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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Noob on D3 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1392121944 Message started by Visperas on Feb 11th, 2014 at 7:32am |
Title: Noob on D3 Post by Visperas on Feb 11th, 2014 at 7:32am
Hi all!
I've recently had a blood test done and asked for VitD levels since I had read a bit about the D3 regimen. The test says I curently have 10,4 ng/mL. Apparently this is a very low vitD level so I've decided to try the D3 regimen and see if it works. I have the full list of substances to take: Omega3, vitD, calcium, magnesium, vitK2, vitA, zinc and boron but I wonder if I need to take all of them to be PF. I've also read here about calcium potentially causing more pain and I'd obviously like to avoid it. Today, I'll go to a pharmacy to check on the prices and availability of these substances in my city and probably will have more questions by then. Thanx!! |
Title: Re: Noob on D3 Post by Emjay on Feb 11th, 2014 at 7:42am
A good multivitamin might give you some of the regimen. I use the 50+ mini-tablets by Rainbow Light and I get the Vit A, Zinc, and some of the K. I have had success (before going off and then re-establishing is a *$#@*). Boron is "new" since I started and can be acquired with a tablespoon of honey. Otherwise, the rest of the regimen is pretty easy to get (in the US) and effective! Didn't your doctor put you on a loading dose of the D?
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Title: Re: Noob on D3 Post by Visperas on Feb 11th, 2014 at 8:10am
I'm not from the US but I don't think the vitamins will be difficult to get, maybe expensive.
The daily boron dose (1mg/day i believe) can be acquired with a tablespoon of honey? That's one thing less to buy! Good! Yes, the doctor told me to buy some VitD mini bottles that I'm supposed to take every 15 days but I think I'll need something more regular, something daily, to beat the beast. Also, Emjay, what do you mean with "before going off and then re-establishing is a *$#@*"? Is it hard to make it work and difficult to do that again after some time without the vits? Don't you take vitD on top of those tablets you mention? |
Title: Re: Noob on D3 Post by Emjay on Feb 11th, 2014 at 9:36am
I was on the full regimen since last June and totally "missed" my fall episode! I am usually dancing with the beast from the end of January through June, then the end of August through the beginning of November. So to miss a season is fabulous! However, when I was tested for my D level, it was 187ng! So, I stupidly listened to my doctor and stopped the D3 completely while staying on the rest of the regimen. Exactly 2 weeks off, the beast returned in full force. I am back on the D3 but getting myself back into whatever my sweet zone is has been challenging. I have been working closely with Batch and he has been enormously helpful! I am not going off this regimen again! I'll titrate down if I have to, but not off. I had a blood test yesterday and I will see what it is and then decide what needs to be done. For me, this regimen has been a blessing. It is worth whatever the "expense" is! Plus, the side effects of more energy, less systemic inflammation, and all the bennies that come with no hits cannot be discarded!
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Title: Re: Noob on D3 Post by maz on Feb 11th, 2014 at 9:48am
Hi visperas
Here in the UK it's very difficult to get the high doses of vitD3. You would have to take bottles of the stuff to get the recommended dose and no one could afford that. I get what I need from iherb.com. Very reasonably priced and reliable. If you are not in the USA you may have to pay for customs and duty depending on the value of your order, so check that out first. Maz. |
Title: Re: Noob on D3 Post by Visperas on Feb 11th, 2014 at 10:06am
Thank you Maz and Emjay!
As expected, the trip to the pharmacy has created some more questions. Despite its availability, it's not that easy to find the specific substances in their specific measure. For instance, there's a pill that includes VitA-800mcg, Zinc-10mg, vitK (not K2), vitD (not D3) and magnesium (non of the specific magneisums listed). Could i take that one plus D3, K2 and magnesium citrate? Besides VitD3, what are the most important substances in the regimen? Maybe, as Batch did in his first try, I can take only the fish oil and the VitD3 and work from there if it doesn't work? |
Title: Re: Noob on D3 Post by Visperas on Feb 11th, 2014 at 3:04pm
Thank you very much for the reply Batch!!
I'm going to think about it, check prices both on the internet and the pharmacy and decide what to do. As soon as I've decided I'll let you know. |
Title: Re: Noob on D3 Post by Chuffy on Feb 11th, 2014 at 6:45pm
@max
I live in the UK and you can get high dose D3 and Super K on Amazon.co.uk. |
Title: Re: Noob on D3 Post by thierry on Feb 13th, 2014 at 4:17am
Hi Batch, thank you for posting the photo of what you take for the regimen.
I see that the Kirkland Mature Multi contains just 220mg of Calcium, is that enough Calcium? I thought that you recommended 500mg calcium for the regimen. All the best :) |
Title: Re: Noob on D3 Post by Batch on Feb 13th, 2014 at 4:57pm
Thierry,
The latest regimen update will call for 220 to 500 mg/day calcium... I'm a cheese head so go through a lot of cheese a week along with a serving or two of salmon, a daily glass of orange juice, and lots of dark green veggies. I also go through nearly a pound of mixed nuts a week for snacks and an occasional serving of ice cream, so my intake of dietary calcium is likely a little higher than most. Accordingly, 220 mg/day calcium is a good supplemental level to bring me up to the calcium RDA of 1000 mg/day. Hope this helps. V/R, Batch |
Title: Re: Noob on D3 Post by thierry on Feb 14th, 2014 at 4:24pm
wow Batch, that's a very healthy diet you're on, sounds great. I wish I was as discipline as you are reagarding what I eat. I ought to make more of an effort, though I am doing all right and do not eat fast food at all
Thanks for the info too. Wishing you and yours a great weekend. |
Title: Re: Noob on D3 Post by Batch on Feb 14th, 2014 at 5:14pm
Hey Thierry,
We just finished a delightful block of Dubliner chedder... so I know you've got some fine cheese there in Ireland... Take care, V/R, Batch |
Title: Re: Noob on D3 Post by derekjoel on Feb 15th, 2014 at 3:08pm
Is there any way to get this supplement list stickied? I think it would be helpful.
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Title: Re: Noob on D3 Post by Visperas on Feb 17th, 2014 at 3:51pm
Hi all!
Today I've started the D3 regimen with the following: - 12000 IU of Vit D3 (it's 4000 each pill) - 1000 mg of Omega3 Oil 350EPA 250DHA - 120 mcg of VitK2 - 400 mg of Magnesium Citrate -a pill of Multicentrum Select 50+ I'm still thinking about making it two D3 pills making 8000 IU or if it will be needed to adjust the quantity to 1000 IU doing two and a half pills. Well, I guess there's not much else to say, we'll see how it goes. |
Title: Re: Noob on D3 Post by Batch on Feb 17th, 2014 at 4:49pm
Hey Visperas.
Thanks for the headzup you've started the anti-inflammatory regimen. Good move... I'm confident you'll find it effective in preventing your CH 12,000 IU/day is fine, but your starting 25(OH)D serum concentration was very low at 10.4 ng/mL. You can safely take an average dose of 20,000 IU/day vitamin D3 for 30 days to build your 25(OH)D more rapidly as that will lead to a faster preventative response. The alternative is the accelerated vitamin D3 dosing schedule that works out to 600,000 IU of vitamin D3 over a 4 week period. This accelerated dosing schedule calls for 20,000 IU/day for two weeks. During that first two weeks you'll take a 50,000 IU loading dose once a week on top of the daily dose. For the second two weeks take 16,000 IU/day. At the end of this 4-week dosing schedule, see your PCP for another 25(OH)D lab test. Your 25(OH)D response should be an average of 60 ng/mL above your starting serum concentration around 70 ng/mL... At that point you should be able to drop your vitamin D3 intake to 12,000 IU/day. See the attached study: Take care and please keep us posted. V/R, Batch ![]() |
Title: Re: Noob on D3 Post by Visperas on Feb 19th, 2014 at 9:12am
Ok. I've increased the D3 take to 20000IU and will keep it like that for a month.
Also, what's the average response time to the regimen for those who found it helpful? Thanx for everything Batch! |
Title: Re: Noob on D3 Post by Visperas on Feb 24th, 2014 at 11:02am
I started the D3 regimen on the 17th. That day and the next I only took 12000 IU of D3 vit, each day since I've taken the 20000 IU plus all the other substances and I haven't felt an improvement in my CH. If anything it might have worsen a little bit. Before starting it I had two-three attacks per day, these last week I've had three-four attacks per day.
According to one of Batch's graph, most people felt an improvement over the three first days so I'm feeling a little down. I've still got some hope but... well, what do I do? |
Title: Re: Noob on D3 Post by Rumeke on Feb 24th, 2014 at 11:25am
Visperas..do not get discouraged! It took me a few weeks to go PF while I adjusted my doses.They would get worse, then get better. Not everyone goes PF in a week...everyone's body reacts to the regimen differently. I'm sure Batch will chime in soon with some encouragement and ideas!
Judy |
Title: Re: Noob on D3 Post by Emjay on Feb 24th, 2014 at 6:38pm
It took me almost a month. Batch is awesome with responding, tweaking, and working with you. Don't let the discouragement get to you. In the mean time, use O2 if you have it. I added energy drinks with taurine & caffeine and use at first twinge.
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Title: Re: Noob on D3 Post by Batch on Feb 24th, 2014 at 11:36pm
Hey Visperas,
No need to feel left out... 50% of the CH'ers who respond to this regimen take more than a week. One of the best indications of how long it takes to respond is knowing the results of your 25(OH)D lab test. With your 25(OH)D serum concentration in hand, we can make a more informed estimate on response times... Without it... we're shooting in the dark. As far as what to try next... skip the calcium for a few weeks... but keep taking every thing else... If you respond like the other CH'ers who experienced an up-tic in the frequency of their CH after starting this regimen, you should start experiencing a reduction in the frequency of your CH in 24 to 36 hours. Take care and please keep us posted. V/R, Batch |
Title: Re: Noob on D3 Post by paulina on Feb 25th, 2014 at 4:37am
Hi. Im new to this site but had cluster for 20 years now. I started the regime for 1,5 month ago as i was low as well in my D3, But I am only on omega, d3 calcium and magnesium. I dont dare to take the K2 because I dont know how I will increase the risk of trombosis when I am on contraceptions as well and allready sk at risk. any one has more information about this. ???
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Title: Re: Noob on D3 Post by Visperas on Feb 25th, 2014 at 9:49am
So, should I have another blood test done? Specifically asking for 25(OH)D ? The thing is I had one not too long ago and I don't know if the insurance will pay for another test. Anyway, if it's important to have it I'll see what I can do.
As I said in a previous post this is what I've been taking: - 20000 IU of Vit D3 (it's 4000 each pill) - 1000 mg of Omega3 Oil 350EPA 250DHA - 120 mcg of VitK2 - 400 mg of Magnesium Citrate -a pill of Multicentrum Select 50+ Every pill of multicentrum has 162 mg of Calcium so, that's what I'm going to cut from the regimen starting today. Let's see how it goes. |
Title: Re: Noob on D3 Post by thierry on Feb 25th, 2014 at 11:06am
Hi Visperas, I am not Batch and don't have anywhere near the knowledge he has but i know that he recommends 400mg calcium, although he does tell some people at times to stop calcium for a couple of weeks. Anyway the multicentrum gives you 164mg calcium so i don't see the need to stop taking it unless he has told you to stop calcium for a while. Also if you stop Multicentrum you won't get the Zinc, Boron and vitamin A so you might need to take those separately. Batch also recommends 2000mg omega 3 fish oil.
He also recommends a lot more than 120mcg of k2, I can' t remember right now how much but i think he talks extensively about this on the last page or 2 of the "123 days pain free, and i think i know why" thread. All the best :) |
Title: Re: Noob on D3 Post by Batch on Feb 25th, 2014 at 2:57pm
Hello Visperas,
Thierry is correct... If the Centrum Select 50 is your only source of calcium... keep taking it... There are too many of the other essential vitamin D3 cofactors in the Centrum formulation so do not stop taking it. My comment to "skip the calcium" was intended to skip the 500 mg/day calcium citrate if you were taking it. Call your doctor's office and ask for the results of your last lab tests... In particular, ask if the 25(OH)D lab test was one of the diagnostic tests performed. If they did do this test, ask for the actual results... they are given in terms of serum concentration usually in nanograms per milliliter, i.e., (ng/mL). In other words, if the nurse says your 25(OH)D results were "Normal"... politely tell the nurse you need the actual concentration... If the 25(OH)D lab test was not done, ask for it along with the lab test for vitamin B12. As far as what to do next... and knowing now what you're taking... I think the best course of action is hang in there and stick with the regimen at the doses you're taking... In other words... don't change a thing. If your 25(OH)D is low, it can still take two to three weeks to elevate it into the green zone (60 to 80 ng/mL) even with the accelerated vitamin D3 dosing schedule. Take care and please keep us posted. V/R, Batch |
Title: Re: Noob on D3 Post by Visperas on Feb 26th, 2014 at 10:37am
In my last blood test, february 6th, they did the calcidiol (vit D 25-H) test and I had 10,4 ng/mL. I have the report with full results and there's no mention of 25(OH)D, mainly because I didn't ask for it. I take it, vit D 25-H and 25(OH)D are different things... In any case, I'm already working on having another blood test done and I plan to ask for: vit D 25-H, 25(OH)D and vit B12. Any other substance I should ask for in the test?
Also, I'm taking the multicentrum pill again so now, my regimen is exactly the same I wrote in my last post. I'm hoping this is one of those case of "it'll get worst before it gets better". Anyway, thank you all. I'll keep you posted. |
Title: Re: Noob on D3 Post by Batch on Feb 27th, 2014 at 12:41am
Hey Visperas,
The 25-Hydroxyvitamin D lab test goes by several names depending on the country. The "vit D 25-H" and 25(OH)D lab tests are one in the same... Different labs use different assay methods but the results should be roughly the same give or take 5 ng/mL. At a 25(OH)D serum concentration of 10.7 ng/mL... you were clearly vitamin D3 deficient. The normal reference range is 30 to 100 ng/mL. The vitamin D3 experts say the real normal reference range is 50 to 100 ng/mL. In either case, you were vitamin D3 deficient... The optimum 25(OH)D serum concentration is 60 to 80 ng/mL. That said, CH'ers have reported a cessation of CH symptoms in a 25(OH)D range of 60 to 110 ng/mL. Hope this helps. Take care and please keep us posted. V/R, Batch |
Title: Re: Noob on D3 Post by Visperas on Mar 3rd, 2014 at 9:56am
I have not had the new blood test done yet so, no news there. The 27th and 28th of february were full PF days and I was getting my hopes high. Unfortunately, the 1st, 2nd and today, the beast was back and kicking. I hope I can have the blood test done soon and I'll report back with any news.
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Title: Re: Noob on D3 Post by Batch on Mar 3rd, 2014 at 11:17am
Hey Visperas,
Are you taking the accelerated vitamin D3 loading schedule? If the answer is yes and you're still getting hit... cut the calcium supplement in half for a few days to see what happens. Take care, V/R, Batch |
Title: Re: Noob on D3 Post by Visperas on Mar 3rd, 2014 at 12:56pm
I've been taking 20000 IU of D3 every day and the only calcium I take comes from Multiventrum 50+. Should I cut the Multicentrum pill? Up the D3 dose?
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Title: Re: Noob on D3 Post by Visperas on Mar 3rd, 2014 at 6:03pm
I haven't been taking the 50000 loading doses but I will take one tomorrow and another next week. Also, the multicentrum only has 3 mcg of B12, so I'll see if I can get my hands onto some B12 tablets. Thanx!!
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Title: Re: Noob on D3 Post by Batch on Mar 3rd, 2014 at 6:57pm
Visparas,
Good move on both counts. The beauty of vitamin D3 at the doses we take is there's really no such thing as an overdose. If you miss a dose, take it as soon as you can... Even if you miss two or more daily doses, take them together along with the regular daily dose. Just remember to take the vitamin D3 with the largest meal of the day for optimum absorption. We would need to take 50,000 IU/day for more than two months to push our 25(OH)D from 30 ng/mL to the lower threshold of toxicity of 200 ng/mL. I based the present vitamin D3 loading schedule on a study of 48 adults who were give a single 600,000 IU oral dose of vitamin D3... There were two other studies using a similar dose. Three days later their 25(OH)D had risen an average of 60 ng/mL above their starting value... There were no cases of vitamin D3 intoxication and no other adverse reactions. In other words, a safe method of vitamin D3 repletion. The vitamin D3 loading schedule has the same 600,000 IU of vitamin D3, but taken over a 4 week period. Given your starting 25(OH)D serum concentration was 10,7 ng/mL, it will likely take you up to three weeks before you start experiencing a sustained pain free response. Take are and please keep us posted. V/R, Batch |
Title: Re: Noob on D3 Post by Judge_Smails on Mar 7th, 2014 at 3:33pm
Batch, I saw earlier in this thread that you were talking about your diet and you mentioned that you eat a lot of mixed nuts. As you may remember I've been on the D3 regiment for about 2 years now and have had GREAT results (skipped my cycle entirely).
One of the things I've been doing religiously, in addition to the vitamins, is eating tree nuts (walnuts and almonds) almost every day. The anti inflammatory qualities of tree nuts is well known, and I have no doubt that a diet high in tree nuts is helpful as an addition to the prescribed vitamins. Good luck every one. |
Title: Re: Noob on D3 Post by neuropath on Mar 12th, 2014 at 1:52pm
K2 is a coagulant and people on blood thinners or DVT history or risk should be careful with it indeed. If in doubt, have your INR blood levels tested.
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Title: Re: Noob on D3 Post by XOMR on Mar 22nd, 2014 at 5:31pm
Hi all,
Another newcomer to the D3 treatment. I was wondering if you could share your responses to the treatment. Batch has been helping me along way with advice and recommendations for dosing and vitamins (thanks again!!) but I'm curious to hear you all knew it was working. I'm a few days towards the end of the 4 week dosing schedule and only recently have I felt some relief. Frequency of attacks has gone down and the pain level at their peak when they do come has declined. But when they come, they come at expected "scheduled" times. So the cylce hasn't been broken but it is a little easier. Is this a typical response or is more of an on/off pain free clarity response? |
Title: Re: Noob on D3 Post by Visperas on Mar 24th, 2014 at 12:36pm
Hello!
After 3 weeks, I'm back to explain how's it going. The short answer is good but I'm gonna elaborate in bulletpoints manner. -I started the vitD3 regimen 35 days ago with a 10.4 ng/mL Calcidiol level and an average of 4 attacks each day. -In this 35 days, I've taken 800.000 IU of VitD3 (among the other substances) and a blood test from 6 days ago says I have a Calcidiol level of 92.9 ng/mL (the B12 level is 553 pg/mL). -This last week I've only had 3 attacks but plenty of shadows. So, apparently the regimen is working but I don't want to count the beans just yet. I think I'm going to keep taking the 20000 IU/day one more week and see how it goes. Also, I have a couple questions: -How's the B12 level? Should I do something with that or keep taking the 1000 mg of B12 each day? -The lab report says that 100+ ng/mL of Calcidiol is the toxicity level but I've read in this thread that the threshold is 200. How's that? Also, in any case, what are the symptons or effects of Calcidiol toxicity? Right now, I should be at 110 so, yeah... A bit worried about that. I think that's all for now. I truly hope it keeps getting better until there's no more shadow or pain to be had. We'll see. PS: XOMR, yes, it has been the same for me. Only this last week I've had some relieve but the cycle is not dead yet. |
Title: Re: Noob on D3 Post by Visperas on Mar 25th, 2014 at 1:41pm
Ok. I guess that tuning the cofactors is what can help me to get rid of the pain? It's that it? Finding a mix of the other substances is what puts the beast to sleep? Increasing the 25(OH)D serum concentration won't do that at this point?
Tuning the cofactors... Right now I'm taking: -20000 IU VitD3 (that will become 10000 soon) - 1000 mg of Omega3 Oil 350EPA 250DHA - 120 mcg of VitK2 - 400 mg of Magnesium Citrate - 1000 mcg of B12 - a pill of Multicentrum Select 50+ -Eliminating Calcium suplements would mean to get rid of the multicentrum pill. -Increasing the magnesium and omega oil is easy. Should I increase both, or only one at a time? Which one first? Also, what do the factors do? Maybe, if I can understand that I can find my mix faster. -Vitamin A (retinol)? I think is the first time I read that one. What's genetic expression? -The B12 Cobalamin concentration is 414,75 pmol/L and I take 1000 mcg each day. Maybe I could try to increase that to 2000? -I'll see what I can do about the diet. I guess that eating plenty of nuts/seeds is easy enough. Which nuts/seeds are best to keep the arterial ph high? Well, many questions, once again thank you for everything Batch. |
Title: Re: Noob on D3 Post by Batch on Mar 26th, 2014 at 1:10am
Visparas,
No need to stop the Multicentrum Select 50+... Every thing else you're planning looks great. Vitamin A (retinol) plays a key role in genetic expression of vitamin D3... There should be a little in your Multicentrum Select 50+ but it may not be enough... I've found a good source over the internet but you may be able to find it at most super markets... It's call A & D... 5000 IU vitamin A (retinol) and 400 IU vitamin D3. There are several brands that offer this formulation. I've also been in touch with Dr. Stasha Gominak, MD, a neurologist in Tyler, TX. She's been prescribing a vitmain D3 regimen very similar to the anti-inflammatory regimen to her migraine patients for over six years with good results... She suggests rather than vitamin B12 to take vitamin B 50 for three months... After that the Mulitcentrum should work just fine. The B 50 formulation is 50 mg each of all eight of the B vitamins. Three months on vitamin B 50 should take care of any deficiencies. Take care and please keep me posted. V/R, Batch |
Title: Re: Noob on D3 Post by Visperas on Apr 5th, 2014 at 12:27pm
Hi!
Since 26th March I've been taking: - 12000 IU VitD3 - 2000 mg of Omega3 Oil 350EPA 250DHA - 120 mcg of VitK2 - 600 mg of Magnesium Citrate - 3000 mcg of B12 - a pill of Multicentrum Select 50+ But I'm not feeling any improvements. Actually, since I did a couple of night shifts, it's gotten worse and I don't know if it's the schedule change or the cofactors tuning that worsen my headaches. That's a big problem for me with this D3 regimen. How do I tune the cofactors when I don't know anything about what they do or their effect in my body? Since the D3 seems to be the key in all this, today I've increased it to 16000 IU. We'll see. |
Title: Re: Noob on D3 Post by blacklab on Apr 5th, 2014 at 9:34pm
hi visperas,
im sort of in the same situation as you. ive been on the regime since last july? from memory. for me, I didn't react as quickly as some, so ive been in fine tune mode for 3 or 4 months lol batch is great in answering all questions. I noticed your still taking b12 the new info, as batch was saying, that dr gominak said, was to take the b50, not just b12. she sais in her video that levels below 500 need to be treated. Im waiting for a current test for d3 and b, and if im under 500, I intend on trying the b50 for a month and get re tested. I get my calcium from the multi, like yours, but every now and then if my diet doesnt have a lot of calcium in it, I will take a calcium citrate 200 for a few days to boost it up, like wise with the magnesium. currently taking 300 of magnesium citrate and the multi has 50mg in it, total then 350 mg, but occasionally ill up it to 500mg depending on how my body reacts. as batch sais, a handful of nuts and berries everyday. have you tried the life extension super k ? which as batch sais has 1000 mcg of k1, 1000mcg k2(4) and 200mcg k2 (7) ? little changes for me have made a huge difference ! im not completely pain free yet, but the worst I get is a kip2-3 more shadows, and a red bull generally kills it. that's a huge difference to a year ago ! soon i'll try the b50 for a month, pending results. somewhere in all this visperas the answer is, im envious of those who go pain free on the basic regime, but im happy with an 80% improvement for me and adjusting and fine tuning show little improvements along the way. after seeing dr gominaks video that batch posted, makes me start to recognise how sleep plays a huge factor, my sleep patterns are terrible and I used to treat sleep as just an obstacle which interfered with my life ! im trying to change that, but we'll see how that goes !! anyways, good luck with your fine tuning, stay positive, and I hope you get to that pain free stage !! regards colin |
Title: Re: Noob on D3 Post by Visperas on Apr 14th, 2014 at 3:57pm
The thing is I don't know how to fine tune this regimen. Tomorrow I'm getting another blood test and will ask for every substance that I'm taking plus some others. I guess that I'll try to maintain a high though not too high concentration of each of them through the regimen but I don't know if there's any precise levels that I should aim for or something like that.
What little changes made a difference for you blacklab? And for everyone else? Also, how long does it take to start feeling improvements or not after changing the dosages? |
Title: Re: Noob on D3 Post by blacklab on Apr 15th, 2014 at 3:27am
visperus, the important ones are the vit d levels, which in the test it will also give your calcium score. the other one which has come to light is the vit b test. the other co-factors that we take are all within spec's so to speak.
I couldn't handle so much magnesium at the start, but have managed to get it up to about 350 mg per day to date, I believe the level batch quotes is 4-450 mg per day, you can check from your multi vit bottle about the daily recommended values required per day. ive since started taking the same vit k that batch does. im playing with the amounts of fish oil I take, as well as a bit extra calcium, if my diet has less calcium in it and will also try to get my magnesium up to 450 per day. its all a juggling act, which you your self will feel when a change happens. the vit b levels that dr gominak said she would treat anyone under that level could be something that could work for you, get tested for it, then you can see where your levels are. in her video, she stated that she would treat any patient with levels under 500 ( from memory) I just got tested and mine were over 600, and were about 350 a year ago, so the multi vit ive been taking has been enough to take me over that threshold over a 6 month period, note that the " recommended levels of 'b' are a heck of a lot lower than what dr gominak believes. im still a work in progress, as I guess you are currently, it took me 3 months before I started to feel an improvement and I continue to get shadows, but less frequently and less painfull. ive only needed to take 2 imigran tablets in 9 months, and everything else has been killed off with red bulls, im half way thru weening off my verapamil, so I will be stand alone on the regime in about 2 weeks. so my advice is to look at the tests, ask batch any question you need to know about levels, and please stick with it, its been a long 9 months for me, but little by little it improves. I hope this helps colin |
Title: Re: Noob on D3 Post by Visperas on Apr 23rd, 2014 at 1:53pm
But how do I tune the cofactors? Increasing them until the head stops hurting?
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Title: Re: Noob on D3 Post by Batch on Apr 23rd, 2014 at 8:07pm
Visperas,
Looks like you're taking all the right supplements at the right doses. Your 25(OH)D is also in the "Green Zone." You might want to drop the B12 and add a three month course of vitamin B50... This should take care of any other B vitamin deficiencies... As to your question on response times... The latest data from the online survey of CH'ers taking this regimen indicates 70% of the CH'ers who respond to this regimen do so within the first two weeks... Most of the rest respond over the following month. That said, some chronic CH'ers have taken as long as two months for a favorable response. Regarding the recent increase in frequency and severity of your CH... A number of CH'ers have reported similar problems... I suspect the increased pollen count that happens this time of year may be the culprit. Allergic reactions to allergens like pollen can trigger an immune response. My thinking now is this immune reaction gobbles up the active vitamin D3 metabolite, 1,25(OH)2D3 leaving too little to prevent CH. I've had the same problem for the last 3 weeks, primarily from maple pollen that's coated my pickup with a thick yellow dusting... I've increased my daily vitamin D3 intake to 40,000 IU/day, increased my zinc to 20 mg/day and added a 1000 mg vitamin C tablet two to three times a day. This is working well for me with great sleep and only an occasional shadow, easily dispatched 2 to 3 minutes with oxygen, after being out in the woods cutting fire wood... Hope this helps... Take care, hang in there and please keep us posted. V/R, Batch |
Title: Re: Noob on D3 Post by Visperas on May 29th, 2014 at 1:47pm
Hi all!
How are you doing? Me? Well, i'm certainly better. The 24th April I augmented my dose to (before that I was taking aprox half of it and it wasn't working for me): -24000 IU D3 -2000 mg Omega3 -3000 mcg B12 -600 mg Magnesium Citrate -240 mcg K12 -2 pills of multicentrum 50+ Since then the amount of pain has reduced significantly. I've had 3 days of pain since the 18th of may and that's awesome. My question is how do I keep tweaking these amounts taking this into question: I had a blood work done 1 week ago and one month ago and everything seems allright except the vit D. The calcidiol (vit D 25-H) level is at 95.5 and was at 98.4 last month. On the other hand the calcitriol (vit D 1,25-D) is at 126.6 and one month ago was at 62.8. -Why has one of them slightly reduced and the other has doubled? -How do I keep the calcidiol where it is now (or maybe slightly increase it) but reducing the calcitriol at the same time? -Also, i've taking 600 mg Magnesium for quite some time and the magnesium levels are lower now than they were one month ago. How that works? -Also too, apparently the risks of intoxication due to the regimen are mostly related to high amounts of calcium in blood, is that correct? If it is, having the calcium levels below 100mg/L is good right? Thanx in advance! |
Title: Re: Noob on D3 Post by Batch on May 31st, 2014 at 10:54am
Visperas,
Great questions... Let's start with your 25(OH)D serum concentration... Yours is between 95 and 98 ng/mL and you're staying mostly CH pain free so this appears to be a good therapeutic range to maintain... The serum concentration of 25(OH)D is essentially a biological marker of vitamin D3 status... The higher the 25(OH)D serum concentration the better and 80 ng/mL is a good target... Above that, there's really no problem until you start approaching 200 ng/mL... Routine serum 25(OH)D, calcium and PTH lab tests are prudent if you need to maintain a 25(OH)D serum concentration above 100 ng/mL The 25(OH)D serum concentration also represent an indication of vitamin D3 reserves once you've reached a reasonably stable serum concentration... and your 25(OH)D serum concentration is relatively stable... Higher 25(OH)D reserves near the target serum concentration mean the incidence of a CH relapse is much lower in the event of a viral or bacterial infection or an allergic reaction... These conditions trigger an immune response that will consume 25(OH)D rapidly as do injury or surgery. 1,25(OH)2D3 serum concentrations are generally a 1000 times less than 25(OH)D and they fluctuate rapidly from day to day as a function of calcium homeostasis. It all depends on the serum calcium concentration and the serum concentration of the parathyroid hormone PTH. When the serum calcium concentration starts to drop, the parathyroids sense this condition and start pumping out PTH. PTH signals the kidneys to metabolize more 25(OH)D into 1,25(OH)2D3 which in turn pulls more calcium from the gut and pushes it into the blood stream. As the serum concentration of calcium rises, PTH drops so less 1,25(OH)2D3 is produced... It's all a very tightly controlled balancing act to maintain serum calcium concentration in a very narrow range. Vitamin D3 intoxication occurs under a couple situations... A hyperactive parathyroid produces too much PTH and this triggers the kidneys to produce too much 1,25(OH)2D3 and this pulls too much calcium from the gut resulting in calcium serum concentrations above its normal reference range... (vitamin D3 intoxication). If we take too much vitamin D3, (a lot more than called for in the anti-inflammatory regimen) our liver will produce too much 25(OH)D. This overloads the body's mechanisms for controlling 25(OH)D metabolism and this can also result in a calcium serum concentration above its normal reference range... (vitamin D3 intoxication). Magnesium plays an essential roll in the enzymatic processes involved in metabolizing vitamin D3 into 25(OH)D and then on to 1,25(OH)2D3, (Calcitriol), the active hormonal metabolite of vitamin D3. Magnesium levels can also be affected by other blood electrolytes... Most of the above discussion deals with the endocrine mode of vitamin D3 metabolism and calcium homeostasis... Roughly 20% of the 25(OH)D metabolized from vitamin D3 in the liver is further metabolized by the kidneys into 1,25(OH)2D3 to maintain calcium homeostasis... The other 80% of the 25(OH)D produced by the liver is metabolized and consumed at the cellular and nuclear level throughout the body in what is called the autocrine path of vitamin D3 metabolism... It's this path of vitamin D3 metabolism we think is responsible for preventing CH and migraines. The leading theory is the genetic expression made possible by vitamin D3, [1,25(OH)2D3] and retinol (vitamin A) trigger the nerve cells to stop producing calcitonin gene-related peptide, (CGRP). CGRP is a vasodilator and responsible for not only pain transmission but also neurogenic inflammation... both are part of the pathophysiology of cluster headache. In this path of vitamin D3 metabolism, 25(OH)D and vitamin A (retinol) are absorbed in the cell wall and metabolized to 1,25(OH)2D3 and a family of retinoids within the cell. The 1,25(OH)2D3 then combines with retinoids to form a bridge attaching to specific genes at a vitamin D3 receptor (VDR) and Retinoid-X receptor (RXR). This process unlocks the cell's genetic library and triggers the cell to perform any one of a number of functions... In our case as CH'ers, the cell slows or stops producing CGRP. It's also important to note that 1,25(OH)2D3 and retinol are consumed in this process so more will be needed to maintain this cell function. So there you have it... How to build a Swiss watch when you only wanted the time... The takeaway is simple, we need all the vitamin D3 cofactors... Hope this helps... Take care, V/R, Batch |
Title: Re: Noob on D3 Post by GracieH on Jun 2nd, 2014 at 8:22am
Returning to the board after many years. Getting my butt kicked by new cycle. I am jumping up and down with joy to see this new regime! I already know that I am very low on Vitamin D and magnesium. So I think I have some hope! Writing down all the ingredients right now. I had started taking Vitamen D2 though and not D3. What is the main difference? Do I need both? Or just one! :D. God bless this board
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Title: Re: Noob on D3 Post by GracieH on Jun 2nd, 2014 at 1:53pm
Thank you Batch! I just got back from Vitamin Shoppe with everything. I printed out your chart showing all the ingredients and how much. Took it as you noted in post above with my lunch, which included some bacon. ;D I used to be helped alot by kudzu, but that apparently is no longer working for me. SInce I know I am low in D, then this makes a LOT of sense. You are so very helpful. I have been reading like crazy here. 8-) I also printed off the chart showing how long it typically takes for effect, so I plan to keep using my ice cube on my ear bump to keep the headaches down as much as I can until then. I have no idea WHY that works. And why the ice has to be on THAT spot. But it usually helps knock it out faster.
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Title: Re: Noob on D3 Post by GracieH on Jun 2nd, 2014 at 4:04pm
All lined up and ready to go!
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Title: Re: Noob on D3 Post by Batch on Jun 3rd, 2014 at 12:43pm
Gracie,
Looks like you're off to a great start on the anti-inflammatory regimen... I'm confident you'll have a favorable response. Regarding the ice cube... I'm very familiar with it and called it acu-ice... The only difference is I placed a single ice cube wrapped in a damp paper towel on top of my head, just off center on the hit side on a line above the front of the ear. I did some research on why this works... It turns out there are branches of the occipital nerve and one other nerve that are affected during a CH attack. Chilling them and the capillaries that feed them triggers vasoconstriction which reduces pain transmission. Take care and please keep us posted. V/R, Batch |
Title: Re: Noob on D3 Post by GracieH on Jun 3rd, 2014 at 1:22pm
Well how "cool" is that! No pun intended Batch. I can now just say that my ice cube is acu-ice, so deal with it! ;D
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Title: Re: Noob on D3 Post by Visperas on Jun 5th, 2014 at 1:17pm
Hi Batch!
Well, yes, your explanation is too complex and i don't feel like my doubts have been answered so, I'll try to be clearer. These are my levels: 15/4/14 22/5/14 calcidiol 25-h 98,4 95,5 calcitriol 1,25D 62.8 126,6 1. Why has the calcitriol increased but not the calcidiol? 2. One month ago, I still wasn't pain free as I am now (for the time being, fingers crossed), the makes me think that the real helper is calcitriol. 3. Despite its safeness, if there was a toxicity problem it would be related to calcium, right? So, if I have a calcium level of 96, am I safe? 4. Is it ok to take 5000 IU of vit A daily? Any risks? Thank you again!!! |
Title: Re: Noob on D3 Post by GracieH on Jun 6th, 2014 at 7:26am
Well after 7 nights of 3-4 headaches per night with little sleep, last night was a nice break. Just 2 milder shorter headaches. I figure I got 5 straight hours of sleep! Wooooooo hoooooo! Does this regime work that fast? Or just lucky? Can I keep taking some kudzu with this too? Or not good idea.
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Title: Re: Noob on D3 Post by Guiseppi on Jun 6th, 2014 at 8:24am
For some it works even faster! I'm 4 years pain free on this regimen after over 30 years of episodic CH, I stay on a maintenance regimen permanently now, 5000 D-3 a day in addition to the other "stuff" Batch recommends. My wife and I get giddy when we talk about how simple it's been to remove a beast from our lives that seemed to run our marriage for so many years. Hoping it does the same for you.
Joe |
Title: Re: Noob on D3 Post by Visperas on Jun 6th, 2014 at 9:48am
What about the vitA, is it safe to take 5000 IU daily?
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Title: Re: Noob on D3 Post by GracieH on Jun 6th, 2014 at 10:38am
Guiseppi, that is awesome! I kinda figured that I was so low on D3 that it would take a while longer. I am hoping this will follow the curve of effect that I have seen above. I feel so much better just getting 5 hours of sleep! My two dogs that sleep with me are also happy not to be interrupted in their sleep as I get up, get an ice cube and pace a bit till it goes away. [smiley=vrolijk_26.gif]I am rooting for EVERYONE that has the beast to find help with this treatment plan, which is so much less risky than some of the drugs the neuros often push on you.
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Title: Re: Noob on D3 Post by Visperas on Jun 6th, 2014 at 3:49pm
Thanx! You're great!!
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Title: Re: Noob on D3 Post by GracieH on Jun 7th, 2014 at 7:32am
Good morning! Just one minor headache at 12:30 am! 6 straight hours of sleep! Woooooooooo hoooooooo! We are on the way. I cannot thank you enough.
I have been reading most if this post going all the way back to the beginning. I am a learning sponge and took lots of notes. Going to start eating more alkaline foods and less that produce body acid. I always knew there had to be a good excuse to eat more watermelon! :D I do have a question about how sleep cycle fits into this. Most of my cycles have kicked off when something got me out of my regular routine. I assume that when that happens it affects us CH folks in a way that throws off our PH? Or it is some other effect? |
Title: Re: Noob on D3 Post by GracieH on Jun 9th, 2014 at 11:26am
What the hell is the photo that appeared in my post above?? Never saw that photo and did not upload it. UGH! It was supposed to be my two dogs with a THANK YOU. So I deleted the bizarre photo.
ANYWAY, I am kind of stuck at 1 or 2 minor headaches at 12:30 am and then about 4:30 am. But having faith that things will get better! |
Title: Re: Noob on D3 Post by Batch on Jun 9th, 2014 at 12:51pm
Gracie,
Thanks for the update... I understand the frustration that you're not completely pain free. It's only been a week since you started the anti-inflammatory regimen and you've already experienced a favorable response with a reduction in the frequency and severity of your CH... I'm confident, with a little more time, your CH symptoms will continue to decrease until you're pain free. Once you've been taking this regimen for a month, try to see your PCP for another lab test for 25(OH)D. After that, the best course of action is to continue taking this regimen year-round at a vitamin D3 maintenance dose of 10,000 IU/day. Take care and please keep us posted. V/R, Batch |
Title: Re: Noob on D3 Post by GracieH on Jun 11th, 2014 at 9:31am
Boogers. Yesterday was a step backwards. I took the dogs for a walk about 7:30 pm and it was still pretty hot outside. I ended up with minor headache at 8 pm and then had 2 mild ones at 11 pm and 1 am. UGH. Not sure why this happened.
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Title: Re: Noob on D3 Post by GracieH on Jun 13th, 2014 at 9:12pm
Last night was pain free!!! Wooooooo hooooooo. And no shadows today. Here's hoping that this is the home stretch
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Title: Re: Noob on D3 Post by blacklab on Jun 14th, 2014 at 8:16am
congratulations GracieH
may it continue for you regards colin |
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