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CH sufferer in need of advice!!! New to forum (Read 8273 times)
feisty
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Re: CH sufferer in need of advice!!! New to forum
Reply #25 - Aug 14th, 2014 at 5:03pm
 
Yes, I'd kick the Dr Pepper before kicking the D3 regimen  Undecided . The caffeine and chemicals are unlikely to be helping anything.

But the thing is, it's tough when the supporter is doing all the research and pushing solutions onto a reluctant CH sufferer. My dh should probably be re-examining some lifestyle issues as well, but he is still so burned out with coping with the CH that he isn't really prepared to become more proactive at this point.

CH Wife, I think where we can help is focusing on supporting our sufferers with implementing specific treatment goals. That might mean taking things one thing at a time. In my case it was O2 first, then the D3 regimen, then getting dh to tweak his O2 technique, etc. Without high motivation, a sufferer may not be able to handle more than one goal at a time.
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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: CH sufferer in need of advice!!! New to forum
Reply #26 - Aug 14th, 2014 at 11:44pm
 
Fiesty and Blacklab:   I have all the cofactors for the vit d regimen and had him taking exactly what was posted until he complained of the heart palpitations. I'm thinking it could be the verapamil causing rhythm issues or just major anxiety. He took atenolol originally for tachycardia and pre hypertension and we switched to verapamil when I found that it's used for CH. However it doesn't work as well for his heart issues.
Got the O2 regulator today so will get it on O2 bottle and have on standby. (I was told by Dr that anything less than 10lpm with a non rebreather mask is not advisable because he could retain to much CO2 ) but we are set now. 
Dr pepper   He has lived on it his whole life.  His mom and brother do mt dew and cigs and he has his dr pepper and cigs. most of everything anymore unless organic is bad.when he is ready to quit then I will help but he isn't ready and I'm not about to push for it lol!
MRI tomorrow so gotta get him past that and neuro in a week. 
Thanks for all the advice will update again after neuro and I will definently watch video!
Lacie
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Mike NZ
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Oxygen rocks! D3 too!


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Re: CH sufferer in need of advice!!! New to forum
Reply #27 - Aug 15th, 2014 at 3:45am
 
CH Wife wrote on Aug 14th, 2014 at 11:44pm:
...he complained of the heart palpitations. I'm thinking it could be the verapamil causing rhythm issues


Verapamil can impact the PR interval, which is part of the ECG trace, which could be the issue.

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When taking verapamil it is advised to have ECGs done every few months. This might be worth following up.
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feisty
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Re: CH sufferer in need of advice!!! New to forum
Reply #28 - Aug 15th, 2014 at 11:49am
 
Also, I have experienced major heart pounding due to anxiety. It can actually be very unsettling. I don't have any heart problems that I know of. And I can certainly imagine anxiety coming along with CH! Sad

Glad you're getting it all checked out.
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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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Hoppy
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Re: CH sufferer in need of advice!!! New to forum
Reply #29 - Aug 15th, 2014 at 10:31pm
 
If your hubby is taking a calcium supplement noted in the
D3 regime you can discard it, or have at least a 7hr gap
before taking Verapamil.

Hoppy.
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Re: CH sufferer in need of advice!!! New to forum
Reply #30 - Aug 15th, 2014 at 10:56pm
 
Well his dr called about MRI and reported he has a normal brain in a normal skull lol! So I think that has eased his anxiety a some. Now it's neurologist on Thursday. The only calcium is in his multivitamin and that only has 210mg. But he takes verapamil 240mg twice daily so there really is no spacing the calcium so we stopped multivitamin for now. Again thanks for all input!
Lacie
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Re: CH sufferer in need of advice!!! New to forum
Reply #31 - Sep 10th, 2014 at 1:59pm
 
So it's been awhile but I have an update. My DH has had and MRI with negative results and now a CT angiogram and we are currently waiting on those results to rule out aneurysm.  The neurologist was ok but pretty cocky which my DH doesn't handle very well.  The dr is not all the way certain that my DH had ch but only due to the irregularity that the headaches strike. Which I don't really get because in my book they happen from  noon to 4am and they do wake him up but not all the time. it could be the middle of the day.  This dr seems to think we should be able to pin point a certain time and know when it's going to strike.   I just think with my husband and his job and stress he had different factors that affect his ch differently.  But the neuro does believe has a something related to the ch family of headaches.  that I have read through and we have weeded out several.  He wants us to try the oxygen and see if it helps and he said that will also help in his diagnosing my DH. DH is now on amitriptylline which according to the resident at our PCP is also used to help with CH. So far he hasn't had anymore ch since last time I posted but that's also because he has been on prednisone this entire time.  I have finally convinced him to wean off and he should be off in 2 days. So we shall see what happens.  We are starting the vit d regimen minus the vit k today. Neurologist said no to vitamin k2 but ok to everything else.  I mentioned the vit d research and he actually laughed at us and said that there was nothing to lead him to believe there was any standing in that data.  But he was ok with DH taking supplements(with a smirk) I think he thought I was gullible but then towards end of visit he realized I worked in the medical field he started acting better.  He wants to start my DH on tegretol(not a fan) after we see him again and CTA looks ok.  My fingers are crossed that I can make him eat crow on the vit d and we don't have to deal with crazy meds.

Thanks all for reading
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Mike NZ
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Re: CH sufferer in need of advice!!! New to forum
Reply #32 - Sep 10th, 2014 at 11:39pm
 
Sounds like the neuro has read the classical description of CH, i.e. exact times for CHs, but doesn't understand that there is a full spectrum of symptoms, frequencies, etc.

It also sounds like his attitude isn't what it should be. Good job you have lots of background info on CH from what you've picked up here, imagine what its like for those who don't have this?

Amitriptylline is the first preventive I was put on and I found it worked reasonably well with no real side effects that I noticed, although I switched to verapamil after about 4 months as I was looking for something which worked even more effectively, which it did for me.

If he isn't convinced by D3, then he might change his mind when he sees the evidence of it working. I know its helping me for sure as I'm approaching 1000 days CH pain free with it.
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