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  New CH.com Forum › Cluster Headache Help and Support › Medications,  Treatments,  Therapies › How can I get D3 to work like it did 2 yrs ago?
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How can I get D3 to work like it did 2 yrs ago? (Read 10531 times)
B Allen
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How can I get D3 to work like it did 2 yrs ago?
May 10th, 2015 at 7:26pm  
I'm doing something wrong and would love the support and advice of the members of this group and Batch.  2 years ago I believe the D3 regimen ended a 9 month episodic cycle.
Clusters have been back for 5 mo. but once every two weeks or less.  However, for the last 2 weeks I'm having multiple CL almost every day.

For the last 11 days:

D3 50,000 iu
fish oil 1000mg
magnesium 500 mg
calcium citrate 800 mg

also taking
verapamil 240 mg
depakote 500 mg

(I abort all CLs w/ Oxygen, but had to take one sumatriptan last week traveling (ill never do that again, if I can help it due to rebound))

I believe in D3, what am I doing wrong?

Thank you for any help and support
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B Allen
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #1 - May 10th, 2015 at 7:30pm  
Forgot to add D3 blood level was 52 about 3 wks ago
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #2 - May 10th, 2015 at 7:45pm  
Until Batch gives you a proper answer:

1. You didn't mention Vitamin A, Zinc, Vitamin K and boron, which are all cofactors of D3 and may be crucial for the regimen to work.

2. 50,000 IU for 11 days is a lot. You are probably deep into the "green zone", unless you didn't absorb the D3 that good because you lacked some of the cofactors. So it's a good time to get checked.

3. You can get Vitamin A naturally from carrot juice, sweet potatoes or chicken liver.

good luck.
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #3 - May 10th, 2015 at 10:04pm  
Maybe you're not doing much wrong at all, but you'll get a response from someone here if you are and get you straightened out. I was just about to ask the same question cause I'm getting killed out here in Seattle, maybe there's something in the air. I think I'm following the regime correctly and also added 2 to 3 Benadryls a day cause I do have allergies. I dropped a 1000 lbs of pressure on a 92 cubic foot tank Friday night trying to get the beast under control. I'm into daytime mode now too so I know this cycle is going to be really vicious and I'm only a week and a half into this episode! Oxygen has always worked in the past, don't know why it was only semi successful the other night. I did try something a little different last night -- Instead of huffing at a high rate, I'd fill my lungs full and then hold my breath for 10 or 15 seconds and repeat till the stabbing went away, seems to work and uses less oxy. We'll see. Hang in there,(I know, what choice do you have?)

   Here's to hoping D3 will start working for the both of us.        Sean
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Batch
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #4 - May 10th, 2015 at 10:22pm  
B Allen,

Thanks for the update... and good questions...   For starters, 11 days of vitamin D3 at 50,000 IU/day is a healthy total loading dose of 550,000 IU of vitamin D3. 

If your starting 25(OH)D was 53 ng/mL, then your present 25(OH)D serum concentration should be around 110 ng/mL based on an average response to dose of vitamin D3. 

Accordingly, it's a good idea to drop the daily vitamin D3 intake to a maintenance dose of 10,000 IU/day.  I'd also stop the calcium supplements for a week or so until the vitamin D3 is actively preventing your CH.  Stopping calcium supplements has helped a few CH'er improve their response to vitamin D3.

A serum concentration of 25(OH)D of 110 ng/mL is not a concern.  I've had several CH'ers take their serum 25(OH)D up to 190 ng/mL while under a physician's supervision with frequent labs for serum 25(OH)D, calcium and PTH (Parathyroid Hormone) with no problems noted.

There are a couple possible reasons why you haven't responded by now...  The first is the present anti-inflammatory regimen suggests a 3-month course of vitamin B 50 to address any possible deficiencies among the seven B vitamins.

The second and likely more probable reason why you haven't responded is you're likely experiencing an allergic reaction to tree pollen (allergic rhinitis).  Some allergy symptoms are obvious... stuffy sinus, eyes feel like they have dust in them, puffy face...  Other allergies may be sub-clinical, i.e., no outward or obvious symptoms... 

In either case, allergic reactions trigger the release of histamine and that results in a generalized inflammation that can affect the trigeminal ganglia and rest of the brain for that matter...  If you face is a little puffy and sinuses a little stuffy, imagine what the brain looks like...

I encountered this problem in early March when the Alder and Bigleaf Maple pollen was blowing around like a dust storm around the yard.  My black pickup looked like it had been dusted with a bag of Portland Cement.

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I'd been away on travel for nearly two weeks and return on the 9th of March to find my pickup in the above condition...  I knew this was going to be a problem so upped my vitamin D3 intake to 50,000 IU/day... 

Within 12 hours of returning home, the allergy symptoms were obvious... 24 hours later, I fell out of CH remission... I'm chronic and normally keep my 25(OH)D between 80 and 100 ng/mL... so thought the vitamin D3 loading dose would help.

Nearly a week later with no change in my CH pattern of 3 hits a night, the clue bird made a low pass and my "Good Idea" light came on bright and flashing...  "Treat The Allergy !!!"

The treatment solution was Benadryl (Diphenhydraming).  Benadryl is a first-generation antihistamine that passes through the blood brain barrier to block histamine receptors.  It takes roughly 3 hours to reach a maximum serum concentration and its half-life in adults is 10 to 12 hours...

That makes two (2) 25 mg tablets a day, one in the A.M. and one 12 hours later a good dose.  Benadryl is also a mild CNS depressant at this dose and it will make you drowsy so try not to drive if at all possible.  If you do need to drive to work and back, take a single 25 mg Benadryl tablet when you're home for the night...  Drowsiness shouldn't be a problem the next morning.

Within 12 hours after starting the Benadryl I experienced a significant decrease in allergy symptoms.. 24 hours later, the frequency of my CH hits had dropped to one minor hit.  By 48 hours after starting the Benadryl, I was again completely CH pain free so I dropped my vitamin D3 intake to 20,000 IU/day.

If you stop and think about it... it's difficult for a molecule of Benadryl to block a histamine receptor if that receptor is already occupied by histamine...  That makes it important to maintain a constant serum concentration of Benadryl by taking a 25 mg tablet every 12 hours...

I've since tapered my vitamin D3 intake back down to a maintenance dose of 10,000 IU/day.  However, as there's still some spring pollen floating around in the yard, I still need at least one 25 mg tablet of Benadryl to stay CH pain free.

I keep the following link updated with the latest changes to the anti-inflammatory regimen: 

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As usual, I'm obliged to make the disclaimer that I'm not a physician and that the above information was provided for discussion purposes only... Be sure to discuss the above with your PCP or neurologist...  If anything, we might just educate them on what really works to prevent CH without all the onerous side effects...

Take care and please keep us posted.

V/R, Batch
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Hoppy
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #5 - May 11th, 2015 at 2:54am  
Hi Allen,
Did you keep taking the vitamin D3 regiment after your
last cycle! Because you need to keep taking it for the rest
of your life. With the Calcium supplement best to stop
taking it as it can interact with the Verapamil. I also
noticed your not taking a multi vitamin, this is important
because it contains all the other ingredients you need.

Hoppy.
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« Last Edit: May 11th, 2015 at 2:59am by Hoppy »  
 
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #6 - May 12th, 2015 at 10:58am  
Batch's addition of the B-50 has made quite a difference. It was showing that refractory chronics were losing the regimen relief but the addition of the B-50 has made a big difference...Good luck!
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Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever!
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Batch
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #7 - May 13th, 2015 at 4:52am  
Hey Sean,

You've almost got the right breathing technique for oxygen therapy... but not quite... Try the following...

Stand, drop your jaw like saying the word "Haw"...  Standing gives your diaphragm full range of motion and that helps ventilate the lungs more effectively when breathing through the mouth.

Exhale forcibly and when it feels like your lungs are empty... they're not... do an abdominal crunch and hold the squeeze until your exhaled breath makes a wheezing sound for at least a second.

Then throw your shoulders back and inhale a lungful of air as fast and as fully as possible then repeat the the exhalation sequence.  Keep repeating this complete sequence for at least 30 seconds....  Then inhale a lungful of 100% oxygen and hold it for 30 seconds...

You should start feeling the symptoms of paresthesia - a very slight tingling or prickling of the face, lips, chest, hands and feet.  You may even feel a little dizzy.

After 30 seconds, repeat the exhalation technique and restart hyperventilation with air for another 30 seconds.  Three to four of these cycles should bring the pain down to zero...

Hyperventilating at forced vital capacity tidal volumes with the above breathing techniques pumps out CO2 faster than your body generates it through normal metabolism.  This increases your arterial pH making your arterial blood more alkaline.

As blood hemoglobin's affinity for oxygen increases as the pH goes up, the hemoglobin carries more oxygen to the brain.  This helps abort a CH.

The increased pH also triggers the body's homeostatic mechanisms that control pH.  They sense the low CO2 and higher pH so signal the lungs to breathe more slowly, the heart to beat more slowly and the big one... these mechanisms signal arteries and capillaries in the brain to constrict... This also helps abort a CH

pH homeostasis does all this to slow the flow of blood to the lungs in order to let the CO2 levels build back to normal.  However, as you are intentionally hyperventilating, you're inducing cerebral vasoconstriction with increased arterial oxygen and these two effects result in a CH abort much faster than if you were breathing 100% oxygen at a normal respiration rate.

I know that may sound confusing... but it works.  The following chart illustrates the benefits of hyperventilating with oxygen therapy or breathing oxygen at flow rates that support hyperventilation...  Both methods result in very rapid aborts.

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Participants in this pilot study either hyperventilated with an oxygen demand valve or used a 0 to 60 liter/minute oxygen regulator set at 40 liters/minute and a ClusterO2 kit NRB mask... 

As you can see, abort times were 3 to 4 times faster with hyperventilation than when breathing 100% oxygen at a flow rate of 15 liters/minute.  The average abort time at oxygen flow rates that support hyperventilation was 7 minutes to a pain free state across pain levels 3 through 9 on the 10-Point headache pain scale.

Soooo... holding your breath without first hyperventilating for at least 30 seconds with air or oxygen... tends to build blood CO2 concentrations and that slows the abort time.

Hope this helps...

Take care,

V/R, Batch
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B Allen
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #8 - May 13th, 2015 at 5:21pm  
Stopped calcium.  Tried Benadryl for two nights and had two nights pain free.  Was out surrounded by incredibly thick tree pollen today and had afternoon CH today (not saying causation, could just be suggestive?).  Oxygen was not aborting, so incredibly grateful to get breathing technique (and burn less oxygen-huge hassle).  I'm going to buy EXACTLY what Batch uses instead of cobbling.  Want to start B50 too.  I cannot express how much it means to have all of you on my side.  I'm really at my wits end, and you all give me the strength to push on and try to beat this thing back.  Also my neuro has asked me to increase depakote to 1000 (from 500) and increase verap to 360 from 240 which i plan to do as well.
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B Allen
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #9 - May 13th, 2015 at 5:32pm  
The multi contains calcium (decrease verapamil effectiveness), should i take the multi?
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B Allen
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #10 - May 13th, 2015 at 5:42pm  
Also, should note I'm typically episodic with 2 yrs between cycles, but cycles have been getting longer lasting 6 months or more
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #11 - May 13th, 2015 at 6:02pm  
Hi Allen,
When taking a Calcium supplement you need a six hour gap
before taking your next dose of verapamil. So, maybe take
the multi vitamin before going too bed.

Hoppy.
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B Allen
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #12 - May 14th, 2015 at 5:21pm  
B Allen Hyperventilate not improving oxygen results.  Still gettting one cluster a day in the afternoon.  Huge weeklong business trip ahead.  I think oxygen (which isn't really working well anymore) is so difficult to use that I'm considering doing a round of steroids to get through the week even though I know the headaches will come back even stronger in a weeks time.  This week long trip is really important for my career advancement.  What should I do?  What would you do?  Was Batch advocating taking Benadryl every day?  I can find no corroborating evidence that Clusters are caused by pollen allergy.  It's not that I'm skeptical, it's just that before I walk around like a zombie all day, I'd like to know that it's going to work.  At this point I'll try just about anything.  So what do i have to lose?  I guess i could cut the 25 tab in half.  I'm going through an E tank a day.
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #13 - May 14th, 2015 at 9:17pm  
B Allen,

Take 3 to 4 Benadryl a day and up the vitamin D3 to 20,000 IU or 30,000 IU/day.  That should swing the balance of power in your favor...  A Benadryl tablet every 4 hours is no big deal unless you're driving and haven't had much sleep.

There's not enough calcium in the Mature Multi to interfere with verapamil...It appears it wasn't working all that well anyway.

If you need to be sharp at a business meeting after taking Benadryl... grab an espresso or two a few minutes prior... That should wire you up just fine...

Take care and please keep us posted.

V/R, Batch
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« Last Edit: May 15th, 2015 at 12:15pm by Batch »  
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #14 - May 15th, 2015 at 12:07am  
Batch,     Thanks for that info, I wish I'd have checked back sooner. the last 3 days haven't been much fun and I haven't been good for much of anything. Monday morning at work I went through a whole full tank trying to kill 2 back to back ch's, failed and just had to ride it out. Fortunately it didn't turn into truly bad one but I've had such good luck in the past with oxygen that I think I'm getting chicken.

      I added K2 to the program 2 days ago and today has been a good day, couple of shadows that tried to blow up but were easily killed. I'll give your advice a a healthy try tonight.

                       Thanks,   Sean
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #15 - May 17th, 2015 at 8:08am  
Keep at it Sean, for a lot of us, new things take some time, others, it works straight away
Hoping you find that balance point where everything works, It took me 18 months !
Good luck with it all

regards
colin
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Sean McE
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #16 - May 17th, 2015 at 1:25pm  
Thanks Blacklab,  If my memory serves me correctly (and it might not) you joined about the same time I did in May or June of 2013 and we were both starting the D3 program at the time. It sounds like you've had some success with it and stayed on it. If so that's awesome. My cycle back then ended after a total of 4 weeks which never happens but I relapsed a month later so the devil got his 8 weeks out of me anyway. I can't remember if I backed off the D3 or not. If so I'll not make that mistake again! Anyway,   Hello again.

                          Sean
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blacklab
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #17 - May 18th, 2015 at 3:48am  
Hi Sean, Yes, I think we did start at the same time !
         I have had some success with the regime Yes, but its not been without its drama. I've stayed on the regime right through since the start, adding the Vit B 3 month course, and also the K2. To start with, it didn't end my cycle, I had to endure that to the end, It was frustrating seeing others respond so quickly !  But, the worst I get now, is heavy shadows, and if I do get hit, the worst its been has been a Kip 4-5  I can live with that any day of the week.
I am still taking a small dose of verapamil, 180 mg, Ive dropped the calcium and try to get a lot of my magnesium intake from food products, as those pills with fish oil added in, sure have a loosening effect on me  LOL
Ive recently started taking a good probiotic daily, as im convinced that its a stomach absorption reason that the hole regime differs from person to person and so far so good, touch wood !
But I still remember the first couple of cycles, pre regime days, kip 8-10, 6 hits a day, high doses of verapamil and maximum daily intake of Imigran, never want to go back there !
I consider myself pain free, I just have the occasional speed bump in the road !
Sad to hear that the beast has returned to give you a belting !  I know exactly how frustrating it is Sean, when it happened to me, I just persisted with titrating up with the D3, playing with my magnesium levels, etc etc trying to find that sweet spot where I could banish the beast back to where it came from.
By the way, all my blood tests through out the 2 odd years have come back in the clear from any form of intoxication, I realise every ones different, but it gave me the confidence to really titrate up with D3, and find where my levels are best at to effectively act as a preventative,  My sweet spot seems to be around 220-250 nmol when I'm in cycle (which is about 100 ng in your scale) But I have been a lot higher but once the cycle goes, I drop down to somewhere around 200 nmol. I guess I'm one of the ones that the regime doesn't make me completely pain free, but one of the ones that it dramatically reduces the symptoms, I can live with that.
Any way, great to hear from you Sean, I do hope you get on top of your current cycle and get back to being pain free,  stay in touch and let us know how your going !
great to hear from you,  good luck

colin
p.s    anything you change, either with the regime, to try and see if it makes a difference, note it down, its great to look back on these as a reference !    cheers 
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B Allen
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #18 - May 27th, 2015 at 5:01pm  
Hi Everybody!
I'm checking in after 2 wks.  Took the prednisone 12 day taper during my trip.  No headaches occurred.  (was in CA vs GA) Last day of steroids today.  Had first cluster last night.  Maintaining 20k IU D.  Also taking 1000 Depakote, 320 Verap. Upping verap to 480.

Feels like 20k IU D just aint getting it done.  I don't know.  What am I missing?
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #19 - Jun 2nd, 2015 at 2:49am  
B Allen,

Sorry to be so slow in responding... Was out of the loop and off the net in Pelican, Alaska fishing for the last two weeks...Rough seas but still managed a 50 lb box of king salmon, halibut, lingcod, yellow eye and black sea bass...


The good news is you respond to prednisone...  That means vitamin D3 should also help prevent your CH if conditions are right...  Make sure you're taking at least 400 mg/day magnesium...  It's essential to make vitamin D3 work properly.

You may need to start the 3-month course of vitamin B 50 if you haven't already done so...  I'd also suggest two Benadryl (Diphenhydramine) tablets a day, one every 12 hours for a couple days then drop to one tablet a day.  That's half my original suggestion as I've found 2 tablets a day is more than sufficient to counter most allergic reactions.

I know it sounds strange... but an allergic reaction produce a flood of histamine and that can make just about any CH medication less effective...

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Jun 2nd, 2015 at 3:27am by Batch »  
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #20 - Jun 8th, 2015 at 7:55am  
Great Catch Batch!  Thanks for checking in.  D3 Blood level is now 129.  Recall I've been taking 20k IU for a few weeks.  Dropping to 10k IU unless I hear otherwise.  (also taking all co-factors except the multi-vitamin w/ calcium that might interfere w/ verap)  Where do i find the amounts  for the vitamin b 50 3 month plan? Last week was a good week with shadows on only 2 days out of 7.  (Verap at 480, Depakote at 750 (which reduced spacey feeling).  I think we may have leveled the plane off and are climbing out?
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #21 - Jun 8th, 2015 at 10:51am  
Hi B Allen, below is a link for 2 months of B50

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All the best
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #22 - Jun 8th, 2015 at 3:47pm  
B Allen,

I wouldn't worry about the verapamil...  It's likely it wasn't working all that well so the 220 mg of calcium in the Mature Multi should not pose a problem.  You can also separate the verapamil and Mature Multi doses by 12 hours to reduce any potential loss of verapamil effectiveness.

Take care and please keep us posted.

V/R, Batch
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #23 - Jun 9th, 2015 at 1:52am  
Batch,    Something told me you were a fisherman, now I know.  Here's an update on my results with the D3 regimen---- Started on May 2nd and total amount for the month was about 600,000 iu, added 1 capsule of N-Acetyl-L-Cysteine (500 mg) daily to the regimen on May 16th and saw the first positive response on The 17th (coincidence?). The rest of that week was mostly positive and then improved from there. I dropped my nightly dose of imitrex on the 26th with no negative results and dropped down  to 10,000 iu d3 on June 3rd and have seen a slight uptick in shadows but still PF. Still taking the l-cysteine.   When I think back to what I used to go through this is amazing. I haven't had my levels checked yet which is why I dropped to 10,000 iu, but till I get tested I'll keep it there unless I start getting hit again.

        On another note, about those fish.  I fish the Gig Harbor side and up to Pt Richmond all summer for Kings and Vashon for Pinks casting with light tackle. It's not Alaska--- it's called fishing not catching but we do pretty well considering it's the South Sound. If you would like to meet another clusterhead and his wife (if the boat leaves port and she's not on it, I'm in deep doodoo. Besides, she catches more fish than me). Family included. Send me a PM, I'd be honored. Gig makes for a good pick up location.

                      Sean

P.S I'm of the downrigger, troller persuasion.
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Re: How can I get D3 to work like it did 2 yrs ago?
Reply #24 - Jul 24th, 2015 at 11:29pm  
Batch and gang.  It is now July 24th and I've been pain free for a month and a half.  Was it the D3 regime?  Was it Prednizone, verapamil and depakote?  Or did my cycle simply run it's course?  I really don't know, but I greatly appreciate the help and support of everyone on this forum.  So I want to say thanks again to Batch and everyone.  When I was down, you really supported me.
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