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123 Days PF And I Think I know Why (Read 444498 times)

thierry CH.com Alumnus Offline I Love CH.com! Posts: 406 Galway, Ireland Gender:	Re: 123 Days PF And I Think I know Why Reply #2550 - Mar 24^th, 2018 at 5:33pm sorry joseph, i meant 50000iu d3/day for a week to 10 days
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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: 123 Days PF And I Think I know Why Reply #2551 - Mar 24^th, 2018 at 7:37pm Joseph, What Thierry said about the loading dose for D3 and the Magnesium. Magnesium is an important element of the regimen. Peter.
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Joseph BIG

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Re: 123 Days PF And I Think I know Why
Reply #2552 - Mar 25^th, 2018 at 3:39pm

Mike, Thierry, Peter.

Thank you very much for your response.

My blood test arrived with Vitamin D3 of 50.

I will follow what you all suggested and also the article as Mike mentioned.

Why I lowered the d3?
Well....just saying to myself...Hey...I am years pain free...I do not want to give my body extra d3....Stupid ha?!

About the magnesium...I bought it yesterday. I took one with the meal and one before sleep.

Today...throughout all the day i felt like sleepy....Shall I take only one pill?

Again, thank you all guys for help and support.
Peace out and calm.

Joseph

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: 123 Days PF And I Think I know Why Reply #2553 - Mar 25^th, 2018 at 5:16pm Joseph, You need to stay at about 80 ng/ml to hope to stay pain free. Also, Magnesium won’t make you sleepy. At worst, too much might keep you visiting the bathroom with increased urgency and frequency. 400mg per day is sufficient. Best, Peter.
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Joseph BIG

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Re: 123 Days PF And I Think I know Why
Reply #2554 - Mar 26^th, 2018 at 7:27am

Thank you Peter.

By the way, just curious about oxygen...

Why does oxygen help...why specifically on high flow rate.... What happens in our body when we are inhaling 100% oxygen while having the beast attack.... Why it does help and reliev the pain of Cluster Headache...I am very curious to understand.

Joseph.

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Peter510

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Re: 123 Days PF And I Think I know Why
Reply #2555 - Mar 26^th, 2018 at 11:38am

Joseph,

An excellent question.

The theory is that vascular dilation causes pressure on the Trigeminal nerve, causing severe pain along the nerve path.

The cause of the vascular dilation is thought to be based in the Hypothalmus, but it is not known how or why this happens.

One of the known causes of vascular dilation is the need for increased oxygen, for example, when we exercise. Conversely, a high oxygen intake causes vascular constriction.

During a Cluster attack, the vascular constriction caused by the high intake of Oxygen, relieves the pressure on the Trigeminal nerve and the pain subsides.

The image below should make this more clear.

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Hope this makes sense. Maybe someone else could explain it better.

Peter.

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Re: 123 Days PF And I Think I know Why
Reply #2556 - Mar 26^th, 2018 at 2:22pm

Hi Peter.

Thank you for you reply.

Sounds very reasonable. So...what the vitamin d3 comes for...and all the regimen?

It sounds like that every episodic CH person should be chronic!

Why vascular dilation that wake up the beast (touching the nerves) happens ONLY in couple of years for episodic persons?

Isn't related to any kind of inflammation?

Isn't true to say that all the people in the world...that have brain

...when the brain feels that not enough oxygen arrives...shall cause to vascular dilation and hit the nerves and wake up the beast?!

Sorry for all these questions...I believe we can give reasonable understanding to all of us

Let me know if you can help answering some of the questions.

Again...Thank you Peter.
Joseph.

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Mike NZ

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Re: 123 Days PF And I Think I know Why
Reply #2557 - Mar 27^th, 2018 at 12:01am

Trying to answer some of your questions...

Q. So...what the vitamin d3 comes for...and all the regimen
A. Have a read through the document that Batch wrote that covers everything about D3 and CH - Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Q. It sounds like that every episodic CH person should be chronic!
A. If we could answer this question, it'd probably help make most people who are chronic be episodic and it may well help episodic people become CH free. We just need some researcher to find the right answer(s) to this one.

Q. Why vascular dilation that wake up the beast (touching the nerves) happens ONLY in couple of years for episodic persons?
A. See the previous answer, as we don't yet know exactly what triggers the start and end of a cycle.

Q. Isn't related to any kind of inflammation?
A. Possibly. Anti-inflammatory medication can help control / stop CHs and whilst it is probably than an inflammatory process kicks off CH, it may not be and there is always the possibility that there may be multiple paths to kicking off a CH / CH cycle. Again more research is needed.

Q. Isn't true to say that all the people in the world...that have brain Smiley...when the brain feels that not enough oxygen arrives...shall cause to vascular dilation and hit the nerves and wake up the beast?!
A. This may possibly be part of the trigger process, but most people don't get a CH when they get less oxygen, so again, more research is needed.

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: 123 Days PF And I Think I know Why Reply #2558 - Mar 27^th, 2018 at 5:38am Joseph, As I said in my last post, this is theory and the “how and why” is unknown. Hopefully, some day, someone will come up with the answers, but until then, we just have to fight the beast as best we can. Peter.
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Joseph BIG CH.com Newbie Offline I Love CH.com! Posts: 21 Gender:	Re: 123 Days PF And I Think I know Why Reply #2559 - Mar 28^th, 2018 at 5:34am Mike and Peter. Thank you for your reply. Joseph.
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scythrops

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Re: 123 Days PF And I Think I know Why
Reply #2560 - Mar 28^th, 2018 at 8:36pm

I'm an episodic and typically suffer for an 8 week period, usually annually, but I occasionally skip a year. Since moving to Australia 10 years ago, it has been Sep-Oct (used to be Jun-Jul in the UK). I skipped 2 years in a row for the first time ever last year and (falsely) hoped that they'd gone for good...

Anyway, they decided that 2.5 years without was too kind and reared their head in early March. As I do every time I start a cycle, I came on here to look for any developments. This is the first time that I discovered this D3 therapy. It sounded promising so I thought I'd give it a go. However, I was already 2 weeks into cycle and on the back foot, so wasn't well prepared or organised. I haven't been to see my GP or get my 25(OH)D serum levels tested.

I went to the pharmacy and cobbled together what I thought I needed to match the recommended Anti-inflammatory Regimen and was taking this for 10 days at the 50000 IU daily intake. Although I think (hard to properly judge) the severity of my headaches was lower than expected, the frequency seemed fairly typical and had then reached 1 or 2 a day. So I read up some more and discovered that I was missing a couple of the co-factors and potentially most importantly Diphenhydramine hydrochloride, which I'd seen reference to on a UK OUCH post having resulted in effective treatment via the Anti-inflammatory Regimen after two previous failed attempts, once Diphenhydramine hydrochloride had been included.

I suffer from hayfever and regularly take fexofenadine hydrochloride for it, which is a second-generation antihistamine. So I went back to the pharmacy and picked up the two co-factors I was missing (vitamin A and boron), plus a 10 pk of Unisom Sleep Gells (50 mg Diphenhydramine hydrochloride taken before bed).

Now, it's only been two days since I "corrected" my Anti-inflammatory Regimen intake, but I've been pain-free so far! I can still feel it lurking behind my right eye, but it's yet to develop into a headache. I'm about to step down to the 10000 IU maintenance dose of vitD, so I'll see how things go.

Just thought I'd share this with people and I'll post back later once more time has elapsed.

Cheers,
Dan.

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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3706 Bremerton, WA Gender:	Re: 123 Days PF And I Think I know Why Reply #2561 - Mar 29^th, 2018 at 12:34am Hey Dan, G'Day Mate... Thanks for the feedback on your experience with the anti-inflammatory regimen. A lot of CHers provided the key feeback that has made this regimen as effective as it is... It's comments like yours that help make it even better... Good Onya... Take care, V/R, Batch
Back to top	« Last Edit: Mar 29^th, 2018 at 12:35am 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 IP Logged

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Re: 123 Days PF And I Think I know Why
Reply #2562 - Mar 29^th, 2018 at 12:42am

Hey Dan,

Don't be afraid to jump back on the 50,000 IU/day loading dose for a few more days if the CH beast starts jumping ugly after your drop back to 10,000 IU/day as an initial maintenance dose...

I'm a chronic CHer and need 25,000 to 30,000 IU/day vitamin D3 in order to stay CH pain free during the high pollen season that just started a couple weeks ago... It's likely jacked my serum 25(OH)D over 150 ng/mL (375 nmol/L) but as long as my serum calcium remains within its normal reference range... no harm... no worry...

Take care,
V/R, Batch

« Last Edit: Mar 29^th, 2018 at 12:43am 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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Mike NZ

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Re: 123 Days PF And I Think I know Why
Reply #2563 - Mar 29^th, 2018 at 3:16am

G'day from over the ditch

Great to see that you're getting real benefits from D3 which has been something life changing for so many here.

It's also interesting to see how going down under has changed your episodic behaviour. When I was imported to NZ (by my kiwi better half), I had the exact same change with my hay fever, it vanished for a couple of years before starting up again to match the kiwi seasons.

It makes you wonder about the connections between the timing of episodic CH cycles and things like hay fever. I've also found that being on the D3 (plus co-factors), my hay fever too has been a shadow of its former self.

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thierry CH.com Alumnus Offline I Love CH.com! Posts: 406 Galway, Ireland Gender:	Re: 123 Days PF And I Think I know Why Reply #2564 - Apr 1^st, 2018 at 6:18pm Hey Dan, great to hear the positive outcome of Batch's D3 regimen on you too. Many of us are now pain free thanks to Batch's relentless work and research. I'm 5 years now benefiting from the D3 regimen :) A great club to be in.
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Re: 123 Days PF And I Think I know Why
Reply #2565 - Apr 7^th, 2018 at 8:08am

Hi Batch....an update.

As I mentioned, I am an episodic CH. It used to visit me every 2 years. Since I took the vitamin D3 I was pain free 6 years.

I lowered the vitamin D3, please don't ask me why, Undecided

Undecided

and I am now in the cycle for the past month.

My blood test arrived with Vitamin d3 of 50.

I already took 50,000iu for the last week and now continue with 40,000iu for the next week.

I also take Omega 3, magnesium, calcuim with boron and k2 ( complex calcium).

All is taken in the morning.

So far no relief Embarrassed

Embarrassed

I usually get 7-8 attacks a day where 2 of them are "crazy" ones I guess kip 8-9, while sleeping = one after 1 hour of sleep and the second after 6 hours of sleep. Both ugliest attacks are treated by taking 50m"g of Sumstridex pill at night and o2. All others are minors and treated by o2 during the day.

I just wanted to update and would love to hear if someone has any comments.

Thank you all.
Joseph.

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #2566 - Apr 7^th, 2018 at 11:51am

Hey Joseph,

Been there... Done it... Wished I hadn't... so know what you're going through.

You may have an absorption problem so pop 20,000 IU worth of vitamin D3 softgels between your back teeth and swirl the contents under your tongue for at least 10 minutes without swallowing. This sublingual application bypasses the GI tract and sends the vitamin D3 directly into the bloodstream through the mucus membranes under the tongue. When you feel the next CH attack coming, drink a glass of ice water with lots of ice through a straw then pop another 20,000 IU of vitamin D3 and swirl under the tongue... Double the Omega-3 fish oil dose as well.

Are you taking the Kirkland 50+ Mature Multi? If not, pick some up. You may need a two to three week course of vitamin B 100 complex if you haven't been taking the Mature Multi to get your B vitamins back up to snuff.

The next step is week to 10 day course of Benadryl (Diphenhydramine HCL) at 25 mg every four hours throughout the day. At the same time start Vitamin C at 1000 mg every two hours throughout the day. If there's no joy after 4 days of Benadryl, discontinue as an allergy is not likely. Continue the Vitamin C. I take 10 grams a day anyway...

Be careful and not drive while taking this much Benadryl as it will make you drowsy. If you need to drive during the day, wait until you're home for the day then take 50 mg as you walk through the door and another 50 mg at bedtime.

Starting a probiotic to get the friendly colonies of bacteria and biota in the GI tract called the microbiome happy is always a good idea as is drinking 2.5 liters of water a day.

A baking soda tonic might help. You make it with a half teaspoon of good old Arm & Hammer Baking Soda in 4 ounces of water. Two or three of these a day an hour after eating can help. The directions are on the box.

Finally there's diet. Avoid all sugars, fruit juice and soda pop. Avoid all grain and wheat products including corn and canola oil, bread, pasta and pizza. Good oils include organic butter, olive oil, avocado oil and my favorite, extra virgin coconut oil.

You can eat all the free range organic meats, poultry and eggs you want. A serving or two of wild caught fish (Sockeye Salmon, Sea Bass, Halibut, clams and muscles) is also good. Avoid farmed fish and all shrimp & prawns... They're loaded with antibiotics and likely glyphosate (Roundup) from grain based feed. You can also eat organic NON GMO green and yellow veggies. For fruit, an apple or orange a day is fine...

The above is a shotgun approach so should help send the CH beast running...

Take care and please keep me posted.

V/R, Batch

« Last Edit: Apr 7^th, 2018 at 11:56am 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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John2

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Re: 123 Days PF And I Think I know Why
Reply #2567 - Apr 8^th, 2018 at 3:14am

Intresting case on absorption for me. I have been on the regimen since the beginning of it, take 10000IU per day and always test around 190nmol. Recently got Celiac's disease, confirmed by antibody test (IgA? was high) and D3 level dropped to 138nmol and attacks came back. Maybe Celiac's or even low-level digestive or immune disorders (undiagnosed and not detectable?) are stopping absorbing the D3?
Stopped all that stuff, gluten, wheat, took D3 20000IU a day and it is holding off, just... There's a lot of brown leaves around, yellow pollen and we just had equinox, so... Sad

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Peter510

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Re: 123 Days PF And I Think I know Why
Reply #2568 - Apr 8^th, 2018 at 12:34pm

Hi there Johnno,

If you have malabsorption issues (my wife has and I know the problems it causes) and Celiac disease, it might be an idea to take your D3 melted under the tongue, as this allows for absorption straight into the blood stream.

I keep my levels at 200nmol, but recently I suffered from Sciatica, which was caused by inflammation in the spine and sciatic nerve, and my D3 levels dropped below 150......wham!!! It took about a week, but I got hit hard.

Try the “melt in the mouth” method for a week and see how that goes.

Best,

Peter.

« Last Edit: Apr 8^th, 2018 at 12:34pm by Peter510 »

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Re: 123 Days PF And I Think I know Why
Reply #2569 - Apr 8^th, 2018 at 12:47pm

Hi Batch.

Thank you for your quick response.

I reside in Israel and I got the regimen mainly from Solgar.

I use the followings:

1) Vitamin D3 DROPS. Each drop is 1000IU.

2) Magnesium with vitamin B2 link = Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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3) Omega 3 soft gels

4) Solgar Advanced Calcium link = Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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5) And the last one that I started 3 days ago is Solgar Male Multiple (like Kirkland 50+ Mature Multi) link = Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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All are taken in the morning according to the regimen. Shall i take all/some with the biggest meal of the day?

I believe (and hope) that all are correct according to the regimen. If you have any comment about my regimen I would love to hear.

I doubled the omega 3 and magnesium and... 4 days left to finalize the "2 week" method of 50,000 and 40,000 vitamin d3....Hope i will feel better Cry

Cry

The only difference is the Solgar Male Multiple that I started 3 days ago.

Joseph.

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #2570 - Apr 8^th, 2018 at 2:20pm

Joseph,

The Solgar supplements look fine. Have you tried the vitamin D3 drops sublingual? Starting a week to 10 day course of a first-generation antihistamine is a good idea if the CH beast is still jumping ugly... There are several antihistamines in this category so you may need to see your local chemist/pharmacist. I'd also start the vitamin C at 10 grams a day.

Take care and please keep us posted.

V/R, Batch

« Last Edit: Apr 12^th, 2018 at 6:26pm 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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Joseph BIG CH.com Newbie Offline I Love CH.com! Posts: 21 Gender:	Re: 123 Days PF And I Think I know Why Reply #2571 - Apr 9^th, 2018 at 6:06am Hi Batch. Thank you very much. I will keep you posted. By the way, if i put the current vitamin d3 drops I have, under the tongue...will it help? Joseph.
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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3706 Bremerton, WA Gender:	Re: 123 Days PF And I Think I know Why Reply #2572 - Apr 9^th, 2018 at 11:46pm Joseph, Sublingual (under the tongue) is the fastest way of getting vitamin D3 into the bloodstream... Do it! V/R, Batch
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Joseph BIG CH.com Newbie Offline I Love CH.com! Posts: 21 Gender:	Re: 123 Days PF And I Think I know Why Reply #2573 - Apr 12^th, 2018 at 2:52pm Hi Batch. I went to my physician today to ask for the Benadryl (Diphenhydramine HCL). I am attaching an image of what I got. "Benadryl" as trade market name is not available in my country. Is it OK? Joseph
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #2574 - Apr 12^th, 2018 at 6:20pm

Joseph,

Spot on... You're good to go with the Broncho-D. Diphenhydramine HCL is exactly what you need if an allergic reaction is problematic. Be sure to add the 8 to 10 grams/day vitamin C.

You're correct. The brand name Benadryl is formulated differently in different countries. That's why I add the phamaceutical name, (Diphenhydramine HCL). In your case the Broncho-D is formulated with Diphenhydramine HCL and a salt (ammonium chloride), but that shouldn't make any difference.

Take care and please keep us posted.

V/R, Batch

« Last Edit: Apr 12^th, 2018 at 6:34pm 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

pete_batcheller

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