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walking a fine line (Read 26357 times)
feisty
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Re: walking a fine line
Reply #75 - Aug 5th, 2014 at 6:27pm
 
Maz...that is great!  Smiley

Dh can't go on the camping trip even if he recovers from CH. Too much pressure at his job Sad . I think we may go anyway. I'm not too excited about it though - it doesn't really feel like a holiday going camping as the sole adult...so much work  Undecided .
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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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feisty
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Re: walking a fine line
Reply #76 - Aug 6th, 2014 at 12:17pm
 
Dh got hammered badly with an attack in his sleep last night. Sounded like he was having a lot of trouble aborting with the O2.
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« Last Edit: Aug 6th, 2014 at 12:17pm by feisty »  

Smiley wife of 48 year old husband who suffers from episodic CH ~ Batch's Anti-Inflammatory Regimen works!
 
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QnHeartMM
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Re: walking a fine line
Reply #77 - Aug 6th, 2014 at 1:02pm
 
I haven't been on in awhile but I hope you have read the thread about the success of using D3. My DH hasn't had a CH in over 4 years, since starting the D3 regimen.
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feisty
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Re: walking a fine line
Reply #78 - Aug 6th, 2014 at 7:32pm
 
QnHeartMM, thanks for the advice. That is fantastic that D3 has been working for your husband!

Dh has been on the D3 regimen for 16 days but so far it's not working. There were a couple of easier nights recently, but last night's middle of the night attack was a doozie.
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« Last Edit: Aug 6th, 2014 at 11:35pm by feisty »  

Smiley wife of 48 year old husband who suffers from episodic CH ~ Batch's Anti-Inflammatory Regimen works!
 
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feisty
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Re: walking a fine line
Reply #79 - Aug 7th, 2014 at 5:54pm
 
Dh is on Day 17 of regimen. There may be some reason for slight optimism. For weeks, it was 2-3 attacks per night. The past four nights there has only been one attack per night - mild if dh is awake and can abort with O2 quickly, bad if it ramps up while dh is sleeping then he wakes in raging pain.

Dh is on Day 45 of cycle. In the previous 5 years, the cycle happened in October and lasted 3-4 weeks so this cycle is atypical for dh.
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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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feisty
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Re: walking a fine line
Reply #80 - Aug 13th, 2014 at 7:49pm
 
Cycle has been going on since Jun 24 now. It's now been 10 days that dh has "only" gotten one attack per day, except 3 nights ago he had a pain-free day/night. Still wondering if the D3 is starting to work (end of 4 week period is in 4 days) or if this stupid cycle is starting to wind down. When dh had his pain-free day he was SO happy, but it was short-lived.

I did go camping for 3 days with the kids, without dh. It was worthwhile, and fun. But a bummer leaving him behind. He was a good sport about it.
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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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maz
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Re: walking a fine line
Reply #81 - Aug 14th, 2014 at 5:17pm
 
So glad you had fun camping with the kids. In a way you all suffer from your husbands CH and I'm sure the break did you good. ( Got any pics ?) It's important to look after yourself too.
Hope he was OK while you were gone.
Maz.
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feisty
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Re: walking a fine line
Reply #82 - Aug 14th, 2014 at 6:29pm
 
Didn't take too many pics - too busy supervising kids and doing camp chores Wink . It was a nice change of scene for me though.

Dh was fine without me. Probably better actually Wink
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feisty
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Re: walking a fine line
Reply #83 - Aug 15th, 2014 at 1:00pm
 
On Batch's advice, dh took an extra loading dose of 50,000 IU last night. He continues to have one milder headache per night - usually waking him up but sometimes hitting before bed. I think he is feeling a bit better than when he was getting the more powerful 2-3 attacks per night. But what really shows the toll was the night when he didn't get an attack at all (5 nights ago). He said he woke up and felt well rested and SO GOOD that he couldn't believe it.

I'm very curious to see what his D3 test will show - he'll take it in two days then we have to wait for the results.
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feisty
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Re: walking a fine line
Reply #84 - Aug 16th, 2014 at 5:41pm
 
No CH last night for dh!

Too early to do my happy dance but I am hoping the episode is over!

I'm wondering if the D3 regime is working here, or cycle finishing. We'll continue with the regime either way - for health reasons.
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feisty
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Re: walking a fine line
Reply #85 - Aug 17th, 2014 at 3:37pm
 
Dh has been pain free for the past two nights Smiley

I posted this in another thread:

feisty wrote on Aug 17th, 2014 at 3:34pm:
Well, here's an update of my dh's results so far. His cycle started June 24, approx 8 weeks ago. He's never had a cycle in the summer (usually October), that has lasted this long (usually 3-4 weeks), or been this bad (2-3 attacks per night much of the cycle, some very long attacks).

Dh started Batch's Anti-Inflammatory Regimen 28 days ago (except it has been lacking boron, which was not available locally or included in the multi I purchased. dh was taking honey as a source of boron but he will start a boron supplement as soon at it arrives). Based on Batch's advice, dh did an accelerated loading schedule in the first two weeks. He has taken a total of 580,000 IU of D3 within the 28 days.

When he started the Regimen, dh was getting 2-3 attacks per night and they were pretty brutal. After 14 days of the Regimen, dh's attacks dropped down to one per night. On day 21, he had a single pain-free night. Then within the last week, the attacks have been one per night, and milder, with pain-free nights on days 26 & 27 (last two nights Smiley ). At this point, it's possible that dh's cycle is ending naturally, but the pattern of CH intensity seems to correspond with the pattern of D3 loading.

It's day 28 so dh did the 25(OH)D blood test that we will mail into GrassrootsHealth. When we receive the results we will fill in Batch's survey.

I am really hoping that it's the Regimen that is contributing to the pain reduction so that we have a long-term prevention solution. Thank you Batch for the work that you have done on this.

There are so many reasons to take the Anti-Inflammatory Regimen other than CH, so I and my children (modified) are taking it as well.

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« Last Edit: Aug 17th, 2014 at 3:46pm by feisty »  

Smiley wife of 48 year old husband who suffers from episodic CH ~ Batch's Anti-Inflammatory Regimen works!
 
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feisty
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Re: walking a fine line
Reply #86 - Aug 18th, 2014 at 2:14pm
 
I really think the D3 is working - it's been 3 painfree nights in a row!
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Hoppy
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Re: walking a fine line
Reply #87 - Aug 18th, 2014 at 4:27pm
 
That's good to hear, fingers x it stays that way.
It didn't work for me during my Spring 2012
cycle, but I persisted, and stayed on the regime,
and haven't had another episode since.

Hoppy.
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feisty
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Re: walking a fine line
Reply #88 - Aug 18th, 2014 at 5:28pm
 
That's so fantastic Hoppy. This forum has helped so many to manage CH and become pain free  Smiley
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feisty
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Re: walking a fine line
Reply #89 - Aug 19th, 2014 at 10:35pm
 
Sigh. Don't count your chickens...dh was on the O2 in the middle of the night last night.
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feisty
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Re: walking a fine line
Reply #90 - Aug 20th, 2014 at 1:31pm
 
Well, a pain-free night for dh last night...which is GREAT because he was staying at a hotel with no O2. Four of the past 5 nights have been pain free. I really think it's the Regimen. Really curious to see dh's D3 levels - because I think we tested right at his threshold for becoming pain free. It would be cool to get a really good maintenance dose.
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feisty
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Re: walking a fine line
Reply #91 - Aug 21st, 2014 at 11:28pm
 
another mild CH last night.
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Mike NZ
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Re: walking a fine line
Reply #92 - Aug 22nd, 2014 at 2:00am
 
feisty wrote on Aug 21st, 2014 at 11:28pm:
another mild CH last night.



Pain free nights and single mild CHs are a big step forward from a few weeks back. Hope it keeps improving with more of the pain free nights.
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feisty
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Re: walking a fine line
Reply #93 - Aug 23rd, 2014 at 8:53pm
 
Yes, HUGE progress Mike Smiley .

Pain free nights the last two nights. I gave dh an extra loading dose of 50K D3 last night in case he just needs a dose upwards to nudge him out of CH zone.
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feisty
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Re: walking a fine line
Reply #94 - Aug 25th, 2014 at 3:06pm
 
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.

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feisty
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Re: walking a fine line
Reply #95 - Sep 3rd, 2014 at 4:29pm
 
My husband has been pain free for over two weeks now Smiley . But, I posted about a concerning symptom in the 123 thread:

feisty wrote on 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:
    Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
  • Articles about heart palpitations being triggered by D3 supplementation with inadequate magnesium:
    Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
    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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feisty
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Re: walking a fine line
Reply #96 - Sep 19th, 2014 at 3:44pm
 
from the 1,2,3 thread:
feisty wrote on 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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feisty
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Re: walking a fine line
Reply #97 - Sep 19th, 2014 at 3:56pm
 
also from the 1,2,3 thread:

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.

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.

So frustrating. We don't know what his D3 levels was or are (due to the lab screwup), we don't know if the Regimen worked (because it might have been the episode ending naturally), we don't know why the Regimen caused the heart pounding sensations, and we don't know whether the Regimen can be tweaked to prevent this. The pounding really bothers my husband - it wakes him up and stresses him out.
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« Last Edit: Sep 19th, 2014 at 3:58pm by feisty »  

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BarbaraD
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Re: walking a fine line
Reply #98 - Oct 4th, 2014 at 8:28am
 
Trust me.. Tell the stubborn fool to crank up the O2 and hyperventilate! (Mama has spoken!). It works better and quicker that way.

And pick up some Melatonin at the drug store or grocery store. Take about 10-20 mg before bedtime. It helps get thru the REM (Rapid Eye Movement) where the CH hits after about 90 minutes of going to sleep. Sometimes it takes a while to get in your system so keep taking it.. It's OTC and doesn't have any side effects.. But it will help him get the rest he needs to fight the other hits.

And about the Red Bull.. it's loaded with caffeine and taurine which seems to help stop the CH (if you chug it at the first sign of the CH). Coffee helps some also.

We've all been where he is and are trying to help him. If you can get him on this site and let him hear our "war" stories. Sometimes just knowing he's not the only one helps.

I've been hit on airplanes and in airports and about everywhere you can think of.

And I'm with everyone on the Imitrex. It's a med used for migraines (and works well on CH) and I can't for the life of me understand why your GP is hesitant to give you the injections. You might ask about cafergot (another med used for migraines and CH). It's a vaso-constrictor (comes in pill form). Bad part about it is that it makes you nauseated (or does me). I take Phenergan with it (Dramamine will work also).

Cafergot takes longer to work, but seems to me it lasts longer than Imitrex.

Keep him on the D3 (and the supplements). It's working for so many of us.

Keep us up to date and bring the big lug to this site and let me put my 5 1/2 shoe in his rear..  Smiley And bless you for helping him.  Kiss
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feisty
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Re: walking a fine line
Reply #99 - Oct 4th, 2014 at 5:06pm
 
Thanks BarbaraD. Fortunately husband is between cycles right now. Unfortunately, as soon as his cycle stopped, he started having atrial fibrillation. It was diagnosed a few nights ago in the ER. We are worried Sad .

I have to say, I am having a tough time being a supporter. I worry (too much?) about my husband and I am having trouble keeping on track with my own freelance work and homeschooling the kids. My life is complex at the best of time and it sucks dealing with the consequences of having let things slide due to the focus on husband's health over the past four months.
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