Jump to content
ClusterBusters
jkan

Starting D3 regimen...

Recommended Posts

Hi,

 

I went out today and got the supplies to start my D3 regimen...I followed the table CHfather posted back in 2011. Found in the clusterbusters file forum (D3 Regimen). I got a few questions:

 

1. I could only find Vitamin A in 3,000mcg (10,000 IU)...the table says i should be taking 900mcg (3,000 IU)......is this okay if i take the higher dose? (the gel caps are really small and i can't cut them in half)

 

2. I have not yet had a lab test for my 25(OH)D..can i still start?

 

3. I did a lot of reading on the d3 dosing. I'm still a little confused if I should be doing the accelerated approach. (I've had CH for over 10 years and this is the first time i have had a running nose and little stuffy for about 2 weeks now, don't know if this matters)

 

4. I am currently on 720mg of verapamil. I take 240mg 3x a day (morning, lunch, dinner). When is the best time for me to be taking my d3? I have read that verapamil can be a blocker. 

 

 

This is my first time trying the D3 Regimen....sorry if i have a lot of questions...I have busted once before using Vitamin M few years ago. I have been on Verapamil for a few years now and I am unable to get off the verapamil. When i try to get off i get hit hard and frequently. My neuro said that might have went from episodic to chronic because i am unable to taper off the verapamil all year round. 

 

I am hoping the d3 regimen will allow me to taper off the verapamil and then i would like to get on the DALT treatment.

 

Any help is much appriectiated  I am getting attacks everyday multiple times a day.

 

thanks all!!!!

 

 

 

 

Share this post


Link to post
Share on other sites

All I was able to find in the vitamin A was 10,000 iu also, I did do the accelerated dosing for the first month as suggested, I thought I was maybe noticing results after about 3 weeks but was not sure, but after 5 weeks I felt certain that it had helped me, I had the shortest cycle in 30 years, and almost all of my attacks I was able to abort with O2.

I am continuing on with it even after the cycle has ended, I feel like I have gotten other benefits from it also.

Really hope you have the success with it I have had. Ed

Share this post


Link to post
Share on other sites

G'mornin J!

Happy to see you've started a thread this mornin!

The only question I can answer regarding starting the D3 regimen is that you can start it prior to having a level test. I think perhaps the best advice you can get is one on one with Batch so I'll email him directly and ask him to stop by today.

Also, I couldn't find mention in any of your posts regarding O2 therapy....usually one of the first things we inquire about from a new poster! Do you have Oxygen? If so and it's not working for you, how are you administering it? This is a huge issue for busting as well as being able to detox! I've seen two folks from Canada recently who were running into problems getting their docs to write scripts for high flow oxygen so wanted to make sure this isn't the case for you!

DD

Share this post


Link to post
Share on other sites

Hey J,

 

Welcome to the anti-inflammatory regimen and good questions.

 

Regarding the vitamin A... Check the lable... most vitamin A preparations are formulated with both carotinoids and retinoids...  What you're looking for is the amount of retinoid or retinoid equivalents totalling 3000 IU/day.  If the retinoid equvalent is 10,000 IU per capsule, take one capsule every three days and you should be good to go.

 

Regarding the 25(OH)D lab test, in a perfect world, I'd see my PCP or neurlogist to get this test then start the anti-inflammatory regimen...  However, if it looks like it will take more than a day or two to get the lab test, I'd start the anti-inflammatory regimen and then see your PCP or neurologist to get the lab test when it's available.  We can always work backwards using the total vitamin D3 taken to estimate your starting 25(OH)D serum concentration.  For what it's worth, the online survey of CH'ers taking this regimen indicates the average 25(OH)D serum concentration of survey participants prior to starting this regimen is around 27 ng'mL...  we need a 25(OH)D serum concentration around 80 ng/mL, (200 nmol/L) for effective CH prevention and to have a sufficient reserve 25(OH)D to deal with infections (bacterial and viral) as well as allergies as our immune system can consume vitamin D3 and its metabolites at a high rate when fighting off bad bugs, virus or allergic reactions.

 

Most medical insurance companies will not acover the expense of the lab test for serum 25(OH)D for cluster headache...  However, you can ask your doctor to order this test based on a possible osteoporosis due to taking prednisone...  This works!

 

Regarding the vitamin D3 loading schedule... The odds are your 25(OH)D serum concentration is below 30 ng/mL, (75 nmol/L) so you're going to need a vitamin D3 loading dose of at least 500,000 to 600,000 IU of vitamin D3 spread out over two weeks or four weeks.  (Both schedules are equally effective)...  There's an average gain of 10 ng/mL of 25(OH)D per 100,000 IU of vitamin D3.  This is another reason why it's a good idea to know your serum 25(OH)D concentration before starting this regimen...

 

I'll also echo Dallas Denny's suggestion to ask your PCP or neurologist for an Rx for home oxygen therapy.

 

In March of 2015, we found that allergic reactions to pollen and other allergens, can interfere with vitamin D3's capacity to prevent CH,  We also found that a first-generation antihistamine like Benadryl (Diphenhydraming) 25 mg taken twice a day can help-kick start vitamin D3's capacity to prevent CH.  Benadryl (Diphenhydramine) has the capacity to pass through the blood brain barrier to block histamine receptors on brain cells...  Second- and thrid-generation antihistamines cannot do this so are not as effective as Benadryl.

 

I keep the latest updates to the anti-inflammatory regimen as well as results from the online survey of CH'ers taking this regimen posted on page 1 of the following link: 

 

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404

 

Regarding when to take this regimen...  It's best to take every thing in this regimen including the Mature Multi (200 mg/day calcium) in the evening right after the largest meal of the day.  This does two things... I helps avoid an upset tummy from the magnesium or Omega-3 fish oil, and it helps ensure maximum absorption...

 

Regarding when to dose with verapamil, a calcium chanel blocker, it's best to take it at least 12 hours away from any calcium supplements.  As a side note, the verapamil isn't likely working very well as a preventative or you wouldn't be starting the anti-inflammatory regimen... Most CH'ers who find the anti-inflammatory regimen prevents their CH usually work with their PCP or neurologist to taper off verapamil for good...

 

Finally, nearly every CH who starts this regimen wants to know how long it will take to experience its preventative effects...  The following chart from the online survey provides some good answers.

 

FavorableResponseByDay_zpsjvz7xypb.jpg

 

As you can see, the majority of CH'ers have responded by the 10th day...  We think adding the Benadryl (Diphenhydramine) can help the CH'ers who would have taken longer to respond to this regimen as well as the 19% who don't respond start experiencing relief.

 

Take care and please keep us posted...

 

V/R, Batch

Share this post


Link to post
Share on other sites

thanks DD and Batch for all this great info!!!!

 

regarding the vitamin A the label says : Vitamin A (palmitate)      (cod liver oil)......3000 mcg RAE (10,000 IU)

I don't see any reference to retinoids.

 

I will put in a request to my doctor for the lab test asap.. i started the regimen today. 

 

Sorry I'm still i little confused as to how this D3 loading works..currently i am following the schedule referenced in the D3 regimen file (Batch's table)..Can you please explain how the loading works? will i be taking more d3 on top of my regular schedule?

 

DD.. I have tried O2 in the past but my flow only got up to 7lpm...it did help a little bit but i was running out of tanks like after 2-4 attacks. I eventually stopped using it. I just recently learned from this site that i should have had a higher flow. I tried mentioning this to my neuro last week and he said the O2 will mostly delay attacks not completely stop one.....I am still open to trying the O2 and i understand i will most likely need it if I am to detox during a cycle..i just need to figure out exactly what tanks and masks i am to ask for because I don't think my GP has a clue.

 

I will start taking my dose with dinner...should i still be taking my verapamil morn / noon / evening. I can't remember the last time i went 12 hours without taking verapamil. I would prefer to take my verapamil on the same schedule i am currently on and slowly taper off...let me know what you think, from you experience

 

I read some of your comments Batch regarding sun exposer. For the last few years my cycles have started as soon as summer is over. My migraines will start late Sept early Oct and stick around into the new year. I find during the summers i rarely get an attack, I have gone a few months without a migraine in the summer, but i am unable to get off the verapamil all year around. 

 

Maybe i have to move somewhere where its summer all year around  :)

 

thanks again for all the help! 

Share this post


Link to post
Share on other sites

G'mornin morning J

Damn! I was afraid this was gonna be your answer concerning O2 bud and sorry I was remiss in not asking before now!

High flow oxygen will CHANGE your life with regard to CH!! Your doc is completely full of shit! I can routinely abort a hit in 5 to 8 minutes with O2....it won't prevent the next attack but I can get up with a hit, abort, and back to bed sleeping in 15 to 20 minutes!

So, there's 2 routes to getting O2...doctors script for medical O2 or setting up your own welding oxygen rig.

..for medical the doc needs to write you a script for "oxygen at 15 to 25 lpm, PRN for cluster headaches delivered via a non rebreather mask".....and you need to order an optiO2mask from the clusterheadaches.com store (less than $30)...made specifically for clusterheads!

You'll need an M sized tank (4 1/2' tall and about 10" diameter) for home use and some E tanks for mobile use.

If you have problems getting the scripts let me know and I'll fill you in on the weld ox setup....that's what I've personally been using for the last 6 years.

I see Pete (Batch) dropped in with some info and that you still had some questions....I expect he'll keep an eye on your thread but if he doesn't respond to your questions today, I'll get another message out to him.

DD

Share this post


Link to post
Share on other sites

Hi J!

 

Verapamil tapering probably should be started after you get your O2 and feel some response to D3.

 

As a nocturnal ECHer, I started by deleting part of the am dose. Then about 3-4 days later dropped another pill. You need to monitor your BP while doing this. Some CHers have found that they cannot ditch the verap completely due to increased BP reading. For me, it allowed my BP to return to normal rather than running uncomfortably low. Those little BP cuffs at the pharmacy are handy for this. If your hits are mostly daytime, I would drop a pm pill for starters.

 

As for the O2 delaying not killing an attack, that is often because the O2 is not being used correctly. You need to do post hit normal breathing for a few minutes after the hit is gone. My neuro told me the same thing and I told him that they were having issues because they did not know hot to use O2 correctly. Then I set up my welding O2.

 

spiny

Share this post


Link to post
Share on other sites

DD,

 

I will start by asking my doctor for a prescription as you described and buy the mask online. thanks again!

 

Spiny,

 

I agree I will start tapering off the verapamil after I have my o2 and feel some response to D3. I usually get my attacks in the afternoon or evening. I used to get woken up to attacks few years back but not since I started the verapamil. When the time Is right I think I will start my tapering off my evening dose and go from there.

 

this might be a dumb question but what it "BP"???

 

THANKS AGAIN FOR ALL THIS GREAT INFO!!

Share this post


Link to post
Share on other sites

Hey J,

 

Good questions...  Your vitamin A is full strength Retinyl palmitate, or vitamin A palmitate, an ester of retinol (vitamin A) and palmitic acid.  Take one capsule every three days...

 

Good move on starting the anti-inflammatory regimen and calling your PCP for the 25(OH)D lab test.  Don't take "No" for an answer...  Remember to tell your PCP you're concerned about osteoporosis from the prednisone when you ask for the 25(OH)D lab test.

 

Regarding the two vitamin D3 loading schedules listed below... Take either loading schedule and when you've completed it, then go back to the maintenance dose of vitamin D3 plus the vitamin D3 cofactors and Omega-3 fish oil.

 

Two-Week Vitamin D3 Loading Schedule

Week 1.  50,000 IU/day vitamin D3 for one week.  Take all the other supplements

Week 2.  40,000 IU/day vitamin D3 for six (6) days then drop the vitamin D3 dose to 10,000 IU/day on the 7th day.  This will be the normal maintenance dose of vitamin D3.  Again, take all the other supplements.    

 

Four-Week Vitamin D3 Loading Schedule

Week 1.  20,000 IU/day vitamin D3 plus one (1) loading dose of 50,000 IU vitamin D3

Week 2.  20,000 IU/day vitamin D3 plus one (1) loading dose of 50,000 IU vitamin D3

Week 3.  15,000 IU/day vitamin D3 and no loading dose

Week 4.  15,000 IU/day vitamin D3 and no loading dose

Take all the other supplements and cofactors each day.  At the end of the 4th week, drop the vitamin D3 dose to 10,000 IU/day plus the other supplements and cofactors.

 

These two vitamin D3 loading schedules are equally effective and should result in a rapid 25(OH)D response to therapeutic concentrations near 80 ng/mL with a significant reduction in the frequency, severity and duration of CH faster than at the maintenance dose 10,000 IU/day vitamin D3.  The 2-week schedule is faster. 

 

The target serum concentration for 25(OH)D is 80 ng/mL so the total loading dose can be adjusted at the rate of 100,000 IU vitamin D3 per 10 ng/mL of 25(OH)D response.  Vitamin D3 is lipophilic so adjustments can also be made for BMI.  Accordingly, if the BMI is <18.5, subtract 100,000 IU from the total loading dose.  If the BMI is ≥ 25, add 100,000 to the total loading dose.

 

Lab tests for serum 25(OH)D, calcium and PTH should be conducted at the completion of either loading schedules.  Results should indicate a 60 ng/mL gain above the 25(OH)D baseline/starting serum concentration.   Another set of lab test of serum 25(OH)D, calcium and PTH should be conducted three months after completion of either loading schedule while on the maintenance dose.  This should provide sufficient time for the 25(OH)D response to the maintenance dose of vitamin D3 to reach a stable equilibrium.  Adjustments to the vitamin D3 maintenance dose can be made at this time to maintain a target 25(OH)D serum concentration of 80 ng/mL, (200 nmol/L).  Routine follow up lab tests for 25(OHH)D should be done on a six month or yearly basis.

 

Regarding oxygen therapy...  An oxygen flow rate of 7 to 9 liter/minute with a non-rebreathing oxygen mask does not provide sufficient lung ventilation to abort a cluster headache.  In this case, you may be getting sufficien oxygen but the low lung ventilation is not sufficient to remove excess CO2 which will build up.  Excess CO2 triggers vasodilation and that makes CH even worse and more painful.  In order to avoid this problem, the oxygen flow rate needs to be a minimum of 15 liters/minute or better yet, 25 liters/minute.  If you really want a rapid CH abort with oxygen therapy, you need an oxygen flow rate of 40 liters/minute.

 

Fortunately, there's an alternative method of oxygen therapy that will work with lower oxygen flow rates.  It essentially requires hyperventilating at forced vital capacity tidal volumes with room air for 30 seconds followed by inhaling a lungfull of 100% oxygen and holding it for 30 seconds.  You keep repeating this sequence until the CH pain is completely gone.

 

The complete instructions for this method of oxygen therapy and breathing techniques can be found at the following link:

 

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1415811734/2/#2

 

Take care and please keep us posted.

 

V/R, Batch

Share this post


Link to post
Share on other sites

Hey J,

 

Regarding sun exposure while taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3...  Unless you're running around in a bathing suit in mid-day sun without any sun block for at least 15 minutes a day... you're not getting sufficient exposure to the UB-B in direct sunlight to build up any cutaneous vitamin D3...

 

Regarding your verapamil intake... If you take the verapamil in the morning, noon and in the evening, the first two doses will be uneffected by the 220 mg of calcium in the Mature Multi taken immediately after the evening meal..  The evening dose of verapamil may be less effective (if verapamil was effective at all in preventing your CH).  My guess is the anti-inflammatory regimen will more than compensate for any possible loss of verapamil effectiveness.

 

Take care and please keep us posted.

 

V/R, Batch

Share this post


Link to post
Share on other sites

thanks!

 

I think i will go with the 2 week loading schedule... If I'm getting this right my D3 pills are 1000UI each pill...so i will be taking 50 pills a day for 7 days then 40 pills for 6 days then back down to 10pills?????(and the other vitamins each day) Im just confirming cause thats ALOT of pills.

 

Do i have to take all the vitamins at the same time??

 

I will be meeting my doctor next Friday and plan on getting my o2 and tests done. 

 

thanks again for all this information. I have learned a shit load of stuff. 

 

I will keep you all posted.

Share this post


Link to post
Share on other sites

Hey,

 

I just wanted to give an update....So I started the D3 regimen 6 days ago (Oct 29th) the first two days I took 10,000 IU of d3 along with the other vitamins. On day 3 I started the loading dose at 50,0000 IU w/ other vitamins. I have not had a attack since, just two shadows which I fought off with drinking water and using ice. I got my 25(OH)D test on Sunday Nov/1. The test results were 91 nmol/L. 

 

I cant thank all of you enough for all the input. I know this isn't the end but it is a HUGE improvement.

 

I haven't taking any zomaig or imitrex for 3 days so far, I am on my 4th. I also took my verapamil down from 720mg to 600mg per day. I will take it down to 480mg tomorrow.

 

As for the O2 I am meeting my doctor this Friday regarding the options you guys provided.

 

I should be receiving my DALT any day now and look forward to starting that process.

 

thanks again! all of you!!!

Share this post


Link to post
Share on other sites

Outstanding, so glad for you. Just remember if the doctor does not want to comply with what is needed for the proper oxygen set up you can go the way of welding supply for O2, we will help walk you through the set up. The proper O2 set up is the best weapon for fighting attacks.

Share this post


Link to post
Share on other sites

Hey All,

 

I just wanted to check-in and give an update. It has been 3 months NO attacks. Back in November i tried to reduce my verapamil too fast and had some attacks. I have been on the D3 reg since November and i am down to 480mg verapamil a day compared to 720mg i was on for almost a year.

 

I had 3 doses of DALT, but i was still on the verapamil so i dont know if the DALT helped or if it was the D3 reg.

 

Either way it has been a great start to the year and thanks to all of you for your help. 

 

I plan on getting my verapamil down even more and hopefully completely off. I will also try a few doses of Vit M and/or DALT when i am off the verapamil to keep this painfree train going strong.

 

THANKS AGAIN!!

Share this post


Link to post
Share on other sites

Hey J,

 

Welcome to the anti-inflammatory regimen and good questions.

 

Regarding the vitamin A... Check the lable... most vitamin A preparations are formulated with both carotinoids and retinoids...  What you're looking for is the amount of retinoid or retinoid equivalents totalling 3000 IU/day.  If the retinoid equvalent is 10,000 IU per capsule, take one capsule every three days and you should be good to go.

 

Regarding the 25(OH)D lab test, in a perfect world, I'd see my PCP or neurlogist to get this test then start the anti-inflammatory regimen...  However, if it looks like it will take more than a day or two to get the lab test, I'd start the anti-inflammatory regimen and then see your PCP or neurologist to get the lab test when it's available.  We can always work backwards using the total vitamin D3 taken to estimate your starting 25(OH)D serum concentration.  For what it's worth, the online survey of CH'ers taking this regimen indicates the average 25(OH)D serum concentration of survey participants prior to starting this regimen is around 27 ng'mL...  we need a 25(OH)D serum concentration around 80 ng/mL, (200 nmol/L) for effective CH prevention and to have a sufficient reserve 25(OH)D to deal with infections (bacterial and viral) as well as allergies as our immune system can consume vitamin D3 and its metabolites at a high rate when fighting off bad bugs, virus or allergic reactions.

 

Most medical insurance companies will not acover the expense of the lab test for serum 25(OH)D for cluster headache...  However, you can ask your doctor to order this test based on a possible osteoporosis due to taking prednisone...  This works!

 

Regarding the vitamin D3 loading schedule... The odds are your 25(OH)D serum concentration is below 30 ng/mL, (75 nmol/L) so you're going to need a vitamin D3 loading dose of at least 500,000 to 600,000 IU of vitamin D3 spread out over two weeks or four weeks.  (Both schedules are equally effective)...  There's an average gain of 10 ng/mL of 25(OH)D per 100,000 IU of vitamin D3.  This is another reason why it's a good idea to know your serum 25(OH)D concentration before starting this regimen...

 

I'll also echo Dallas Denny's suggestion to ask your PCP or neurologist for an Rx for home oxygen therapy.

 

In March of 2015, we found that allergic reactions to pollen and other allergens, can interfere with vitamin D3's capacity to prevent CH,  We also found that a first-generation antihistamine like Benadryl (Diphenhydraming) 25 mg taken twice a day can help-kick start vitamin D3's capacity to prevent CH.  Benadryl (Diphenhydramine) has the capacity to pass through the blood brain barrier to block histamine receptors on brain cells...  Second- and thrid-generation antihistamines cannot do this so are not as effective as Benadryl.

 

I keep the latest updates to the anti-inflammatory regimen as well as results from the online survey of CH'ers taking this regimen posted on page 1 of the following link: 

 

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404

 

Regarding when to take this regimen...  It's best to take every thing in this regimen including the Mature Multi (200 mg/day calcium) in the evening right after the largest meal of the day.  This does two things... I helps avoid an upset tummy from the magnesium or Omega-3 fish oil, and it helps ensure maximum absorption...

 

Regarding when to dose with verapamil, a calcium chanel blocker, it's best to take it at least 12 hours away from any calcium supplements.  As a side note, the verapamil isn't likely working very well as a preventative or you wouldn't be starting the anti-inflammatory regimen... Most CH'ers who find the anti-inflammatory regimen prevents their CH usually work with their PCP or neurologist to taper off verapamil for good...

 

Finally, nearly every CH who starts this regimen wants to know how long it will take to experience its preventative effects...  The following chart from the online survey provides some good answers.

 

FavorableResponseByDay_zpsjvz7xypb.jpg

 

As you can see, the majority of CH'ers have responded by the 10th day...  We think adding the Benadryl (Diphenhydramine) can help the CH'ers who would have taken longer to respond to this regimen as well as the 19% who don't respond start experiencing relief.

 

Take care and please keep us posted...

 

V/R, Batch

Thank you for this Batch.

I followed your D3 regimen several years ago, as I was seemingly moving from episode to chronic. It changed my life- gave me 2 plus years without so much as a shadow.

Then, for reasons I don't know, they returned in the fall of 15. I have since moved from Michigan to florida and they are now the worst they ever were. I have been wondering if the pollen levels here were a cause?

I am going to now try the Benadryl twice a day with the d3 to see if it works.

Mike

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×