Is it Possible to be D3 Resistant?

[BoscoPiko]

I know this sounds all kinds of silly, but I've been on the D3 reg for a bit now, along with all the co-factors. I messed up up the first loading schedule by accidentally cutting it 2 days short so I re-loaded for a few more. The D3 has helped in the way of lessening the severity of the pain when I get hit from a 10 to a 7 or so. I understand that the CH is constantly morphinhg and evolving and maybe that's what's happening this time just seems odd as I've only had this a few years.. I am on 480 mg of verapamil as a preventative (was at 600) but it was causing me heart palpitations so I backed down, also still taking 200 mg of the dreaded Topamax because I'm 2 scared to stop at the moment. I also take Coq10 800mg, riboflavin, vitamin C and recently started quercetin (not sure I spelled that correctly). I got hit 3 times so hard today that all I can think is that maybe my body is not absorbing the D. I even resorted to using the drops as I thought that would help with absorbing. I was unable to abort with o2 so had to use the nasty sumatriptian nasal and it only worked for 30 minutes.  I'm just at a loss? On month 3 with only a week in between breaks... Just wondering if it's possible to need absurd levels of the D3?

[Bejeeber]

So sorry to hear of the continuing preventive fail . And when Sumatriptan nasal fails to provide a lasting abort I know that's the mark of a seriously heavy hit. 

I'm guessing that having your D3 level tested could provide some useful info here, and apparently it's possible to get such testing/results with some kind of home kit, not having to go through a doctor, but certainly the daddy of the D3 regimen, @xxx, would have the clearest insight on this, hence my attempt to send out the bat signal with wanton inclusion  of @xxx in this post. 

 

[xxx]

Hey Bejeeber, Got the Bat Signal.  Thanks. 

BP, Grassrootshealth has the home bloodspot test kit for 25(OH)D3 at the following link for $79:  https://daction.grassrootshealth.net/product/vitamin-d-home-test-kit/

That said, you still need labs for your serum calcium and PTH.  Grassrootshealth doesn't have home test kits for these two analytes.  You need all three labs [25(OH)D3, calcium and PTH] now so it's best to see your PCP for them at the soonest.  The rationale for these lab tests is simple.  If your serum calcium is still within its normal reference range, but not against the upper limit, and your PTH is not at the low limit of its normal reference range, you've room to maneuver with more vitamin D3 loading doses.

What's likely happening with the heavy CH hits is you're experiencing an allergic reaction to something in your environment.  Pollen, mold spores, dust mite poo, chemical pollutants and some food types are all possible allergens.  I drove through Northern CA down to Shasta then East to Reno for the Annual Navy Tailhook Reunion and Conference last weekend.  Smoke from the fires was fearsome. 

When allergic reactions happen, we need significantly larger maintenance doses so it's best to go straight to a loading dose for 3 to 5 days then drop back to a maintenance dose of 50,000 IU every 5 days (Doing the math, that works out to 10,000 IU/day) or reduce the dosing interval to every 4 days, 3 days down to 50,000 IU/day until you get the needed labs if you're still getting hit. 

There are a few things you can do at this point while waiting for labs of your serum 25(OH)D3, calcium an PTH.

1.  A first-generation antihistamine like Benadry (Diphenhydramine HCL) at 25 mg four times a day.  (You're already taking Quercetin but you can bump the dose up to a max of 3 grams/day).

2.  500 to 1000 mg/day Turmeric (Curcumin) and 500 to 1000 mg/day Resveratrol have helped some CHers. They're great anti-inflammatory agents.

3.  You should have the Nutrasal Micro D3 by now so I would take 0.5 mL (40,000 IU) of it as the maintenance dose per the maintenance schedule above and skip the Bio-Tech D3-50 capsule until you get your lab results in hand.

4.  Make sure you're drinking at least 2.5 liters of water a day.  Staying hydrated while taking higher doses of vitamin D3 is very important.

5.  Finally, there's diet.  The Atkins-Ketogenic diet has proven effective in at least two RCTs for migraines.  I would start it with a 24 Hour fast drinking only water and taking the protocol supplements.  When you've completed the fast, avoid all sugars and fruit juices.  Sugar is an inflammatory agent and fruit juices are high in fructose.  I would also avoid all wheat products for at least 30 days.  That includes grain oils like canola and corn oil.  Wheat and grain products also tend to be high in Glyphosate (RoundUp) if they're GMO.  Glyphosate is a herbicide.  It plays hell on the friendly colonies of bacteria living in your gut called the microbiome.  Good fats include organic butter, EVOO, avocado oil and my favorite, extra virgin coconut oil.  I would also avoid calcium rich foods like all dairy products.

You can eat all the free range organic meats, poultry and eggs you want.  A serving or two of wild caught salmon, halibut or Ahi tuna a week is great.  You can also eat all the organic Non GMO green and colored veggies you want.  Limit fruit to a handful a day of dark berries (blackberries, blueberries, raspberries and dark grapes).

I know all this seems like a hassle at this point, but the payoff is worth it.  Work with your PCP in a team effort with frequent labs for 25(OH)D3, calcium and PTH so you can keep loading without going bust on serum calcium.   The best indication you're getting the maximum benefit from vitamin D3 comes when your PTH reaches the low normal serum concentration and your serum calcium is still within its normal reference range.

Take care and please keep us posted.

V/R, Batch

[BoscoPiko]

9 hours ago, xxx said:

Hey Bejeeber, Got the Bat Signal.  Thanks. 

BP, Grassrootshealth has the home bloodspot test kit for 25(OH)D3 at the following link for $79:  https://daction.grassrootshealth.net/product/vitamin-d-home-test-kit/

That said, you still need labs for your serum calcium and PTH.  Grassrootshealth doesn't have home test kits for these two analytes.  You need all three labs [25(OH)D3, calcium and PTH] now so it's best to see your PCP for them at the soonest.  The rationale for these lab tests is simple.  If your serum calcium is still within its normal reference range, but not against the upper limit, and your PTH is not at the low limit of its normal reference range, you've room to maneuver with more vitamin D3 loading doses.

What's likely happening with the heavy CH hits is you're experiencing an allergic reaction to something in your environment.  Pollen, mold spores, dust mite poo, chemical pollutants and some food types are all possible allergens.  I drove through Northern CA down to Shasta then East to Reno for the Annual Navy Tailhook Reunion and Conference last weekend.  Smoke from the fires was fearsome. 

When allergic reactions happen, we need significantly larger maintenance doses so it's best to go straight to a loading dose for 3 to 5 days then drop back to a maintenance dose of 50,000 IU every 5 days (Doing the math, that works out to 10,000 IU/day) or reduce the dosing interval to every 4 days, 3 days down to 50,000 IU/day until you get the needed labs if you're still getting hit. 

There are a few things you can do at this point while waiting for labs of your serum 25(OH)D3, calcium an PTH.

1.  A first-generation antihistamine like Benadry (Diphenhydramine HCL) at 25 mg four times a day.  (You're already taking Quercetin but you can bump the dose up to a max of 3 grams/day).

2.  500 to 1000 mg/day Turmeric (Curcumin) and 500 to 1000 mg/day Resveratrol have helped some CHers. They're great anti-inflammatory agents.

3.  You should have the Nutrasal Micro D3 by now so I would take 0.5 mL (40,000 IU) of it as the maintenance dose per the maintenance schedule above and skip the Bio-Tech D3-50 capsule until you get your lab results in hand.

4.  Make sure you're drinking at least 2.5 liters of water a day.  Staying hydrated while taking higher doses of vitamin D3 is very important.

5.  Finally, there's diet.  The Atkins-Ketogenic diet has proven effective in at least two RCTs for migraines.  I would start it with a 24 Hour fast drinking only water and taking the protocol supplements.  When you've completed the fast, avoid all sugars and fruit juices.  Sugar is an inflammatory agent and fruit juices are high in fructose.  I would also avoid all wheat products for at least 30 days.  That includes grain oils like canola and corn oil.  Wheat and grain products also tend to be high in Glyphosate (RoundUp) if they're GMO.  Glyphosate is a herbicide.  It plays hell on the friendly colonies of bacteria living in your gut called the microbiome.  Good fats include organic butter, EVOO, avocado oil and my favorite, extra virgin coconut oil.  I would also avoid calcium rich foods like all dairy products.

You can eat all the free range organic meats, poultry and eggs you want.  A serving or two of wild caught salmon, halibut or Ahi tuna a week is great.  You can also eat all the organic Non GMO green and colored veggies you want.  Limit fruit to a handful a day of dark berries (blackberries, blueberries, raspberries and dark grapes).

I know all this seems like a hassle at this point, but the payoff is worth it.  Work with your PCP in a team effort with frequent labs for 25(OH)D3, calcium and PTH so you can keep loading without going bust on serum calcium.   The best indication you're getting the maximum benefit from vitamin D3 comes when your PTH reaches the low normal serum concentration and your serum calcium is still within its normal reference range.

Take care and please keep us posted.

V/R, Batch

Thank you so much Batch! I'm on it! I should have my D3 results any day now from grass roots, they emailed me and said they were sent to the lab on the 7th and that it takes 10 days from then. I am somewhat on Keto but not that hard core so I'll step it up and yes the fire has been a bad issue. I'll print this out or copy and paste it and follow the protocol. Thank you so much for all the details!!

[BoscoPiko]

Well shoot,

Guess I am not resistant...

Email from Grassroots...

Dear Rachel,

Your Vitamin D serum level based on your recent test with us is 100 ng/ml or higher. We do not currently have any data to support any additional health benefit of having a level of 100 ng/ml or above. The recommended serum level range, per our Scientists' Call to Action, is 40-60 ng/ml (100-150 nmol/L) for best overall health.

It is important to note that vitamin D related toxicity has been observed at levels of 200 ng/ml (500 nmol/L) and higher per J. Hathcock, Am J. Clin Nutr. 2007;85:6-18.

You may choose to consult with your health care provider to discuss your results.

Thank you for your participation in the D*action project!

Sunnily Yours,

Carole A Baggerly, Director
GrassrootsHealth
A Public Health Promotion Organization
Moving Research into Practice

 

[BoscoPiko]

Square one.    

[Bejeeber]

[spiny]

Bosco, I didn't see where you are taking the Vit K. Am I missing something?

You have dang high D3 levels. So, that does need to come down. I'm sure that @xxx will check back in soon and provide info there. 

My first cycle starting the D3 it lowered the intensity of my hits and lengthened the ramp up time a bit, so I could hit the O2 earlier. I did not get to PF status that year. The next year, after staying on the D Regimen for the year, I had no cycle. Fluke? Hmm. Leave off the vitamins for 2-3 days and there came the hits! Back onto the regimen I went. Cycle went away 2 days later. Time came for the next cycle, no cycle. Did I test that one too? Oh yes I did. I wanted to be sure it was the regimen, not just a missing cycle.  So, don't loose hope on it! I still test it every year too. The wonder of 'aging out' has NOT occurred. 

Is your Verap ER or SA? The short acting works better for CH than the extended release for some dumb reason. It does mean taking them 3 times a day, but hey, help is help, right?  Have you tried taking Benadryl yet? I don't recall. It helps me a good bit with allergy inflammation and the head. 

I understand your reluctance to abandon the Dopamax, since you feel that it is helping. 

This is rather heart breaking at the moment, but answers will be found I bet. Please be sure to take in adequate good fat on Keto! It is what your body will be running on.

[BoscoPiko]

7 hours ago, spiny said:

Bosco, I didn't see where you are taking the Vit K. Am I missing something?

You have dang high D3 levels. So, that does need to come down. I'm sure that @xxx will check back in soon and provide info there. 

My first cycle starting the D3 it lowered the intensity of my hits and lengthened the ramp up time a bit, so I could hit the O2 earlier. I did not get to PF status that year. The next year, after staying on the D Regimen for the year, I had no cycle. Fluke? Hmm. Leave off the vitamins for 2-3 days and there came the hits! Back onto the regimen I went. Cycle went away 2 days later. Time came for the next cycle, no cycle. Did I test that one too? Oh yes I did. I wanted to be sure it was the regimen, not just a missing cycle.  So, don't loose hope on it! I still test it every year too. The wonder of 'aging out' has NOT occurred. 

Is your Verap ER or SA? The short acting works better for CH than the extended release for some dumb reason. It does mean taking them 3 times a day, but hey, help is help, right?  Have you tried taking Benadryl yet? I don't recall. It helps me a good bit with allergy inflammation and the head. 

I understand your reluctance to abandon the Dopamax, since you feel that it is helping. 

This is rather heart breaking at the moment, but answers will be found I bet. Please be sure to take in adequate good fat on Keto! It is what your body will be running on.

I did talk to ××× and it turns out that it's not all gloom. I am taking vitamin k and all other Co factors I can't take benadryl as oddly enough I'm allergic to  it... I am taking quercetin instead. My verapamil is the ER and I do often think of weenie off the toprimax as no one likes constantly double typing words etc...I need to get more labs done for calcium levels etc.. I'm going full keto and drinking tons of water to flush the extra D out for now ..

[BoscoPiko]

2 hours ago, spiny said:

Bosco, I didn't see where you are taking the Vit K. Am I missing something?

You have dang high D3 levels. So, that does need to come down. I'm sure that @xxx will check back in soon and provide info there. 

My first cycle starting the D3 it lowered the intensity of my hits and lengthened the ramp up time a bit, so I could hit the O2 earlier. I did not get to PF status that year. The next year, after staying on the D Regimen for the year, I had no cycle. Fluke? Hmm. Leave off the vitamins for 2-3 days and there came the hits! Back onto the regimen I went. Cycle went away 2 days later. Time came for the next cycle, no cycle. Did I test that one too? Oh yes I did. I wanted to be sure it was the regimen, not just a missing cycle.  So, don't loose hope on it! I still test it every year too. The wonder of 'aging out' has NOT occurred. 

Is your Verap ER or SA? The short acting works better for CH than the extended release for some dumb reason. It does mean taking them 3 times a day, but hey, help is help, right?  Have you tried taking Benadryl yet? I don't recall. It helps me a good bit with allergy inflammation and the head. 

I understand your reluctance to abandon the Dopamax, since you feel that it is helping. 

This is rather heart breaking at the moment, but answers will be found I bet. Please be sure to take in adequate good fat on Keto! It is what your body will be running on.

Also... Thank you Spiny!!

[jon019]

1 hour ago, BoscoPiko said:

 My verapamil is the ER....

...to second what Spiny said. ER verap was totally useless for me at any dosage. many report similar. the pharmacy subbed it in for SA one time and panic ensued as "it doesn't work any more!". my dosage needed for low cycle was 480,  960+ for high cycle. found that timing doses to expected hit times was somewhat helpful.

...Topamax was useless and just made me dumb......some folks have reported that taking before bed reduces side effects during day and side effects lessen over time. 

[BoscoPiko]

1 hour ago, jon019 said:

...to second what Spiny said. ER verap was totally useless for me at any dosage. many report similar. the pharmacy subbed it in for SA one time and panic ensued as "it doesn't work any more!". my dosage needed for low cycle was 480,  960+ for high cycle. found that timing doses to expected hit times was somewhat helpful.

...Topamax was useless and just made me dumb......some folks have reported that taking before bed reduces side effects during day and side effects lessen over time. 

Would make sense as I have no evidence that it has ever kept me from a cycle, I do however believe it has cut down the amount of bangers per cycle. No real proof just speculation at this point. I've been desperate a few times an upped the verapamil while in cycle and it has never helped so maybe I need to talk to my neurologist about switching. I have a bad habit of holding on to fear, hence I have not let the stupid Topamax go. I am sure many have noticed my double words (one of my worst side effects from it) even when I go back and try and catch them, they slip by me. I suppose it's time to ween off the dummy drug... Thanks John

[jon019]

10 minutes ago, BoscoPiko said:

Would make sense as I have no evidence that it has ever kept me from a cycle, I do however believe it has cut down the amount of bangers per cycle.

...ditto...for me 70 percent reduction in hits and intensity (of some hits)... Oxygen/energy drinks for the blow bys. Zomig ns absolute last resort. Weened off when I got tired of always being tired

Edited September 23, 2021 by jon019

[Bejeeber]

Glad to see you're at least getting some truly stellar advice @BoscoPiko, and I know a lot of us fully endorse this sentiment:

5 hours ago, spiny said:

This is rather heart breaking at the moment, but answers will be found I bet.

And this is about as chock full of irony as it gets  :

3 hours ago, BoscoPiko said:

I can't take benadryl as oddly enough I'm allergic to it

 

[BoscoPiko]

44 minutes ago, Bejeeber said:

Glad to see you're at least getting some truly stellar advice @BoscoPiko, and I know a lot of us fully endorse this sentiment:

And this is about as chock full of irony as it gets  :

 

I know!

[BoscoPiko]

Yes indeed, I have received so much helpful advice and information on here. I feel bad for any cluster head that has not found this site...Thank you all for putting up with me

[spiny]

Ok. I have to ask, is  Bosco an Abyssinian? Appears to be at least partly, if not full!! So pretty.  I lost my Tonkinese last September. Age 20!

If you can bring yourself to ditch the Dopamax, I think that you will feel better. One thing comes to mind: Is It stopping the hits? NO? Then perhaps it is not for you. Many of us come to that realization after suffering for too long with a medication we thought was helping. 

I have tried some things for too long thinking 'Well, it is not as bad as it was.' But did I really know that? Nope. Verap worked for me, until I went off one summer due to prodding from my dentist. Guess what? It never worked again!! I could only take 240mg/day due to low BP. So, upping it was not a option for me. As angry as I was , I later figured out that it would have soon failed anyway. And I felt like garbage. I was truly better off in the end without it.

Well, we aren't 'putting up with you', we have all been there and understand you and where you are!! Not the average person you meet on the street in that one respect. CH family. 

 

  

[jon019]

...my favorite online clusterhead sayings:

 

..."take what ya need and leave the rest"...

...."if you're not sure if the med is working...it's NOT!"

...."fuckit".....

[spiny]

[BoscoPiko]

48 minutes ago, spiny said:

Ok. I have to ask, is  Bosco an Abyssinian? Appears to be at least partly, if not full!! So pretty.  I lost my Tonkinese last September. Age 20!

If you can bring yourself to ditch the Dopamax, I think that you will feel better. One thing comes to mind: Is It stopping the hits? NO? Then perhaps it is not for you. Many of us come to that realization after suffering for too long with a medication we thought was helping. 

I have tried some things for too long thinking 'Well, it is not as bad as it was.' But did I really know that? Nope. Verap worked for me, until I went off one summer due to prodding from my dentist. Guess what? It never worked again!! I could only take 240mg/day due to low BP. So, upping it was not a option for me. As angry as I was , I later figured out that it would have soon failed anyway. And I felt like garbage. I was truly better off in the end without it.

Well, we aren't 'putting up with you', we have all been there and understand you and where you are!! Not the average person you meet on the street in that one respect. CH family. 

 

  

Hey Spiny Yes! Mr. Bosco is indeed an Abby. He says thank you for the compliment You are so correct (again) I already know that the Topamax is not helping so I just need to stop it already. Just caught on to why you were spelling it that way LOL. Thank you for once again being awesome! (Sorry about your kitty passing)! 20 Wow!

[BoscoPiko]

10 minutes ago, jon019 said:

...my favorite online clusterhead sayings:

 

..."take what ya need and leave the rest"...

...."if you're not sure if the med is working...it's NOT!"

...."fuckit".....

Love it!

[BoscoPiko]

On 9/23/2021 at 3:27 PM, BoscoPiko said:

Love it!

One day down. (Off the toprimax). feel like I should be on a program for whatever abusers.. no nothing new to report.  I'm happy swam in the pool and and got the 500.mg. quercertin today.. never know if I spell that correctly.. anyhow I'm trying..you folks are the best..!

[spiny]

Way to go!!!  If it isn't working............

 

[Bejeeber]

Congrats on the ditching of the Dopeymax, and on the awesomely accurate spelling of quercitin (I think). 

[spiny]

Quercetin. Those names that they tack onto meds are insane!! I get sick of looking them up all the time. And stupid spell check has NO idea and always flags them as wrong! Glare.......