said, the more expensive chelated magnesium formulations claim better absorption with fewer lower GI tract disturbances.

I've been taking the Nature Made 400 mg liquid softgels for over two years...  They're magnesium oxide but the magnesium is already in solution and absorption appears more than adequate to me.

If this condition continues... a trip to your husband's PCP or cardiologist and some blood chemistry tests would appear in order.

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 #2029 - Sep 6th, 2014 at 9:14pm
 
feisty wrote on Sep 5th, 2014 at 6:47pm:
That's great sledgehammer Smiley . Don't forget that the Regimen includes boron and vitamin K2 (see the link in my sig line).


Thanks for the reminder! I have an opointment to get my blood work done, but its still a few weeks out. I dont want to overdo it until I see where Im at.
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sledgehammer
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Re: 123 Days PF And I Think I know Why
Reply #2030 - Sep 6th, 2014 at 9:23pm
 
Mike NZ wrote on Sep 5th, 2014 at 6:48pm:
sledgehammer wrote on Sep 5th, 2014 at 1:55pm:
2 weeks on the regimen, I think my cluster cycle is over!



Is it over or is the D3 just doing a great job as a preventive?


Could be either-or. In the past, my cycle has lasted 4 to 6 weeks.  I started the D3 regimen 2 weeks into my cycle. Only had a couple faint shadows the third week, which was the first week on the regimen. The fourth week and second week on the regimen has been totally pain free....which was yesterday. Today starts the first day of my fifth week.
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2031 - Sep 7th, 2014 at 1:38am
 
Sledgehammer,

It really doesn't matter at this point if the cessation of your CH was due to the anti-inflammatory regimen or end of cycle.  The important thing is being pain free.

The best indication it was the regimen that got you pain free is to stay on this regimen at a maintenance dose of 10,000 IU/day vitamin D3 year round.  That way when your next cycle comes around it will likely be a non-event.

The following chart illustrates data submitted by episodic CH'ers who took part in the online survey of 127 CH'ers taking the anti-inflammatory regimen to prevent their CH.  It illustrates where in their "normal" cycle the cessation of CH occurred.

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You decide...

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 #2032 - Sep 7th, 2014 at 6:57am
 
I appreciate all your help, Batch!

I have no problem taking 10,000IU a day if that's what it takes, but I'd like to get my blood work done first before I take that much everyday.  I work outside in the sun everyday, and on the lake in the sun atleast 1 day a weekend.....I find it hard to believe my D3 levels would be very low with that much sun exposure, but I'll never know till my blood work is done.

My great grandfather on one side was full blooded Cherokee Indian. I have the same dark skin that he had. I've read that darker skinned peoples body naturally produce less D3 from the sun because of the pigment in their skin.....so that could be part of my answer.

I've read the symtoms of being D3 deficient, and most of them are me.

On top of the Anti Inflammatory Regimen, Ive also changed the way I eat somewhat. I've never been a healthy eater at all. Also I think I stay borderline dehydrated 80% of the time. I've drank more water in the last 3 weeks than I have all year.

One other thing and Ill quit rattleing. My lovely wife has been great through all my cycles, not sure if I could make it through sometimes without her. Anyways, we were talking the other day, I have lower back pain, sometimes not bad at all and sometimes I cant get out of bed on my own. It may just be in my head, but seems like the back pain is worse around my cluster cycle...or just right before it hits. I cant exactly remember this to be true years ago, but I know for sure it is true the last few years. 6 weeks ago, I got down bad in my lower back, for no reason at all. 1 week later my clusters started. I started the  Anti inflammatory Regimen, and both got better. No back pain and no clusters for 2 weeks.
humm Smiley

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Re: 123 Days PF And I Think I know Why
Reply #2033 - Sep 8th, 2014 at 2:17pm
 
Hey Sledgehammer.

Thanks for the additional info...  CH and most back pain problems usually have something in common...  inflammation.

Reducing the neurogenic inflammation in and around the trigeminal complex is not much different than reducing the inflammation between the vertebra in the spinal column...  Both result in a cessation or significant reduction in pain.

This the biggest reason why I called this regimen anti-inflammatory. 

While you're at it, get your wife started on this regimen...  The health benefits are too good to ignore.

My wife has been taking this regimen with 15,000 IU/day vitamin D3 since December of 2010.  She had been a chronic migraineur for over 20 years at that point...  She hasn't had a singe migraine headache since then.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #2034 - Sep 8th, 2014 at 9:31pm
 
Batch wrote on Sep 6th, 2014 at 4:01pm:
I'm a little uncomfortable with the continued heart pounding after upping the magnesium dose to 500 mg/day...

Yeah, we are too. The pounding was ongoing yesterday. We decided to discontinue the Regimen as of today to see if that stops the heart symptoms. If the pounding continues we will know that it's not related to the Regimen at least. I will continue to push for a visit to the doctor's office but he continues to claim that he can't get away from work.

In other frustrating news, I found out that the Vit D test results that took 3 long weeks seems to have been botched or something?? We did the blood spots correctly. I got this reply:
Quote:
Thank you for your recent blood spot card submission.  As part of a quality check process at [Purity Laboratory], your test was chosen to duplicate.  Unfortunately, there was not enough blood on the test to complete the process.  They have asked that you re-submit a new blood spot test card for this quality check. [then later] Thank you for your call today.  I spoke with the lab, and unfortunately, at this point, I cannot give you your husband's results.  I also spoke with our director who looked into the matter as well and could not get any additional information for me to pass on.  My deepest apologies for this extreme inconvenience.  I wish there was something we could do for you right now; there is a slight chance they will be able to release the results after additional testing for that batch, but I will not know more about this until later this week.

That seems really odd to me. It makes me wonder if his test result was unusual and they wanted to confirm? I really wanted to know THAT level because that was very close to when he became pain free. Also, if we discontinue his levels may drop and then we will lose that reference point Sad . I've asked for my money back as I don't have much confidence in their procedures if they are going to botch such a simple thing and take so long to do it.

I don't know if I should fill out the Survey without the test results?

I'll keep you posted about the palpitations and whether they turn out to be related to the Regimen or not.
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« Last Edit: Sep 8th, 2014 at 9:36pm 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 #2035 - Sep 9th, 2014 at 1:48am
 
Feisty,

I concur with stopping the regimen for a few days to see what happens.  The 25(OH)D half-life is roughly two weeks so your husband's serum concentration of this vitamin D3 metabolite will drop fairly rapidly.  How much vitamin D3 was your husband taking each day?

If the pounding goes away, restart the regimen with just 5,000 IU/day vitamin D3 plus 500 mg/day magnesium... and nothing else to see what happens.

The blood spot test flumux response is confusing.  They should send you another home test kit at no cost.

Take care and please keep me posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #2036 - Sep 9th, 2014 at 12:23pm
 
Batch wrote on Sep 9th, 2014 at 1:48am:
How much vitamin D3 was your husband taking each day?
He was taking the standard 10,000 IU.

If his blood level drops rapidly then we will never know what actually worked for him in terms of serum level because of the test screw up Sad . It's quite a slow process to even get their blood spot card in the first place. Annoyingly, there's a lab near here that does the test, but he would need a doctor's referral for the privilege of paying for the test himself - which is bizarre - and my husband can't make time to see the doctor.

Batch wrote on Sep 9th, 2014 at 1:48am:
If the pounding goes away, restart the regimen with just 5,000 IU/day vitamin D3 plus 500 mg/day magnesium... and nothing else to see what happens.
Sounds like a plan. I'll keep you posted and thanks very much for your input.
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Re: 123 Days PF And I Think I know Why
Reply #2037 - Sep 9th, 2014 at 11:08pm
 
Feisty,

Don't worry about the lab test...  As your husband had a pain free response, I'm confident his 25(OH)D serum concentration was around 80 ng/mL when he stopped taking this regimen...  This is the average response to a sustained dose of 10,000 IU/day vitamin D3... following the loading schedule.

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 #2038 - Sep 16th, 2014 at 11:48pm
 
Just after some advice from anybody who would like to chime in.

I am nearly at the end of week 3 of the loading dose with all the required co-factors recommended by Batch (thank you again).

Unfortunately I went back into cycle (my fourth) about a week ago culminating in getting my head knocked off 3 times last night. I forgot how a seriously screwed up an experience it is to wake up into such pain!
I've never had multiple hits at night before so I guess my cycle is escalating this time. Lucky me.
I went back on my prednisone taper and verapamil yesterday so I'll guess I'll get some relief from that soon. I have maxalt and Red Bull as abortives which have both been effective so far.
It's interesting that I've gone back into cycle now as normally December (last 3 cycles)is my time (heat). I do know there is no such thing as normal when talking clusters so a change of cycle should be no great surprise.
I also thought I would be getting some impact from the regime although I do acknowledge that it is still early days. I must be one of those that takes a bit longer to respond.
I won't be doing my 1 month blood test till the end of next week so I don't know where my levels are but I did start from a pretty low base (21.6ng/ml)
Can I accelerate the loading dose more at this stage or should I wait for the new test results.
The meds should get me out of pain soon but I would prefer the D3 to be my long term and permanent response. I'm not anti meds but they and the Red Bull together are quite expensive in the long term so it is also a financial choice

I know that many of you are also in pain or have busy lives so I appreciate any responses.
Alan

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Re: 123 Days PF And I Think I know Why
Reply #2039 - Sep 17th, 2014 at 6:46am
 
shortstraw wrote on Sep 16th, 2014 at 11:48pm:
I am nearly at the end of week 3 of the loading dose with all the required co-factors

Unfortunately I went back into cycle (my fourth) about a week ago 3 times last night.

Alan




Hi Alan

Don't get discouraged, it took me over 6 month to get my head some what under control!

and (at the moment) my doc's say I do not qualify as  ICCH, and are more then happy with the situation!

In essence, it might take some time to get were we would like to be, and the way might be stony -
but being over 95% pain free is a gift I have at times
stopded to believe I will ever get

And with such a simple method, with very small risks, if at all!

Michael
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Re: 123 Days PF And I Think I know Why
Reply #2040 - Sep 18th, 2014 at 2:49am
 
Thanks Michael

I think I was in one of those black holes you sometimes fall into. Had been flattened by the night before, and as has happened to me many times before, the CH's triggered a day long pounding tension headache which took away the last of my reserves and you just want a quick fix.
Today I'm more patient, the sun is brighter and things have settled. The headache is gone and the prednisone is doing it's job (no hit last night), just a few icepicks. Now to get back to tinkering with the regime !
Thanks to MikeNZ for his constant support and propping up and of course to Batch for answering my seemingly endless questions, regardless of how stupid some of them may be.

And thank you to this site for being a place where you can have a rant and vent … and everybody gets it.

Alan
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Re: 123 Days PF And I Think I know Why
Reply #2041 - Sep 19th, 2014 at 1:48am
 
I second that, keep at it alan !

question,  for those taking the regime, and pain free
  how many or who are also taking other preventatives ie
verapamil ????
I know there are a lot that the regime is working 100 % on its own, but for those that it has only dramatically reduced its effects, is verapamil or similar making you completely pain free   ?  very interested in everyones comments.
I'll quantify my question.
Ive been on the regime for about a year and a few months.
pryor to that, verapamil only, verapamil helped when I went into my next cycle, it took the extreme edge off the attacks, instead of kip 10, that cycle was kip7 average, quite noticeable.   while being on the regime and verapamil, only 240mg, any more and I fall over, January this year, heavy shadows came calling,, I was 200 nmol, I titrated up for about 2 weeks, the shadows disappeared and i didn't go into cycle, i gat tested and i was at 235 nmol.    I went off verapamil in early may, which knocked me about, in july shadows came, titrated up for two weeks again, but the cycle came !  average kip 5 for three weeks.
after tinkering with magnesium levels, calcium, fish oil, the cycle stayed.  perhaps, the combination of the regime and the relatively low dose of 240 verapamil is where i have to be ?  wont know now till nov-jan when a cycle normally rears its head. If it does, i was planning on making sure my d3 level was at 230 nmol, using prednisone on a tapered course and getting the verapamil into my system to see if the combination was indeed what killed this Januaries cycle on its arse !  verapamil on its own, just takes the edge off, but both may be my answer.
so interested to hear from others that are pain free on the regime, plus a preventative, that maybe didn't work for them until they added the vit d3 regime ????????
cheers
col
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Re: 123 Days PF And I Think I know Why
Reply #2042 - Sep 19th, 2014 at 3:53pm
 
A little update about the heart pounding sensation symptom that my husband experienced:
feisty wrote on Sep 8th, 2014 at 9:31pm:
The pounding was ongoing yesterday. We decided to discontinue the Regimen as of today to see if that stops the heart symptoms. If the pounding continues we will know that it's not related to the Regimen at least.

Eleven days later, we have concluded that the heart pounding sensations were related to the Regimen. He had been getting multiple episodes for 30+ minutes at a time. Immediately after discontinuing the Regimen, the episodes reduced a lot in frequency and duration - usually just none or once per day, usually just for a few minutes. They still continue and they still are bothering him, but it's far less than before.

I wish he would see a doctor but he insists that he can't due to ongoing work crises.

He is interested in re-starting the Regimen in components, but we're thinking that we should wait until the pounding stops completely (assuming it will).

Interesting anecdotes about discontinuing the Regimen - husband quickly got a cold, and he has not been sleeping as well as he was while taking the Regimen.

Good luck to those of you who are on the Regimen! Many issues with it can be worked through and Batch has been very generous with his advice.
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« Last Edit: Sep 19th, 2014 at 3:57pm by feisty »  

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Re: 123 Days PF And I Think I know Why
Reply #2043 - Sep 29th, 2014 at 10:36pm
 
feisty wrote on Sep 19th, 2014 at 3:53pm:
A little update about the heart pounding sensation symptom that my husband experienced:
feisty wrote on Sep 8th, 2014 at 9:31pm:
The pounding was ongoing yesterday. We decided to discontinue the Regimen as of today to see if that stops the heart symptoms. If the pounding continues we will know that it's not related to the Regimen at least.

Eleven days later, we have concluded that the heart pounding sensations were related to the Regimen. He had been getting multiple episodes for 30+ minutes at a time. Immediately after discontinuing the Regimen, the episodes reduced a lot in frequency and duration - usually just none or once per day, usually just for a few minutes. They still continue and they still are bothering him, but it's far less than before.
Another update.

It's now looking like the heart symptoms are NOT related to the Regimen. It's been 19 days since my husband discontinued the entire Regimen, and he is still getting irregular and pounding heart sensations. He was concerned enough to see a general practitioner doctor today about it. Doc said it was unrelated to the regimen and has ordered various tests including ECG and 24 hr Holter.

I'm glad to know that it is not related to the Regimen. Husband is planning to resume it once the dust settles following testing.

Best to all of you.
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Re: 123 Days PF And I Think I know Why
Reply #2044 - Sep 30th, 2014 at 12:16am
 
Feisty,

Thanks for the latest update.  Glad to hear your husband is seeing a cardiologist and that the anti-inflammatory regimen is NOT responsible for the heart pounding.

Please keep us posted.

V/R, Batch
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« Last Edit: Sep 30th, 2014 at 12:16am by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #2045 - Sep 30th, 2014 at 1:27am
 
Good move in getting it fully checked out. Hope all goes well with this.
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Re: 123 Days PF And I Think I know Why
Reply #2046 - Oct 1st, 2014 at 5:50pm
 
Batch wrote on Sep 30th, 2014 at 12:16am:
Feisty,

Thanks for the latest update.  Glad to hear your husband is seeing a cardiologist and that the anti-inflammatory regimen is NOT responsible for the heart pounding.

Please keep us posted.

My husband was diagnosed with atrial fibrillation last night in the ER. The cardiologist there confirmed that the supplementation was not causing his heart symptoms. Lesson learned: get heart symptoms checked out by a doctor ASAP.

I'll be starting a thread in the Cluster Headache Specific subforum of this forum because I am suspicious of links between my husband's newly discovered arrhythmia and the bad CH cycle he had this summer.

I only have reason to believe that the Regimen has helped my husband, not caused any side effects.
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« Last Edit: Oct 1st, 2014 at 5:50pm 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 #2047 - Oct 2nd, 2014 at 2:22am
 
Hi feisty,
            at least they have identified an issue, that's good.
  I haven't searched back thru threads, but didn't you mention that your husband already had a specific issue with his heart ?  I seem to remember something about that.
  whether ch can be pin pointed as a cause or whether it just aggrevated  a pre existing worstening condition, I don't know, but at least now the doctors can treat this issue and any meds for ch can be cross checked with the cardiologist, then he can move forward with controlling his clusters.  Im not sure whether or not you said he was on a channel blocker, verapamil for a preventative or not, but from my knowledge of such an issue, it can mean a complete change in diet, meaning cutting out caffeine, etc etc, or the need for a pace maker, or indeed as a friend had happen to him, finding out it was directly related to an over active thyroid. 
Best way of looking at it, is that they've now diagnosed his problem, and will obviously take the appropriate measures to fix his issue, so that's got to be of some relief to finally have an answer.
good luck with everything there, can only improve from here on in.
colin
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Re: 123 Days PF And I Think I know Why
Reply #2048 - Oct 2nd, 2014 at 12:59pm
 
Thanks Colin. Yes, there seem to be many causes. My husband had no known heart issues before this, and had not taken any medication for years before, only the Regimen.
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Re: 123 Days PF And I Think I know Why
Reply #2049 - Oct 2nd, 2014 at 1:03pm
 
I did find this article though - those whose vit D blood levels are over 100 ng/ml and who are having heart symptoms should be wary:

Quote:
The investigators found in an observational study of 132,000 subjects at Intermountain Medical Center that patients with 25(OH)D serum levels greater than 100 ng/ml were at a 2.5 times greater risk of developing atrial fibrillation. They found no increased risk of developing atrial fibrillation in levels of 0-20 ng/ml, 21-40 ng/ml, 61-80 ng/ml or 81-100 ng/ml. They did find an increased risk of hypertension, heart failure, diabetes, and renal failure for those who were deficient (0-20 ng/ml).


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Of course, I always wonder whether studies like that are done with people who are taking high doses of Vit D without the cofactors. From my reading the cofactors play an essential role in protecting against toxicity.

I find it very important that people take the time to understand the Regimen and read all the background material that Batch provides us with.
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