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Joshua

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Re: 123 Days PF And I Think I know Why
Reply #925 - Jul 30^th, 2012 at 9:06am

Batch- FINALLY - I got my D3 levels back from doctor. It's 132ng -- I'm still getting hit 2-3 or 4 times daily, times are fluctuating, but normalizing:
1 around 17:00-20:00
1 after I fall asleep 22:00-01:00
1 early morning 04:00-05:00
SOMETIMES 1 mid-morning 07:00-9:00
I don't get the mid morning if I get the early morning usually.
.
At 132 and still getting hits, should I try to push it higher (I'm chronic.)

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #926 - Jul 30^th, 2012 at 9:38am

Hey Wayne,

Thanks for the great update and kind words. It's CH'ers like you who are giving this method of preventing CH it's legs. Without comments like yours, too many CH'ers would blow off any suggestion to give this preventative regimen a try.

Mike,

No need to be sorry about breaking the string... As we've all said many times, no method of headache intervention works 100% of the time... I suspect the efficacy of anti-inflammatory regimen for migraineurs will stabilize between 75% and 85%.

For reference, how much vitamin D3 are you taking daily along with the Omega 3 Fish Oil, calcium and cofactors: magnesium, vitamin K2, zinc and boron?

Take care and thanks for the comments.

V/R, Batch

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Re: 123 Days PF And I Think I know Why
Reply #927 - Jul 30^th, 2012 at 11:16am

Freddyz wrote on Jul 28^th, 2012 at 6:48pm:

Batch, Another very bad night last night. I broke down this morning and started the Methylprednisolone my neurologist prescribed. I had been holding on to it and didn't want to go down that road but things have gotten very bad. Thank god I got a script for imitrex epipens and got it filled yesterday afternoon or I would have ended up in the ER. Anyway, I'm sticking to the D3 regime but when the cycle ends I won't know if it's the D3 or the Methylprednisolone. Wish I could have been able to isolate the D3 to help you with your study.

Take Batch's advice about the O2. You may never need a triptan again.
I haven't pulled the needle out in years. If you do use that though, follow the Imitrex tip on your left column. It will save you money and the possibility of using unnecessary amounts of suma triptan to abort a single HA.

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #928 - Jul 30^th, 2012 at 12:24pm

Joshua,

Many thanks for the lab data and CH status. The short answer is yes, you can push your 25(OH)D a little higher, but only under a physician's supervision with labs every two weeks.

If your doctor is unwilling to go along with this, try to find an endocrinologist who is willing to do so. I'd also suggest a complete endocrine workup.

From the survey data and close contact with other chronic CH'ers, they tend to take longer to experience a response to the anti-inflammatory regimen. Chronic CH'ers also frequently need to take higher doses of vitamin D3 in order to elevate their 25(OH)D higher than most episodic CH'ers...

Unfortunately, even then, this regimen is not as effective for chronic CH'ers and there are some who don't respond at all even after six months to a year on this regimen.

In the mean time, lets get back to the basics... Please shoot me a PM or email with a complete list of the supplements you're presently taking, doses and brands.

Do you have oxygen therapy available? If not, you'll need a flow rate of at least 25 liters/minute if not higher for reliable aborts.

Some other things you may want to try include an alkalizing and anti-inflammatory diet. A good guide of food types that will elevate systemic pH (more alkaline - less acid) can be found at the following link:

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Scroll to the bottom of this web page and select food types from the green columns.

A good guide for an anti-inflammatory diet can be found at the following link:

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This is the GOMBS diet of super foods and it's compatible with the alkalizing food types. GOMBS stands for Greens, Onions, Mushrooms, Beans/Berries, and Seeds

What you're essentially looking for here is to limit the intake of red meat, adding chicken or fish and lots of salad. Cut out all refined sugar and starches completely. A little honey or agave nectar is much better for you.

You also need a serving of GOMBS at least once a day... A good rule of thumb for a GOMBS meal is a handful of each element.

I've found that broccoli soup or a 5-bean salad followed by a berry smoothy satisfies the daily GOMBS requiremt.

One of my favorite GOMBS meals is Broccoli Soup:
1 cup fresh broccoli (split into rosettes including stem)
1/2 cup sliced mushrooms
1/2 cup chopped onion
1/2 can garbanzo beans/chickpeas
2 to 3 large Jalapeno peppers
1 can chicken stock
1/4 cup sliced almonds or sunflower seeds
Juice half lemon
1/4 to 1/2 tsp curry powder
2 tbs olive oil

Cut the stem end off the jalapeno peppers, split lengthwise in half then scrape out the seeds and placenta with a spoon. This will cut the heat. Do this under the faucet to keep the capcasin mist out of your eyes and off your hands... Julienne, cube or dice the jalapeno halfs. Use food prep gloves if necessary.

Saute or sweat the sliced mushrooms, chopped jalapeno peppers and onions in a tbs olive oil, season with garlic powder and pinch of salt. I also like to use a dash of McCormick's Grill Mates Montreal Steak seasoning instead of salt.

Microwave the broccoli and garbanzo beams in a covered microwave proof container for 3 to 4 minuets. Before cooking, drizzle a tbs olive oil, the juice of half lemon over the broccoli bean mix. Season with garlic powder and a pinch of salt.

When every thing is cooked, dump it all in a blender along with the chicken stock seeds and curry powder then puree until it looks like split pea soup.

Season to taste with salt and fresh ground pepper. Top with a dollop of sour cream. If you want to kick it up a notch, add a dash or two of chipotle pepper sauce.

Just about any 5-bean salad recipe will work. Same with recipe for berry smoothies. I keep a bag of frozen berries from Costco in the freezer at all times.

Hope this helps... Take care and please keep us posted.

V/R, Batch

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TarHeels4Me

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Re: 123 Days PF And I Think I know Why
Reply #929 - Jul 30^th, 2012 at 5:29pm

Hi Batch et al...thanks again for the info. I did meet with the neurologist today (after a major CH..UGH). I also started on the Vit D3 and Fish Oil this morning. Murphy's law right...start the new regimen and have the worst headache so far. LOL. Had the blood test done today and Doc was very open to working with me on this regimen. Will keep you posted!!

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Brooke CH.com Junior Offline :) Posts: 27	Re: 123 Days PF And I Think I know Why Reply #930 - Jul 30^th, 2012 at 5:49pm Starting 1st dose last night. Took one this morning. I split it up so I take 1 of each twice a day (once in AM once in PM) so far today I'm having my 5:30pm-5:45pm attack right on schedule... but we'll see. At this point, I'll try anything!!
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: 123 Days PF And I Think I know Why Reply #931 - Jul 30^th, 2012 at 6:13pm Be patient. It took over 6 weeks for it to have a positive effect for me. Some people respond in a matter of days, but not everyone.
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Joshua

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Re: 123 Days PF And I Think I know Why
Reply #932 - Jul 31^st, 2012 at 8:45am

Brew- agreed, initially I had fewer hits (I'm chronic) but of late, a month in and with a level of 132ng/mL, my hits are coming on stronger and more frequently then ever (3 to 4 per day) - which is not an improvement for me over previous cycles. I have heard some get worse before they get better- so that's where I'm putting my eggs as I push my levels up a bit higher.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: 123 Days PF And I Think I know Why Reply #933 - Jul 31^st, 2012 at 10:41am You should also consider consulting an endocrinologist. You might have high serum levels, but perhaps one or more of your glands or organs are not functioning properly, thus inhibiting the proper conversion and absorption of the D3. It could be that you're merely pi$$ing it away.
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Re: 123 Days PF And I Think I know Why
Reply #934 - Jul 31^st, 2012 at 3:05pm

Ok!

Doctor's visit went great today. After explaining the regimen to my doctor her and I both sat at the computer and looked over this thread together. Not only was she encouraged but also very inquisitive.

We did the 25 ( OH ) D blood test today and I am looking forward to seeing the results. My Doctor is as well and as matter of fact this is also something she is going to consider trying on a few of her migraine patients as well.

Not a single problem getting her to agree to take me off the verapamil and Imitrex. She also expressed to me that not only is it frustrating for the patient but equally as frustrating for the Doctor as well due to the lack of quality treatments available to them to offer to the patient.

Day#5

Been having some shadows, and had one full blown attack severity and length were both significantly decreased.

Day#4

Day 4 had mixed results. 3 attacks one after the other in the early am. Atleast one of them went to 8 on the kip. The difference was that they were very short lived.

Will keep every one updated!

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Re: 123 Days PF And I Think I know Why
Reply #935 - Jul 31^st, 2012 at 10:00pm

Hi Gang,
Thought I would jump in for an update. Something interesting has happened over the last few week. I was getting ready to post that I have been pf for almost 5 months when the our old friend returned. It's been much milder than any episode that I have ever had. Over a two week period I've only had to abort three times and those weren't terribly high (maybe reaching a 5 or 6 at most). I have been very good at staying on the regimen. 10 000 per day of vit d + the co factors. The only change I had made was to avoid the fruit juice because of the sugar.

Here is the interesting part that may have triggered our friend. My wife, who is 33, had a stroke a few weeks ago. Additional testing revealed that she had a large benign tumor in her heart which was removed a couple of days after being found. (Now she will make a full recovery but will probably have to use a pacemaker for the rest of her life) To say this has been stressful for me is an understatement.
I noticed the shadows returning almost a week after my wife had been admitted to the hospital. I would like to throw out the hypothesis that perhaps under times of high stress our bodies use up more of our vit D reserves. I responded to the signs of the beast by cranking up the vit D intake a day. I changed from 10 000 to 25 000 per day. In the last few days I've only had one shadow that caused me to be unable to sleep so I've started to drop the vit d down (to 20 000 per day) and I also added the acidic fruit juice when i realized I was in session.

As time goes on I plan to return back down to the regular dose of 10 000/day. Looking back in hindsight it would have been nice to be able to get a vit d test done but I had a 2 year old and 4 year old to manage while mama was in the hospital.

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Re: 123 Days PF And I Think I know Why
Reply #936 - Aug 2^nd, 2012 at 7:21am

Hi Batch and Everyone!
To MemyselfandI...prayers dude to you and your wife!! Good to hear the increased VitD3 may be helping!

Okay..my update...as posted earlier this week...I started the VitD3/Fish Oil on monday morning; had two CH's that day. Tuesday..NO CH!...just some shawdows and minor pings. Yesterday...NO CH!..same as above....UNTIL Midnight last night...and the devil sneaked up on me in my sleep. He is a Sneaky rascal!!! It hurt pretty good at time it woke me up so I elected to use the Imitrex (generic) Shot that Doc gave me sample of on Monday. Shot worked great..CH was gone within 2-3 mins max. Slept until clock alarmed this am at 6:30. Just the normal CH hangover this morning.

Now....I had the blood test (25 OH) done on Monday and results came back yesterday. My level was 28.1 ng/ml which they said is low and if I'm reading all these posts correctly seems quite low from where it should be. Doc said the range should be 30-100 which seems like a very wide range!

Doc suggested that he prescribe 50,000 IU of VitD3 (one tablet per week). I wasn't sure that was better than taking the 10,000 IU's per day OTC. Batch, your thoughts on that? Doc did say for me to not take over 50k per week (so I assume I will take 5 days and stop 2 days)...or should I just get the prescription and take it once a week and not worry with the other days.

He wants me to do this for 6 weeks and then come back for re-test.

Batch et al..I'm taking the Fish Oil (Nature Made from Costco); but I'm only take the 2 softgels daily which is 2400g or mg I think. Should I be taking more?

Any other suggestions or thoughts? Oh I am taking the Centrum Silver daily (have been for years).

As always I extremely appreciate your input!! BATCH, I'm not sure if you get paid for all your hard work for us (I assume not); but I know the GOOD LORD is filling your crown with Jewels daily for us!!!!

Looking forward to hearing from you all..

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #937 - Aug 2^nd, 2012 at 10:01am

Hey All, I'll take the comments in reverse order... There's been a lot of interesting data and comments posted over the last few days.

Darrell, You've only been on this regimen for a few days and with a starting 25(OH)D serum concentration of 28 ng/mL... you've got a way to go in order to elevate your 25(OH)D into the CH pain free "green zone" (60 to 110) ng/mL

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As you can see from this chart, it could take upwards of a month to elevate your 25(OH)D from 28 ng/mL to 60 ng/mL at 10,000 IU/day vitamin D3. At an average of 7,000 IU/day as your doctor suggests, it could take upwards of 40 to 45 days to reach a 25(OH)D serum concentration of 60 ng/mL.

The following chart illustrates a comparison between a dose of 10,000 IU/day vitamin D3 and 20,000 IU/day... the dashed line.

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At 20,000 IU/day vitamin D3, it takes the average individual 20 days to get into the "green zone" at 60 ng/mL.

It's entirely possible you'll have a favorable response and go pain free before reaching a 25(OH)D serum concentration of 60 ng/mL so it may take less than 20 days at 20,000 IU/day vitamin D3.

As far as your physician's recommendation for vitamin D3 dosing at 50,000 IU vitamin D3 once a week... all I can say is we've had nearly 200 CH'ers taking 70,000 IU/week up to 140,000 IU/week for well over a 18 months with no adverse effects...

The most effective vitamin D3 dosing strategy appears to be 20,000 IU/day plus a 50,000 IU loading dose once a week. This is still a conservative therapeutic dose of vitamin D3 compared to what some RRMS patients take.

The following chart from another study by Garland et al, illustrates it takes a vitamin D3 intake of 50,000 IU/day for at least six months to generate a 25(OH)D serum concentration near the lower threshold of vitamin D3 intoxication at 200 ng/mL

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Accordingly... It's your call on how much vitamin D3 to take... and how long you want to wait for a favorable response... Show your doctor these charts and the attached study by Dr. Garland and Dr. Heaney.

For reference, my wife pops 15,000 IU/day (105,000 IU/week) vitamin D3 to control her migraines and loves how it makes her feel. She also kicked the heck out of 74 last December.

Regarding the Nature Made Omega 3 Fish Oil... Two of the softgels (2400 mg/day) is perfect... I assume you're taking the calcium citrate tablets with the cofactors as well.

MM&I,

I'm happy your wife is doing better... I'm not sure how I would handle the situation if my wife had a stroke... Is your wife taking the vitamin D3 regimen?

Regarding your vitamin D3 intake... not only is there a wide variation in the rate at which people metabolize vitamin D3 to 25(OH)D, there also appears to be a seasonal variation in how each of us metabolize vitamin D3.

I've been taking 10,000 IU/day vitamin D3 since October 2010... That said, there have been times when this wasn't enough and I needed to bump the dose to 15,000 IU/day.

As you can see from the first chart above, the average 25(OH)D serum concentration reaches a little over 80 ng/mL after 5 months at 10,000 IU/day vitamin D3. Again this is the average response rate. The only way to know for sure is to see your physician for a lab test for 25(OH)D. You might have your wife go in for the same test... Odds are she is vitamin D3 deficient.

Bumping your vitamin D3 intake to 20,000 IU/day should be sufficient... Adding fruit juice high in citric acid will help as well. I make my own lemonade and sweeten with Splenda.

Adamt,

Your doctor sounds like a winner. What a pleasant surprise... Please give her my email address and let her know I'll be happy to load her up with all kinds of supporting data on this regimen and stats I've collected on CH'er and migraineur responses.

Do let us know the result of your lab test for 25(OH)D.

Brooke,

Welcome to the group... Here's hoping this regimen will be as effective in preventing your CH as it has been for so many others. Please keep us posted.

Take care all and thanks again for all the data and comments.

V/R, Batch

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Brooke CH.com Junior Offline :) Posts: 27	Re: 123 Days PF And I Think I know Why Reply #938 - Aug 2^nd, 2012 at 1:22pm Been on for 3.5 days now (started sunday night)... monday had my normal beast times. Tues... only 2 and yesterday only 1... so far I am liking this outcome... I will keep posting! I wish I did labs to see what my level was before I started, but I guess it's too late now.
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Wayne

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Re: 123 Days PF And I Think I know Why
Reply #939 - Aug 2^nd, 2012 at 7:26pm

Hello All

Update, 16 days all clear now

, a very happy fella I am!

Life intervened and took me out of town when I was supposed to go for the 25(OH)D test. No worries, it may be better as when I go next week I will have completed 2 full weeks on the 20k/50k D3 regimen. I've kept everything else stable and am feeling wonderful. Friday afternoon is staring me in the face and I am confidently going to have a few beers after work.

I wish you all a restful PF weekend

Cheers

Wayne

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Magnus

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Re: 123 Days PF And I Think I know Why
Reply #940 - Aug 2^nd, 2012 at 9:29pm

My name is Magnús. I have had clusters for 30 years. Episodical.
Usually my attacks last up to three, five months each time. But it has varied over the years.

This cycle has been long and intensive for me. My seventh month was coming up. As usual oxygen, verapamil and Imigran nasal and injections have been my savior. Then after taking the advice from Batch i went on board with the D3 inflammatory regimen.

I started the regimen on the 11th of June after being in a cycle since february. I read every bit i could swallow from you here and been blown away by all the work Batch has put in this. Amazing work to say the least.

My daily dose started as follows:

D3 10.000IU
Omega 3. 2000
Silver centrum multi vitamin
Calcium citrate - 400mg to 600mg
Magnesium 200mg to 600mg
K2 45 to 90mcg a day
Boron 3mg (came five weeks into this)
Zink 15mg

I always took Calcium and Magnesium in the afternoons with a glass of Lemonade.

But the hits were getting worse at the same time and for the next following week. I upped the D3 doze to 20.000IU a day the next week and still no relief. After three weeks of this regimen i didn't get any better and no hope therefor. I kept taking it all the time still, because i had read here' that it could take some time to work through the system.
Sometimes i upped the dose to D350.000IU and the Calcium Omega and Magnesium aswell over this period of time. Changed the sequences of dozing, ect.

All the adjustments i did with the regimen didn't work at all. It seemed or seems that i was to be one of the 70% not getting relief.

I got the 23(OH)D test yesterday finally. The test was done 15th of July, which was the time i was really having a hard time with the demon. The 25(OH)D came out 218.06. According to all the post here I'm well above the target right? Yet, i was getting hit.
I did a full blood check for everything aswell. Calcium, Magnesium.. the works. Everything came out normal the doc said.

But i wasn't satisfied so i went to a Homeopath, that was highly recommended, for i was willing to try everything this time. Pain is a good motivator Wink

Well ok, and i told her my story.
She then put this thing over my head. Connected to a computer, a Bio feedback machine, you probably heard of it? To messure the state of your body. (somebody else is probably better at explaining this than me)

Anyway, you might say the computer crashed after it read my Bio feedback. Trauma was the word she used when she read my results ;( The result was that I was allergic to myself. Great! °-° (probably not the right english words here?) My liver was definably not functioning properly, i was allergic to wheat, deries, sugar, MSG, coffine, tomatoes, onion, meat, potatoes, soy, black pepper, gras, well almost everything i take for granted in my daily life.

So she gave me some ideas to try for a diet:
To cut out all out above and focus on raw food, fish, nuts, vegetables, fruits, greek yogurt, seeds and that kinda food. She added CUQ10 100mg to the mix. Asidophilus 20 billion units, Triphala and B12.

This was on wednesday last week. I have been almost pain free since. A sligh shadow two days ago, but thats it.
Maybe my cycle is over. i don't know. Or the liver rinsing a part of it? The diet?

I think it is all connected or then links to look into further. That somehow our neuro systems react differently when these things aren't in place, Hormones, liver function, D3 insufficiency, Omega 3. Wrong messages to our pineal gland that misinterprets the signal and wham bam, thank you mam!!?

My prediction is that Neuros will be out of of job in a few years time. hehe Wink

Liver rinsing for 10 days.
15 minutes before breakfast:
Squeeze half a lemon in warm water
3 table spoons olive oil
Ceyenne pepper.

Im going to get an full endocrine work up aswell as soon as i can.

I will let you know what happens after some time on this new diet too. I'm going to lower the D3 to 5000IU and she what happens.

I don't know if this helps but i wanted to share my story aswell.

Thank you so much all of you and you Batch for this wonderful work.

Magnús

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #941 - Aug 2^nd, 2012 at 10:52pm

Brooke, Wayne,

No worry about getting a starting value for your 25(OH)D serum concentration. The most important lab comes when you're pain free. That's the value you want to maintain or exceed...

Remember, the anti-inflammatory regimen is not a cure... You'll need to continue taking it to keep your 25(OH)D in the green zone to remain pain free.

The beauty of the 25(OH)D response curves that Dr. Heaney developed is they can be used in reverse to calculate your starting concentration at the dose of vitamin D3 you've been taking.

Wayne, I trust the beer test went well.

Take care and please keep us posted.

V/R, Batch

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Batch

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Re: 123 Days PF And I Think I know Why
Reply #942 - Aug 2^nd, 2012 at 11:49pm

Magnus,

What a fascinating post. Thank you for sharing it with us. I'm happy to hear life is starting to return to normal... As you say, there are so many factors involved, it's hard to say exactly what did the trick to send the beast running.

That said, a 25(OH)D serum concentration at 218 is meaningless without the units of measure. If it's 218 ng/mL, you're at the lower threshold for vitamin D3 intoxication and need to cut your vitamin D3 intake back to 5,000 IU/day for a month then retest.

It's comforting to hear your serum calcium level is still normal, so there's no indication of vitamin D3 toxicity.

However, if your serum concentration of 25(OH)D is 218 nmol/L (87 ng/mL), you're in the center of the green zone.

In short, what are the units of measure used in your lab test for 25(OH)D? Knowing that will help connect some of the dots...

The exciting news is your allergies. You may have broken the code why some CH'ers don't respond to the anti-inflammatory regimen...

I've said many times in earlier posts that there have been a number of CH'ers with serum concentrations of 25(OH)D in the "green zone" 60-110 ng/mL, (150-225 nmol/L), who continued to get hit.

A good number of these CH'ers also reported one or more comorbid conditions. In your case, it appears to be a major allergic reaction to several food types and possibly liver functions that were out of whack.

Your doctor was spot on by putting you on an anti-inflammatory diet. From what you've listed, I'd say it's the GOMBS super food diet (less the Onion). A serving of Greens, ~~Onions~~, Mushrooms, Beans Berries and Seeds every day. Cut out the red meat, wheat, sugar and high starch food types. Add fish and chicken...

Taking lemon juice and olive oil are also alkalizing food types that elevate serum pH making it less acid and more alkaline.

Please let us know the units of measure for your 25(OH)D lab test and keep us posted.

And yes... I agree with your comment on neurologists... If the neurologists who treat us don't come on board, start testing for 25(OH)D and start prescribing this regimen... a lot more CH'ers and migraineurs are going to vote with their feet and start seeing an endocrinologist or homeopathic physician instead for their headaches.

Take care, thanks again for the fascinating back brief and please keep us posted.

V/R, Batch

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« Last Edit: Aug 3^rd, 2012 at 2:01am by Batch »

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Re: 123 Days PF And I Think I know Why
Reply #943 - Aug 3^rd, 2012 at 8:04am

Hi again

Yes sorry, the 25(OH)D test came out as 218.6 nmol. I had the doc spell it out for me this time Wink

that should be ok or?

Well, It was the Homeopath that put me on this new diet. Not sure if a doctor would do the same.

The statistics show that we are most of us are, Caucasian males right? = D3 obsorbion or liver function bad in our case and then D3 is not a vitamin yet a hormone? There are just to many bells ringing in my head too because of all of this work you've done Batch and for what I'm experiencing. D3, Hormones, diet, Omega.- Ding!

Im much calmer and focused these days and my head is top clear, yet i know how easily i can swift in this happier mood when the beast is out of my system, so i take one day at a time. I have been writing down a diary everyday for the vitamins and what i eat, since i stared this regimen, my moods and activitys from morning to bedtime. Just to keep a record for me.

I might mention that i meditate for 10 and sometimes up to 20 minutes a day, whenever i get a moment i try calm my head
(Its still difficult) been doing that for five, six years. Been lazy at it this cycle though for its been hard to relax and empty your mind when its full of anxiety and restlessness, knowing how the beast behaves. But when i sinc in to it and can relax, i totally feel the benefits of it and the severity of the attacks have been lessened these five past years.

The regularity of my diet every two three hours is a must today. At least when I'm finding this out. That was not been old norm by no means. Ate when i felt hungry and that could be five to seven hours between sometimes.

Mushrooms are really good for the liver i heard and experienced. I felt that after trying to Bust in May. (not sure if the Icelandic shrooms are effective enough) The following days my toilet activities in the mornings and well being where super duper for a few days or so;) So there is another connection i think that the liver comes in the equation, busting on shrooms i mean. Aside from Psilocybin. Or is it the Psilocybin that does it?

I exercise almost everyday in the summer time. Basketball, bicycling, walking and such but it can be difficult during wintertime (i live in Iceland) I must be careful because during a cycle activities might provoke an attack and then i tend to loose a lot of weight so it has always been a struggle. I read here that D3 does that to?

I smoke and have smoked cigarettes (and weed) all this time. Ive heard that nicotine is a factor.. Im smoking now and I'm fine Roll Eyes

I forgot to mention the my Homeopath recommended a glass of Spirulina and then a wheatgrass snaps, three times a week. And then she recommended that i should see a Cranio something something specialist...?? (can't find the english word here, goggle translate didn't help) Because she saw in the bio feedback result that i was stuck or locked in my neck muscles to the scull ( im really bad with these words gyes hehe) so i should go see this specialist. This specialist (i don't have the name for, doh) helps to balance our spinal and fluids. (i will find that name Grin

)

These kinda Blockades through out the years, might be interfering?

Two weeks ago i started going to these amazing Chinese massagesist up here, (didn't think it was related to cluster) tvice a week for my body and especially my left side was in a really bad shape after all this suffering through out the years. Im stiff as a rock and my muscles are very very tight, stuck almost.

I get my clusters on the right side always, and during 30 years of suffering on the right side, my left side of the body has been trying to take the heat of the pain, so to speak. Protecting the right side. While the right side was always trying to relax on the pain. This is my take on it at least. Im twisted and bended after all this time which they are no trying to help me with. Has anyone experienced this?

I will keep you posted on my story.

Magnús

p.s.
I don't miss my burger and coffee at all, by the way Shocked

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Magnus

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Re: 123 Days PF And I Think I know Why
Reply #944 - Aug 3^rd, 2012 at 11:01am

I want to have as much out here if it makes a difference for anybody. Smiley

Im always forgetting something.
My Homeopath said stay out of formalin aswell, its in cosmetics, i think they even put it in cigarettes. I smoke only rolling tobacco and i dont think they put it in them. Then eat Sardinas and Eggs is ok yet stay out of Tunafish and Beer.(rats)

Thats it!
Sorry, just wanted to get this out aswell. For allergic - hormones reasons maybe and such.

Magnús

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Brooke

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Re: 123 Days PF And I Think I know Why
Reply #945 - Aug 6^th, 2012 at 12:27pm

I am reading your posts and finding it so interesting! I keep trying to seek difference answers as to why I was a healthy normal 23 year old girl one day and the next having 4-6 horrible pain attacks a day for months at a time. I have been on this for a week now. I have been PF for 5 days. I adjusted it a little because of the different vitamins I found. I take a k2 combo that has 2000iu of d3 so I take 2 of those and one of the 5000iu ones. The only one I havent been taking everyday is the fish oil because I accidently left it in the car and it melted into one huge ball. (going to replace it in the next day or 2) Here is what I have been taking though: daily amounts :

d3 9400 IU
k2 90 mcg
calcium 666 mg
magnesium 266 mg
zinc 10 mg

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Batch

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Control The Beast With
O2 & D3 You Must

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Bremerton, WA
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #946 - Aug 6^th, 2012 at 2:13pm

Hey Brooke,

That's wonderful news. Your time to a favorable response after starting this regimen is consistent with the data collected from the anti-inflammatory survey plotted out below:

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This data is still limited and preliminary, but it's starting to indicate a clear trend. We need more CH'ers who have experienced either a significant reduction in the frequency and intensity of their CH or they've been on this regimen for at least a month to take this survey.

The goal is at least 100 completed surveys... So far we've only 45 and some have skipped the questions on response times.

Try to see your PCP for the lab test for serum 25(OH)D.

The Omega 3 Fish Oil acts as an anti-inflammatory and studies have shown it helps lower total cholesterol and blood pressure.

You might want to consider starting the rest of your family on this regimen.. The potential health benefits are hard to pass up.

Take care and please keep us posted.

V/R, Batch

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« Last Edit: Aug 6^th, 2012 at 2:36pm 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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TarHeels4Me

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Re: 123 Days PF And I Think I know Why
Reply #947 - Aug 6^th, 2012 at 9:35pm

Hi Batch et al...
Sorry I've been awol a few days. I was having more and more of the CH's and so on Saturday 8/4...i went onto the prednisone. I'm still doing the VitD3 Batch and I've increased it to 20K IU per day in addition to the prescribed 50K IU per week; so 70K per week.
Now, the Prednisone has never worked great by itself (ever since Sansert became extinct) I've had mixed results. And sure enough the last couple days have been just a steady ache (albeit not too bad..maybe a KIP 2 max). I did just get a prescription filled today for the Imitrex pens...they only will fill 8 per month. UGH...I already used the 3 sample Pens Doc gave me last week!

Ok, so I'm comitted to staying with this VitD3 regimen also. Batch, I counted up the Calcium I'm taking and it's a little over 1000 mg per day (via all the other stuff I take). Is that too much?

And where do I find the survey? Is it in this Thread? If so, I'll go fill it out or do you have a link to it.

thanks all!

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: 123 Days PF And I Think I know Why Reply #948 - Aug 6^th, 2012 at 10:08pm Might be a dumb question, but is there a way to know if I already took this survey? I take so many surveys, it's sometimes hard to keep track.
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Batch

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Re: 123 Days PF And I Think I know Why
Reply #949 - Aug 7^th, 2012 at 1:46am

Hey Darrell,

Any word back on the lab test for 25(OH)D? That's going to give you a ball park indication on your potential response time for this regimen.

As strange as this may sound, taking 20,000 IU/day vitamin D3 plus the 50,000 loading dose once a week for a total of 120,000 IU/week is still a conservative dose.

Conservative that is, when you consider, some Relapsing Remitting Multiple Sclerosis (RRMS) sufferers take upwards of 350,000 IU/week for up to three months to control their RRMS. Moreover, they do this without any fear of vitamin D3 intoxication... but they do test for serum concentrations of 25(OH)D, calcium and PTH twice a month just to play it safe.

A 1,000 mg/day calcium is fine. That's the Recommended Dietary Allowance (RDA) from all sources for folks our age.

You can find the link to the anti-inflammatory Survey within the following post here at CH.com:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Or you can just click on the following link. It will take you directly to the survey:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Darrell, you've only been on this regimen for a week... so give yourself enough time for a favorable response or one month on this regimen whichever occurs first before taking the survey.

Brew, Good question... We originally set up the survey so it would only accept one submitted input per CH'er. This may have changed to allow CH'ers to update an originally submitted survey, but more than one survey per CH'er will be flagged so we don't double count. Give it a try.

It's also important to answer as many of the questions in this survey as possible. Be sure to comment on other methods of CH intervention you've tried.

Take care and please keep us posted.

V/R, Batch

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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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