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Mike NZ

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Oxygen rocks! D3 too!

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Re: Hello from Denver, CO 12 yrs of Hell.
Reply #25 - May 23^rd, 2016 at 2:02am

Good news on a better day. It is very unlikely to be the verapamil since it normally takes 7 to 10 days for a verapamil dose to become effective plus 120mg is a very low dose with most people taking 360-480mg a day with some needing up to 1000mg a day.

So at the moment it is more likely to be the vitamin D3 which is doing it.

I'd be tempted to stick to just the D3 and to give that a go.

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Peter510

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Don't give out... But
don't give in.

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Wexford. Ireland
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Re: Hello from Denver, CO 12 yrs of Hell.
Reply #26 - May 23^rd, 2016 at 5:02am

Mish,

According to my Doc, D3 + cofactors and Verapamil is not a good idea, although, as Mike says, the dose you took is very low. Verapamil will also cause your blood pressure to drop, so be careful.

Another point to consider. If you take both, you will not be able to definitely say which is the cause of your improvement.

I agree with Mike. Give the D3 a chance.

Best,

Peter.

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Mish C.

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Re: Hello from Denver, CO 12 yrs of Hell.
Reply #27 - May 23^rd, 2016 at 9:40am

It seems that I spoke too soon. My 6am came right on schedule today and with a vengeance. After an hour and a half of pacing, head banging (yes, this does actually seem to bring me some relief even though I know it's not healthy) and sobbing like a baby, begging for the pain to stop, I'm now in the end stages. The pain was so horrible that I did something that I probably shouldn't have done, but I just couldn't stand it anymore. I took my 11th spray of Migranal in a week. Anything to escape that horror, right? The worst part is that I can still feel it lurking in the background, though not as badly as before. I will continue the d3 regimen and stop taking verapamil. The (almost) pain free day was amazing and I never get those during an active cycle so hopefully something is working. I dunno. I'm pretty depressed. This is wearing me down and I just don't know what to do anymore. I want so desperately for this to end. I would cut off a limb if I thought it would stop the pain.

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Batch

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Control The Beast With
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Re: Hello from Denver, CO 12 yrs of Hell.
Reply #28 - May 23^rd, 2016 at 12:52pm

Hey Mish,

Sorry you're having such a rough time. Approximately 5% of CHers who start the anti-inflammatory regimen experience and initial favorable response followed a few days later by some heavy CH hits.

I suspect this phenomenon is due to an imbalance in the availability of enzymes at the cellular level that are needed to hydroxylate vitamin D3... CHers are almost always vitamin D3 deficient before starting this regimen and a magnesium deficiency is also very common.

It appears the first few days of vitamin D3 deplete available magnesium and zinc at the cellular level that are needed to support the enzymatic processes that hydoxylate vitamin D3 and this results in a return of the CH beast.

Fortunately, these CH pass in a couple days if the CHer hangs tough and continues taking this regimen with all the cofactors. Going on the 2-Week vitamin D3 loading schedule appears to minimize and in some cases eliminate this problem.

Increasing the magesium may also help. Try taking one 400 mg magnesium gelcap in the morning with breakfast and a second with the evening meal for a few days. Splitting the magnesium dose like this will help reduce the incidence of osmotic diarrhea.

The 3-month course of vitamin B 50 is also important as B12 and Folic Acid are also consumed in vitamin D3 metabolism.

Take care, hang in there and please keep us posted.

V/R, Batch

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« Last Edit: May 23^rd, 2016 at 12:54pm 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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Potter Ex Member	Re: Hello from Denver, CO 12 yrs of Hell. Reply #29 - May 23^rd, 2016 at 12:59pm Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or There's a great support group in Denver. Check it out. Potter
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Mish C. CH.com Newbie Offline I Love CH.com! Posts: 18 Denver, CO Gender:	Re: Hello from Denver, CO 12 yrs of Hell. Reply #30 - May 23^rd, 2016 at 2:06pm I don't use facebook. I'm actually against it for personal reasons.
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Potter Ex Member	Re: Hello from Denver, CO 12 yrs of Hell. Reply #31 - May 23^rd, 2016 at 2:23pm Mish C. wrote on May 23^rd, 2016 at 2:06pm: I don't use facebook. I'm actually against it for personal reasons. Your loss. They meet once a month or so and just had Mitch Post speak about DALT. Potter
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Rumeke

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Re: Hello from Denver, CO 12 yrs of Hell.
Reply #32 - May 23^rd, 2016 at 9:42pm

Mish..I totally understand your frustration and getting depressed. I have been in cycle since last August and my hits have varied from 1 a day to every hour at night. I would not still be here if it wasn't for my O2. I use 15 LPM with the cluster O2 mask from this site. It will literally save your life. The hits may still come but with the pain only lasting a few minutes..life is livable. I think it's the pain we suffer that beats us down.

While you are waiting for the D3 regimen to work..push for the O2 and order the mask from here. Cry, demand..what ever it takes.

Do not give up..this too shall pass and know that we all here have been where you are now. If you need to vent..this is the place.

Take care and ignore Potter, he can be a bit testy at times.

Judy

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Potter

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Re: Hello from Denver, CO 12 yrs of Hell.
Reply #33 - May 23^rd, 2016 at 9:49pm

Rumeke wrote on May 23^rd, 2016 at 9:42pm:

Mish..I totally understand your frustration and getting depressed. I have been in cycle since last August and my hits have varied from 1 a day to every hour at night. I would not still be here if it wasn't for my O2. I use 15 LPM with the cluster O2 mask from this site. It will literally save your life. The hits may still come but with the pain only lasting a few minutes..life is livable. I think it's the pain we suffer that beats us down.

While you are waiting for the D3 regimen to work..push for the O2 and order the mask from here. Cry, demand..what ever it takes.

Do not give up..this too shall pass and know that we all here have been where you are now. If you need to vent..this is the place.

Take care and ignore Potter, he can be a bit testy at times.

Judy

And informed.

Potter

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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: Hello from Denver, CO 12 yrs of Hell. Reply #34 - May 24^th, 2016 at 12:07am And opinionated. Brian.
Back to top	My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com IP Logged

Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: Hello from Denver, CO 12 yrs of Hell. Reply #35 - May 24^th, 2016 at 3:07am Mish, Judy is right. It's time to start shouting, crying, screaming and generally pushing hard for your O2. Your Doctor should be treating your need as an urgent priority. The squeaky wheel gets the grease! Peter.
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Potter Ex Member	Re: Hello from Denver, CO 12 yrs of Hell. Reply #36 - May 25^th, 2016 at 10:03am AussieBrian wrote on May 24^th, 2016 at 12:07am: And opinionated. Brian. Must be hell havin Potter rent that little place in your head. Potter
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Mish C.

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Re: Hello from Denver, CO 12 yrs of Hell.
Reply #37 - May 26^th, 2016 at 9:49am

Big dick syndrome aside, can I please vent a little? Sorry. I just feel like there were a few posts in there that were unnecessary & did nothing to help anyone. We are supposed to be helping one another.

I had to cut my d3 regimen to half. For the last 2 days, I have been vomiting nonstop and the other end was not fortunate either. Both ends. Headaches throughout, but not anywhere near as severe as before. As stated before, I do seem to be very sensitive to certain meds. I'm a very small woman. 5'4" and maybe 120, liberally.

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Peter510

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Don't give out... But
don't give in.

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Wexford. Ireland
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Re: Hello from Denver, CO 12 yrs of Hell.
Reply #38 - May 26^th, 2016 at 11:07am

Mish,

Sorry hear you're having such a rough time. NEVER apologise for venting, it's not only allowed, it's encouraged.

I doubt if the D3 itself is the cause of vomiting and diahorrea, but it is possible that the Magnesium is.

Batch, I note that you suggested a few days ago that Mish increase her the dose of Magnesium. Am I way off base with that suggestion?

Mish, any word on your O2 ?

Mind yourself,

Peter.

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You don't stop laughing because you grow old....You grow old because you stop laughing.

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Mish C. CH.com Newbie Offline I Love CH.com! Posts: 18 Denver, CO Gender:	Re: Hello from Denver, CO 12 yrs of Hell. Reply #39 - May 26^th, 2016 at 12:24pm I left a message for my neuro. Waiting to hear back. No viable O2 as of yet. I've resorted to too many doses of my ergots. They work. If I get necrotic, so be it.
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Potter Ex Member	Re: Hello from Denver, CO 12 yrs of Hell. Reply #40 - May 26^th, 2016 at 12:28pm I can get more info about the Denver support group if you like. Potter
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Mish C. CH.com Newbie Offline I Love CH.com! Posts: 18 Denver, CO Gender:	Re: Hello from Denver, CO 12 yrs of Hell. Reply #41 - May 26^th, 2016 at 12:30pm I've lost everything. My dream job, my ability to function normally. I'm a veteran who saved many lives, yet I can't even sort my own head (pain) out. It makes me feel so weak.
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Mish C. CH.com Newbie Offline I Love CH.com! Posts: 18 Denver, CO Gender:	Re: Hello from Denver, CO 12 yrs of Hell. Reply #42 - May 26^th, 2016 at 12:32pm That would be ace, but I do not use facebook. As stated above, personal reasons. USAF loud & proud.
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Potter Ex Member	Re: Hello from Denver, CO 12 yrs of Hell. Reply #43 - May 26^th, 2016 at 12:58pm Welcome home grunt. Potter
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Mish C. CH.com Newbie Offline I Love CH.com! Posts: 18 Denver, CO Gender:	Re: Hello from Denver, CO 12 yrs of Hell. Reply #44 - May 26^th, 2016 at 1:04pm Tsgt here, so "grunt" is not something I've done in a long time, but thanks for the support.
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Potter Ex Member	Re: Hello from Denver, CO 12 yrs of Hell. Reply #45 - May 26^th, 2016 at 4:49pm Check your pm's. Potter
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RichardN

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Re: Hello from Denver, CO 12 yrs of Hell.
Reply #46 - May 27^th, 2016 at 7:25pm

Hi Mish

Congratulations on a bit of pain free time, and wishing you permanent PF time.

As Verapamil is a taper drug and usually doesn't provide that kind of relief until a minimum of 240mg, I'm thinking it probably didn't have anything to do with the single 120mg tab.

My first PF day (in over a year) occurred when I hit that number . . .got as high as 480, then tapered back to 360. I had 3 attacks that night, but had 02 to kill them quickly.

I've been gone for a while and the new breathing method is new to me . . . but that's what happens when you're 0ut-of-the-loop for a while.

I'm a head trauma CHer, hit my head 1/01, attacks started. When wife found this site, was having 6-8 attacks daily, 3-5 at night . . . a basket-case afraid of sleeping, eating, alone-time with young grandson and always that FEAR of the next one; When will it come?, How long will it last?, How bad will it be?

I'm back to tell you and others that I've been PF for 2 1/2 years using the D3 regimen (Thanks Batch)

I used to keep 20 "E" tanks of 02. Still keep a few in case I happen across a CHer who's unaware of how effective it can be if used properly.

Keep reading . . . keep asking . . . keep posting. You've found the motherlode of CH info/caring/sharing.

Be Safe,

PFDANs

Richard

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I can live with the beast as long as I don't have to "dance" with the bastard.

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