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123 Days PF And I Think I know Why (Read 446738 times)

Batch

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Re: 123 Days PF And I Think I know Why
Reply #875 - Jul 15^th, 2012 at 2:28am

Hey Billie,

Good move... An ounce of prevention by starting the anti-inflammatory regimen now could easily prevent your next and any following CH cycles as long as you stay on this regimen...

There are also at least 13 Level A RTCs focused on the benefits of vitamin D3 lowering the incidence of osteoporotic fractures and several surveys linking a vitamin D3 deficiency with a higher incidence of rheumatoid arthritis...

Getting the entire family on this regimen has the potential for a significantly improved quality of life.

Watch the following video of Dr. Robert Heaney for more details...

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Take care and please keep us posted.

V/R, 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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Evan O CH.com Junior Offline Posts: 27 Brooklyn, New York Gender:	Re: 123 Days PF And I Think I know Why Reply #876 - Jul 17^th, 2012 at 12:47am Batch, I asked my endocrinologist the same question and you win. I'll have to break open the piggy bank to see if I have enough for a RCT. Thanks again for your continued feedback on this. Evan
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Re: 123 Days PF And I Think I know Why
Reply #877 - Jul 17^th, 2012 at 7:40am

D3 Update (started 6/21 during a pred taper)
Off prednisone for ~4 days now

480mg verap
2,000 Omega
50k/iu loading dose, 25k/iu daily dose D3
400mg Mg/1000mg Calcium (combo pill)
.
Getting 1 to 2 headaches daily, and shadows in between, but the past 2 days I've only had 1 headache and minor shadows. The frequency and intenstity of headaches is far less than it was prior to D3.
.
I have to say the D3 is having some effect. I have to go the dr. to get my levels tested (this week) --.. more to come next week.

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Wayne

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Re: 123 Days PF And I Think I know Why
Reply #878 - Jul 18^th, 2012 at 2:59am

I saw this post a while ago and was referred to it again by MikeNZ. The results are very encouraging. I figured why not join in and, seeing as I appear to be in a high cycle, no time like the present. I kicked off yesterday. My daily regimen is as follows

07:00 160mg Verap, 400mg Lithium Carbonate, 5000iu D3, 670mg calcium citrate, 300mg Magnesium and a multi vitamin
13:00 160mg Verap, 5000iu D3
17:00 1mg Ergotomine
19:00 160mg Verap, 400mg Lithium Carbonate
22:00 Melatonin capsule

Also drinking a lot of lemon tea

Hopefully you guys will see a lot of stuff disapearing off that list over the next few months.

Day 1 - alittle wierd with constant light shadows but no major hit
Day 2 - All good so far.

PF Days to all

A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #879 - Jul 18^th, 2012 at 12:20pm

Hey Wayne,

Welcome to the club. Another Kiwi... What a hoot. I'm confident you'll find this regimen effective enough to come off all the other med's.

Joshua,

Four days... well five now off prednisone with no major increase in hits is a great sign. Normally they come back like the hammers of hell when CH'ers come off prednisone. I suspect you'll be enjoying more PF days and nights with this regimen. The results of your 25(OH)D labs are important as you appear to be going up past the tipping level concentration where you'll remain PF.

Evan,

Winning is fun... That said, I get more enjoyment out of seeing CH'ers realize the logic of this regimen and enjoying its benefits.

Take care

V/R, 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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Wayne

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Re: 123 Days PF And I Think I know Why
Reply #880 - Jul 19^th, 2012 at 1:04am

Thanks Batch, I certainly hope so.

Update:
Day 1 - Clear - some nagging shadows
Day 2 - Clear
Day 3 - got whacked with a kip 7 at 14:00. Very unusual, I haven't had an afternoon hit in a very long time. Not sure if this is a good sign or not, time will tell.

I've often thought that trying to get a hold of these things is like trying to fix a water leak with chewing gum. As soon as you get one part sealed it just starts leaking somewhere else. Almost as if there is a certain amount of pain stored up inside that just has to get out.

A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.

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Joshua CH.com Alumnus Offline Posts: 264 x0\|New York\|USA\|\|0\|0\|NY,New_York Gender:	Re: 123 Days PF And I Think I know Why Reply #881 - Jul 19^th, 2012 at 6:58am Had the D3 home test shipped to my mom in CT. Will advise results
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #882 - Jul 19^th, 2012 at 11:14am

Hey Wayne,

That's not a bad start. Given you appear to be responding, I'd bump the vitamin D3 to 20,000 IU/day with a 50,000 IU loading dose once a week.

When you're completely PF for a couple weeks using this dosing strategy, you can throttle back to just 10,000 IU/day.

Joshua,

Good move... There's always a way around some of the anal retentive rules some states set up to block inexpensive health care...

Noli ilegitimus carborundum.

Take care,

V/R, 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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Wayne

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Re: 123 Days PF And I Think I know Why
Reply #883 - Jul 23^rd, 2012 at 4:06am

Thanks for the advice Batch, have bumped up to 20k iu/day. Strangely we can only get 1000iu gels here so its like taking a handfull of bad tasting M&M's

. I have cut back a bit on the magnesium after noticing that the Multi vitamin also contains 300mg.

Am pleased to report days 4 to 6 clear, some short lived shadows on Saturday and Sunday, today the head has been as clear as a bell. I am feeling very hopeful.

A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #884 - Jul 23^rd, 2012 at 12:38pm

Hey Wayne,

Thanks for the update. I'm optimistic you'll continue to experience a favorable response to this regimen. Keep it up and your head will be as clear as the trout filled lakes and streams of New Zealand...

I know 20,000 IU/day vitamin D3 sounds like a lot, but it really isn't. Your skin can make that much endogenous vitamin D3 with as little as 20 minutes exposure to the UV-B in summer mid-day sunshine if clad in a bathing suit with no sun block.

You might check the Internet for available sources of the 5,000 IU vitamin D3 liquid softgel capsules.

Try to see your PCP or neurologist to get the lab test for 25(OH)D. Knowing the serum concentration of 25(OH)D that enables you to remain pain free of cluster headache is essential. In addition, making your physician part of this process can only help raise awareness of the highly probable link between cluster headache and a vitamin D3 deficiency.

Take care and please keep us posted.

V/R, 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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dhjacks CH.com Newbie Offline I love YaBB 1G - SP1! Posts: 13 x0\|San Jose\|USA\|\|0\|0\|CA,California Gender:	Re: 123 Days PF And I Think I know Why Reply #885 - Jul 24^th, 2012 at 1:24pm Update. No headaches in 12 days. I should be in the middle of a cycle. 30 days at 20,000/day followed by a couple of weeks at 10,000/day. I am so thankful.
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #886 - Jul 24^th, 2012 at 3:39pm

DH,

Outstanding news! Thanks for the feedback.

Judging by the dashed 25(OH)D response curve for a vitamin D3 dose of 20,000 IU/day and assuming a starting 25(OH)D serum concentration of around 22 ng/mL, your response to vitamin D3 and going PF into the "green zone" of 60 to 110 ng/mL after 18 days from start of regimen is right on track...

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Try to see your PCP or neurologist for a lab test for 25(OH)D to confirm your serum concentration of this vitamin D3 metabolite. If you can swing it, ask for lab tests for calcium and PTH (parathyroid hormone). Both should be "normal."

You should be able to throttle back on the vitamin D3 to 10,000 or 15,000 IU/day after a couple weeks without any fear of a relapse. As you can see from the chart above, no matter what dose of vitamin D3 you take, they all reach an equilibrium and stabilize after five to six months of daily intake.

Try to get a second lab test for 25(OH)D, calcium and PTH three months after the first test just to confirm you're in the right ball park for the concentration of this vitamin D3 metabolite.

I'm a chronic CH'er and after nearly two years on this regimen, I've found 10,000 IU/day vitamin D3 buys me enough 25(OH)D reserves to last 36 to 48 hours without any vitamin D3 intake before I start feeling symptoms of an approaching CH. 15,000 IU/day vitamin D3 buys me a good week of 25(OH)D reserves.

The good news is you now have an effective CH preventative... The other news is you likely still have this disorder. If you want to keep the beast away and remain PF, you'll need to continue taking a maintenance dose of 10,000 to 15,000 IU/day vitamin D3. That way your "next" CH cycle will be a non-event... You'll remain PF.

When you have the time, please take the anti-inflammatory regimen survey at the following link:

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The more evidence we can gather on the effectiveness of this regimen, the easier it will be to convince neurologists that conducting an RCT of this method of preventing CH is a must do...

Take care, thanks again for the feedback and please keep us posted.

V/R, 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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Wayne

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Re: 123 Days PF And I Think I know Why
Reply #887 - Jul 25^th, 2012 at 11:00pm

Thanks again for the advice Batch, I will try to get the serum concentration level checked but I think its going to be a lengthy road.
Cannot get any gels learger than 1000iu in NZ, they're controlled and only available through a Dr's prescription - no idea why.
More good news, cut the melatonin dose out and days 7 and 8 still clear

, I reckon I'll give it another 5 days and if I'm still clear then cut the Ergotomine.

« Last Edit: Jul 25^th, 2012 at 11:01pm by Wayne »

A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.

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Joshua CH.com Alumnus Offline Posts: 264 x0\|New York\|USA\|\|0\|0\|NY,New_York Gender:	Re: 123 Days PF And I Think I know Why Reply #888 - Jul 26^th, 2012 at 7:27am Finally went to the doc today to get D3 levels-- anxiously awaiting results. Still holding steady at 2 HA's a day on 25k/iu and the rest of the regimen.
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Re: 123 Days PF And I Think I know Why
Reply #889 - Jul 26^th, 2012 at 8:26am

I just joined CH two days ago and dvb recommended I check out this thread. It looked so promising that I stopped on the way home from work and picked up the D3 and Omega 3 and took my first dose as soon as I got home. It didn’t have an effect on my CH last night (had 2) but I wasn’t expecting immediate results. The reason I’m posting this is that I was wondering if it gave anyone else horrendous gas. At first it just sent my wife and kids running from the room (I’m thinking, added benefit

) but when the dog got up and left I got concerned. So I took another dose this morning and if I get the same results my coworkers may kick my out of the office. I’m wondering if it matters when I take my daily dose? I’d prefer to take it in the evening so I can torture my family instead of being known as Sir Farts Alot around the office. Also, do you think splitting up the dose (1/3 with each meal) could reduce the problem and if so is it still effective to take it that way.

Thanks Fred

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-dvb-

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Re: 123 Days PF And I Think I know Why
Reply #890 - Jul 26^th, 2012 at 10:59am

Hey Freddy,

Glad you decided to give this a try...I can only speak from my experiences, but I did not have any problems with gas (maybe a response to the Omega3? *Edit* - I just re-read your other post and see that your quitting smoking. I did experience horrific gas for a week or so when quitting - also I was unsuccessful but may give the gum a try as you are. Sorry if we're stinking up the thread here.) */Edit*. Reading various topics around here you'll notice we all react differently to things (what works for one, doesn't work for all / what effects one person one way may have the opposite effect for others Cheesy

Cheesy

). It's all part of the fun.

The first few days on the regimen for me, my cycle changed with the CHs becomming more frequent, but less intense, and shorter in duration (could've set my watch to it before that).

As far as splitting the doses, I started doing that when I was having shaddows regularly shortly before taking my dose of the D3 and co-factors for the day. It seemed to work. I've since just upped the D3 dose and began taking them all at once again (just seems easier to me to take 'em once a day and be done with it). That seems to work too.

Stick with it and give a fair chance and I think you'll be happy with the results. Batch should be along shortly with more difinitive answers (that man knows his stuff).

« Last Edit: Jul 26^th, 2012 at 5:21pm by -dvb- »

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #891 - Jul 26^th, 2012 at 3:14pm

Hey Wayne,

Thanks for the update... Your results so far appear to be a good indication you'll be able to come off all the other Rx med's in jig time... Be sure to keep your PCP/neurologist in the loop.

I've done some checking and it appears your Ministry of Health there in New Zealand is slowly coming out of the stone age with respect to how much vitamin D3 people need. More importantly, they've recognized the fact that too many of your countrymen are deficient in this very essential nutrient.

That said, like government bureaucrats here in the US and elsewhere in Western societies, they want to control how much of a good thing you get... hence the limit on strength of vitamin D3 softgels at 1,000 IU.

The task now is to try to find an Integrative physician there in your area who understands the benefits of vitamin D3 and who will prescribe it in higher concentrations. I sent you an email with some possible solutions in finding such a physician.

I also checked the net and it appears you can get lab tests for 25(OH)D at several medical labs there in Christchurch for $65... no Rx required.... That's about what it costs here in the US.

Freddy,

Thanks for chiming in... and good move on starting the anti-inflammatory regimen. I must say your post has had me laughing all morning...

If you understand the Carbon Credit scam... there must be a way of capitalizing on your prodigious production of gas... It would give new meaning to the notion of passing gas for fun and profit.

Dvb was spot on with his suggestion it might be the Omega 3 Fish oil causing this problem... although I'm not sure about the smoking bit...

We all have colonies of beneficial bacteria working in our GI tracts... Some of them are easily perturbed by a change in diet and react accordingly to let you know...

Accordingly, I suspect Omega 3 Fish Oil is the culprit triggering the miasmic room-clearing emissions... Roll Eyes

Roll Eyes

There's a simple way to find out... Stop the Omega 3 Fish Oil for a couple days to see if the atmosphere clears...

If it does, try taking one Omega 3 soft gel every other day for a while to let your GI tract adjust by growing more Omega 3 Fish Oil friendly bacteria...

Don't forget the cofactors. See the following link for more details:

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If you buy the Kirkland brand of calcium citrate at Costco, you get the right ratio of magnesium, zinc and boron as these cofactors are formulated into two of these tablets. If you can't get to Costco, Citracal Plus™ Bone Density Builder has a similar formulation and this supplement is available at most supermarkets.

I take Centrum Silver for the vitamin A as a single tablet contains the RDA for this vitamin. There are also calcium chews with vitamin K.

Make sure you see your PCP or neurologist for the lab test for 25(OH)D. Knowing your serum concentration of this vitamin D3 metabolite will give you a better idea how long it's going to take for a favorable response.

Doing this is important for a couple reasons... The first is I'm not a doctor... and it's always a good idea to keep your PCP or neurologist involved... if for no other reason than to alert them to the growing body of empirical evidence that suggests cluster headache is likely due to a vitamin D3 deficiency... and that the cessation of CH attacks correlates directly with a 25(OH)D serum concentration of 60 to 110 ng/mL, (150 to 275 nmol/L).

The online survey of CH'ers taking the anti-inflammatory regimen and my rough tally of posts here here in this thread at CH.com are consistent... 75% of the CH'ers who start this regimen experience a significant (>80%) reduction in the frequency and severity of their CH in an average of 10 days to two weeks... some in as little as 24 hours and others as long as a month...

An efficacy response this high significantly greater than the highest possible placebo effect for cluster headache medications... so statistically... this is a real deal...

Moreover, greater than 60% of the CH'ers who start this regimen are pain free by the end of the third week... and remain that way while continuing to take it.

Accordingly, if there's no response to this regimen after a week, I would up the intake of vitamin D3 to 20,000 IU/day with a weekly loading dose of 50,000 IU. Several CH'ers have found this dosing strategy gets them into the "green zone," a 25(OH)D serum concentration of 60 to 110 ng/mL, where they go pain free a little faster than the average response time at a vitamin D3 dose of 10,000 IU/day.

If you run into any resistance in obtaining this lab test from your PCP or neurologist, you can order the lab test for 25(OH)D for $65 from ZRT Labs at the following link. No Rx required:

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You can also call them at 866.600.1636. They even have an online DIY video at the above link that illustrates how to do the blood spot test at home.

I keep two of the ZRT vitamin D blood spot test kits on hand at all times...

Take care and please keep us posted.

V/R, 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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Radar63

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Re: 123 Days PF And I Think I know Why
Reply #892 - Jul 26^th, 2012 at 4:16pm

Hi Batch

Now been pain free for 2 months ish. Got the second d3 serum test back, I seem to be running pain free at 177 nmol/L. Slightly confusing as I went pain free at 193. Anyhow weather in the uk now good, so getting plenty of natural d3 as well as the recommended maintenance dose. Guess the next stage is to test bi monthly to try and avert the next batch. That should be next Mar apr time if things go as in previous years.

Be persistent guys with the regimen, it has so many benefits.

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #893 - Jul 26^th, 2012 at 8:29pm

Hey Ian,

Thanks for the update... You're comfortably in the "green zone" at your present serum concentration of 25(OH)D.

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As long as you keep your 24(OH)D in the green zone, I'm confident you'll sail pain free through the next Mar-April time frame.

Take care and thanks again for the update.

V/R, 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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Re: 123 Days PF And I Think I know Why
Reply #894 - Jul 27^th, 2012 at 6:40am

Thanks Batch. Good timing as I have an appointment with my PCP this morning. I've printed your response and will be bringing it with. I need to figure something out. Had one of my worst CHs ever last night. 3 hrs and I'd have to put it on a 9 on the kip scale. first time I ever considered having my wife drive me to the emergency room.

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Joshua CH.com Alumnus Offline Posts: 264 x0\|New York\|USA\|\|0\|0\|NY,New_York Gender:	Re: 123 Days PF And I Think I know Why Reply #895 - Jul 27^th, 2012 at 7:41am Just confirming the additional cofactors -- is this enough? 2,000 Omega 400mg Magnesium/1000mg Calcium (combo pill) Vitamin-A (part of multi vitamin)
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Re: 123 Days PF And I Think I know Why
Reply #896 - Jul 27^th, 2012 at 12:07pm

Batch,

I was at the pharm picking up more Zomig so I also picked up Citrical. I didn't have the information above so wasn't sure what to get. My question is, will this do (500 IU D3, 630 mg Calcium) and in what amount should I take it. I'm guessing I don't want to get all my D3 from this (I'd have to take 20 a day). Also, I want to thank you and everyone that has provided advice over the past few days. It's extremely helpful given this is turning into one of the worst cycles I've ever experienced. Maybe more importantly is how comforting it is to talk with folks that understand what you're going through.

Fred

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #897 - Jul 27^th, 2012 at 1:32pm

Fred,

Sorry you had a rough night. In looking over results from the online anti-inflammatory survey and comments from CH'ers in this thread, it appears roughly 5% of the CH'ers who start this regimen experience a temporary increase in the severity and frequency of their CH.

There's no real answer to why this phenomenon occurs. I suspect it's due to a temporary chemical, hormonal and or enzymatic imbalance caused by the supplements in this regimen. The good news is this phenomenon dissipates in most cases... and the affected eventually experience a pain free response. That said, a few CH'ers who encountered this phenomenon called it quits and stopped the regimen rather than sticking with it a little longer.

The Citracal tablets you picked up today should help.

I take the Kirkland brand of calcium citrate as two of these tablets are formulated with 500 mg calcium, additional vitamin D3, 80 mg magnesium, 10 mg. zinc and 1 mg. boron.

The basic regimen I've been taking since October 2010 is illustrated in the following photo:

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I take two of each as shown below:

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I also take a Centrum Silver multi-vitamin tablet to get my vitamin A and vitamin K.

How did the visit with your doctor go today... Had I known you were going to see your doctor, I would have warned you to be prepared for some push-back when you discuss this regimen. It's unfortunate, but some physicians get their knickers in a wad when they hear the vitamin D3 dose we need to take in order to elevate serum 25(OH)D into the green zone range of 60 to 110 ng/mL. Concentrations of 25(OH)D this high will also cause some physicians to shake their heads in disbelief...

What you can also tell your doctor the next time you see him are the empirical numbers collected to date with respect to the anti-inflammatory regimen. Since December of 2010, 200 CH'ers posted they've started this regimen, 150 of them reported a significant reduction in the frequency and severity of their CH, 120 reported going pain free and remaining that way.

I'm still crunching the numbers from the online survey of CH'ers using this regimen, but it appears episodic CH'ers enjoy a higher efficacy in preventing their CH with this regimen than chronic CH'ers. Although this data is still limited to 45 complete surveys, the efficacy for episodic CH'ers is 88% and 66% for chronic CH'ers.

Chronic CH'ers tend to take longer to achieve a favorable response to this regimen

This regimen is well tolerated and there have been no significant adverse effects reported. It appears this regimen can also be safely taken with other prescribed CH medications.

Finally, if the issue of safety comes up... Vitamin D3 is one of the safest nutrients known to man. Our bodies make it for free if exposed to sufficient sunlight. There have been no reported deaths due to vitamin D3... You can't say that about verapamil...

At roughly 20 cents a day, this is also the least expensive CH preventative available to us...

Please let us know the results of the visit with your doctor

Joshua,

My comments above on calcium and the cofactors should provide a response to your question...

Take care,

V/R, 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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Re: 123 Days PF And I Think I know Why
Reply #898 - Jul 27^th, 2012 at 2:47pm

Batch,
Dr. said go for it on the D3 and said he takes 50,000 a week so he wasn't concerned about my 70,000. He also had no problem adding the blood test you recommended to the tests I was getting done. This is just my PCP and he doesn't know crap about CH but he was interested in the treatment. I really wanted to ask why he takes 50000 but never got around to it. Thanks for the above. I'll add two of the Citracal, drop one of the 2000 D3s, and continue with my multi that has A in it. Thanks again - will keep you posted

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CDog CH.com Veteran Offline Posts: 163 Rockies Gender:	Re: 123 Days PF And I Think I know Why Reply #899 - Jul 27^th, 2012 at 3:17pm My d3 level is now at 105, still having the headaches. Have been on the regimen for at least 9 months...
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