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Rudolph

Vitamin d regime - side effects?

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Hi all,

I have never posted before so just a bit of background about me, I have had episodic cluster headaches for 27 years now since I was 18. They usually come in August time in the UK and last 8 weeks, so I’m due pretty soon. Unusually I did have an episode in November last year after a 3 year break from them that I believe was down to taking MM. I am now trying the vitamin D regime as I do struggle to get hold of MM. I don’t take any other medication for CH.

So, I’ve been taking loading doses over the last few weeks, my levels have historically been around 50-60 nmol/L. I have just had the results of a blood test and they are up to 152nmol/L . I have been taking vitamin K and magnesium and the other supplements recommended.

I was taking doctors best vitamin D gel caps every day until about three weeks ago and a low dose of calcium (I kept forgetting to take it). Then I changed to the 50,000 IU vitamin D tablets once a week and the mature multi vitamin which has a much higher calcium level.

However, Last Sunday I woke up with a swollen knuckle joint which is still quite bad and not going away and this is really worrying me. I have never had joint issues like this before and it has come on very suddenly. My doctor refused to give me a parathyroid test but did do a calcium test which was 2.51 mmol/L when my previous levels were always around 2.30 mmol/L. I am looking into getting a parathyroid test privately but it’s tricky to organize at the moment.

So my questions are:

1-     Is 152 nmol/L vitamin D high enough to stop the clusters? Has anyone else had success with levels this high or should I keep loading?

2-     Do you think the swelling in my hand is to do with taking too much calcium, too much vitamin D or something else? Has anyone else experienced this side effect of the vitamin D regime?

I’d be grateful for anyone’s insight into this as I’m worried about carrying on with all these supplements and causing ongoing joint issues. Sorry for the long post.

Many thanks

Tess

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Batch says that the average nmol/L for people who have been highly successful with D3 is 203.5, but the minimum that some successful people have had is around 85 nmol/L.  That's a big range, but you seem to be in the ballpark.  https://clusterbusters.org/forums/topic/1308-d3-regimen/

You should send Batch a message about the swollen knuckle.  He is very generous about responding.  His handle here is now xxx.  So, click on the envelope icon on the top right side of the page, then put xxx in the "To" line.

When you say you don't take any other medication for your CH, does that include not having oxygen?

Many people who have a hard time sourcing MM use rivea corymbosa (RC) seeds.  I think I might have read that they are now unlawful in the UK, but I feel like people were still finding ways of getting them. 

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Hi CHfather, thank you so much for replying. That sounds like I'm on the right track with the Vitamn D levels. Maybe I'll just maintain this level and see how it goes. I do have oxygen provided by the NHS fortunately and that is all I have been using for the headaches if I haven't managed to stop them with MM. My last two episodes were unrelenting though, especially at night time leaving me hardly able to function in the day. Having two kids to look after as well as work, CH is getting harder to cope with as I get older, although I'm fortunate to be episodic and I know many people have it a lot worse. I will try and contact Batch and will look into the RC seeds, thank you again.

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Hey Rudolph,

I'm also in the UK. Welcome to the forum, sorry you have to be here. 

You can still get RC Seeds in the UK from eBay and sometimes Amazon. But it's getting harder to find. We need more law makers, or any law makers, with cluster headaches if you ask me. 

The only side affect I've ever had from the VitD Regimen is that it turns my urine to acid when I pee, which isn't at all fun. But my body can be quite sensitive to high doses of vitamin D. I'm just weird that way. I would be surprised that calcium would have that sort of an impact on an adult. How long has the knuckle been swollen for?

Mox

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Hi Mox

Thanks for your message. That's good to know the RC seeds are available. Do you keep your Vitamin D levels up? Have you been doing it a long time? Does is stop CH for you? Sorry for the questions, I'm so keen for this to work. 

The swelling came on suddenly last Sunday, which is the day after I took the weekly 50k IU vitamin D tablet. It may be nothing to do with the regime and I'm just getting arthritis in my old age, but seems coincidental. I will swap back to the 10k IU a day gel caps I think as maybe that will be easier for my body to handle.

Tess

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Posted (edited)

Hey Rudolf,

Good questions.  For starters, the following chart comes from the online survey of 313 CHers taking this regimen of which 257 (82%) experienced a favorable response in the first 30 days.   The favorable response was a significant reduction in the frequency of their CH from 21 CH/week down to 3 to 4 CH/week as illustrated the normal distribution and cumulative probability curves for their 25(OH)D3 serum concentrations measured ≥30 days after start of regimen.

6pCJkDY.jpg

As you can see, the mean 25(OH)D3 response is 80 ng/mL (200 nmol/L) with a min at 30 ng/mL (75 nmol/L) and max at 175 ng/mL (437 nmol/L).  The blue S-shaped sigmoid cumulative probability plot illustrates the therapeutic response range as a probability. 

Ordinarily, I would shoot for a 25(OH)D3 serum concentration between 200 and 250 nmol/L (80 to 100 ng/mL) to ensure a higher probability of a favorable response.  However, as you were unable to get a PTH lab, your serum calcium concentration is up against the normal reference range upper limit bump stop, you're not in a CH cycle and you're experiencing joint pain, I would hold off on any further loading doses and drop back to a vitamin D3 maintenance dose of 50,000 IU/week along with all the cofactors.  After you've been on the vitamin D3 maintenance dose for a week to 10 days, do try to press your PCP/GP for a complete set of labs for your serum 25(OH)D3, calcium and PTH all at the same time.  This is the only good way of assessing normal calcium homeostasis.

Are you taking at least 400 mg/day magnesium and the vitamin K2 complex?  The vitamin K2 complex menaquinones, MK4 and MK7 have the capacity to reduce calcium accumulation in soft tissues, joints and arteries while serving as a catalyst in building bone mineral density.  If you're not taking the K2, I would start it as soon as you can get some.  I take the LEF Super K with advanced K2 complex as it has both MK4 and MK7.

If you haven't already done so, I would add Turmeric (Curcumin) at 1000 mg/day, 1000 to 2000 mg/day Omega-3 fish oil, and 3 grams/day liposomal vitamin C (1 gram every 3 hours).  Curcumin and the Omega-3 fatty acids are anti-inflammatories so should help with the sore knuckle.  Vitamin C is essential as the human genome lost the gene that expresses the enzyme needed to synthesize vitamin C from simple carbohydrates.  Vitamin C is essential in synthesizing collagen needed by cells throughout the body including the cartilage in joints.  It's also a potent antioxidant that supports hundreds of enzymatic reactions.

Regarding the swollen knuckle, I've not seen this as a side effect from vitamin D3 therapy or taking the entire anti-inflammatory regimen in the 9+ years I've been tracking results reported by thousands of CHers taking this regimen.  In most cases, vitamin D3 and Omega-3 fish oil would tend to reduce inflammation like this, hence the anti-inflammatory name I gave this regimen.  That said, anything is possible.  The Kirkland Adult 50+ Mature Multi is formulated with 220 mg of calcium here in the US.  It may be different in formulations available in the UK and Europe. 

For reference, I'm a chronic CHer so have taken this regimen daily since I developed it in October of 2010.  I've been essentially CH pain free the entire time and I keep my serum 25(OH)D3 above 100 ng/mL (250 nmol/L) all the time.  My PCP is okay with this as long as my serum calcium remains within its normal reference range.  I switched to the Bio-Tech D3-50 50,000 IU water soluble form of vitamin D3 in 2018 and have been taking one D3-50/week since January of 2019. 

hVz4sJb.jpg

The 3-year chart of my labs for 25(OH)D3, calcium and PTH illustrates both the safety of vitamin D3 at higher doses as well as normal calcium homeostasis.  That is illustrated by the inverse relationship between serum calcium and PTH.  As the calcium serum concentration goes up, the PTH serum concentration drops.  This keeps serum calcium within its normal reference range by pulling less calcium from the gut.

Take care and please keep us posted.

V/R, Batch

Edited by xxx
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...when episodic most of my cycles were eerily consistent...same number, intensity and timing. but on occasion, would get the "one hour wake-ups" all night long ...very odd change in a remarkably consistent pattern. it had to be an outside influence that i only figured out yrs later (greatly influenced by Batch's thoughts)...musta been allergies...

...would suggest a trial of Benadryl (diphenhydramine)....an old style anti histamine that works much better for clusterheads than the newer versions...do a search here for Batch and benadryl for dosage advice and a way better explanation....

....for reasons i am unaware of O2 worked every time within mins for these wake ups...wasn't always the case "normally" ...where O2 was 75-90% effective..

best

jonathan

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50 minutes ago, xxx said:

Ordinarily, I would shoot for a 25(OH)D3 serum concentration between 200 and 250 nmol/L (80 to 100 ng/mL) to ensure a higher probability of a favorable response.  However, as you were unable to get a PTH lab, your serum calcium concentration is up against the normal reference range upper limit bump stop, you're not in a CH cycle and you're experiencing joint pain, I would hold off on any further loading doses and drop back to a vitamin D3 maintenance dose of 50,000 IU/week along with all the cofactors.  After you've been on the vitamin D3 maintenance dose for a week to 10 days, do try to press your PCP/GP for a complete set of labs for your serum 25(OH)D3, calcium and PTH all at the same time.  This is the only good way of assessing normal calcium homeostasis.

Are you taking at least 400 mg/day magnesium and the vitamin K2 complex?  The vitamin K2 complex menaquinones, MK4 and MK7 have the capacity to reduce calcium accumulation in soft tissues, joints and arteries while serving as a catalyst in building bone mineral density.  If you're not taking the K2, I would start it as soon as you can get some.  I take the LEF Super K with advanced K2 complex as it has both MK4 and MK7.

If you haven't already done so, I would add Turmeric (Curcumin) at 1000 mg/day, 1000 to 2000 mg/day Omega-3 fish oil, and 3 grams/day liposomal vitamin C (1 gram every 3 hours).  Curcumin and the Omega-3 fatty acids are anti-inflammatories so should help with the sore knuckle.  Vitamin C is essential as the human genome lost the gene that expresses the enzyme needed to synthesize vitamin C from simple carbohydrates.  Vitamin C is essential in synthesizing collagen needed by cells throughout the body including the cartilage in joints.  It's also a potent antioxidant that supports hundreds of enzymatic reactions.

Regarding the swollen knuckle, I've not seen this as a side effect from vitamin D3 therapy or taking the entire anti-inflammatory regimen in the 10 years I've been tracking results reported by thousands of CHers taking this regimen.  In most cases, vitamin D3 and Omega-3 fish oil would tend to reduce inflammation like this, hence the anti-inflammatory name I gave this regimen.  That said, anything is possible.  The Kirkland Adult 50+ Mature Multi is formulated with 220 mg of calcium here in the US.  It may be different in formulations available in the UK and Europe. 

Take care and please keep us posted.

V/R, Batch

Hi Batch

Thank you so much for replying. It's reassuring that you haven't seen this response before and so hopefully it is unconnected. I have been taking vitamin K (life extension super K) and 400 mg magnesium religiously. I'm also taking omega 3 and vitamin C (but only 1g a day liposomal). I will look at getting some turmeric and upping the vitamin C. I'm going to swap back to my daily doses of vitamin D I think as I was taking it for weeks with no issues and the recent swap to the bio tech 50k tablets has me feeling uneasy. The mature multi seems to have the same formulation with 220g calcium over here too. 

I appreciate your insight, I've been meaning to try the regime for  a long time but after having some success with MM it went to the back of my mind. If I can get it to work for me it will be far easier to maintain.   

Thanks again, Tess

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1 hour ago, jon019 said:

...when episodic most of my cycles were eerily consistent...same number, intensity and timing. but on occasion, would get the "one hour wake-ups" all night long ...very odd change in a remarkably consistent pattern. it had to be an outside influence that i only figured out yrs later (greatly influenced by Batch's thoughts)...musta been allergies...

...would suggest a trial of Benadryl (diphenhydramine)....an old style anti histamine that works much better for clusterheads than the newer versions...do a search here for Batch and benadryl for dosage advice and a way better explanation....

....for reasons i am unaware of O2 worked every time within mins for these wake ups...wasn't always the case "normally" ...where O2 was 75-90% effective..

best

jonathan

Jonathan, yes mine were always very consistent and they mostly came at night, but only every other night. In retrospect this really helped me cope with them because I always had a whole night to recover before heading into the next round the following night. When they recently changed to every night that was game changer because there was no recovery period and very quickly wore down my ability to deal with them.

I looked for benadryl in the UK but it has a different ingredient to your US version. The ingredient (dyphenhydramine) in your version is actually a sleeping pill here! So I decided to just try all the hayfever tablets I could and see which actually worked for me as it was pretty bad this year, I settled on 'piriton' which has chlorphenamine in it. Hopefully it hasn't been to my detriment taking it.

Take care and thanks for taking the time to reply.

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Posted (edited)

Hey Tess,

Sounds like you're on the right track with all the supplements and your plan to switch back to the liquid softgel vitamin D3 formulation.  If you add 50 mg/day zinc picolinate and 400 to 800 mg/day Quercetin, you'll have an immune boosting combination that should lower the incidence of viral infections as illustrated in the following photo of what I've been taking since January of this year.   There's ample medical evidence of efficacy in reducing viral infections for vitamin D3, vitamin C, zinc, and Quercetin in the form of RCTs.  There's an extensive list of vitamin D3 studies at vitaminDwik.com at the following link that provide additional proof of efficacy in treating or preventing 88 health problems.  https://vitamindwiki.com/tiki-index.php?page_id=1336

DmvdWAs.jpg

I was on travel in February and went through Seattle when the COVID-19 Pandemic epicenter was there and I've also flown to Juneau, Alaska from Seattle in June so have I've been through two rounds of the COVID-19 Reverse Transcription - Polymerase Chain Reaction (RT-PCR) assay labs with negative results both times over the last two months.

As a side note, I've not had the flu since I developed and started this vitamin D3 regimen in October of 2010.  Same for my wife.  Between us we've had less than a handful of colds since then as well.

Carol Baggerly at the GrassrootsHealh Nutrient Research Institute has been all over the relationship between vitamin D3, vitamin C and zinc status as they relate to COVID-19 severity like a hawk on a June bug as illustrated in the following graphics.

p5Sox3Z.jpgkbJRuwP.jpg

yH1tvow.jpghxkdMyx.jpgw7Epgij.jpg

Please keep us posted.

Take care,

V/R, Batch

Edited by xxx
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2 hours ago, Rudolph said:

I looked for benadryl in the UK but it has a different ingredient to your US version. The ingredient (dyphenhydramine) in your version is actually a sleeping pill here! So I decided to just try all the hayfever tablets I could and see which actually worked for me as it was pretty bad this year, I settled on 'piriton' which has chlorphenamine in it. Hopefully it hasn't been to my detriment taking it.

Might not be any detriment.  But . . .  According to your NHS, "Diphenhydramine is also called by the brand names Histergan, Nytol Original, Nytol One-A-Night and Sleepeaze."  https://www.nhs.uk/medicines/diphenhydramine/#   Looks like maybe Tesco also sells it (??):  https://www.drugs.com/uk/tesco-sleep-aid-25mg-tablets-leaflet.html

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13 hours ago, CHfather said:

 

Might not be any detriment.  But . . .  According to your NHS, "Diphenhydramine is also called by the brand names Histergan, Nytol Original, Nytol One-A-Night and Sleepeaze."  https://www.nhs.uk/medicines/diphenhydramine/#   Looks like maybe Tesco also sells it (??):  https://www.drugs.com/uk/tesco-sleep-aid-25mg-tablets-leaflet.html

Yes your absolutely right! You can get it easily at any chemist and I wouldn't be surprised if Tesco sells it. Psychologically though I couldn't bring myself to buy sleeping pills to treat my hayfever so I chickened out and bought piriton which probably makes me just as drowsy!!

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Batch, great information. It's good to know there's more than one good reason to be taking the supplements. Sounds like you're doing great on them. I certainly feel more confident I could cope better with covid now than before.  Although I suspect I may have had it back in February just after my husband got back from a work trip to Italy I got a really bad cough that lasted for around 10 weeks and unlike any cough I'd had before. It was before I started the regime was really run down so that's probably why I had trouble shaking it. All good now though!

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