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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Not absorbing D3 very well......hardly at all http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1474459798 Message started by littlee on Sep 21st, 2016 at 8:09am |
Title: Not absorbing D3 very well......hardly at all Post by littlee on Sep 21st, 2016 at 8:09am
Hello Batch,
Hope you see this. I'm 2 weeks into the regimen. Sep 7 my 25 OH level was 39ng/ml. On Sep 19 (took 2 days to get the results this time) it was 45. I've taken a bottle and 2/3 of a second bottle of Solgar Liquid Vitamin D3 59ml, 2500 IU (per .5ml) thru today, 2 days after the 2nd test. I assumed my test would tell me >80 ng/ml. Each bottle should have 295K IU. Been taking the cofactors (except calcium after the first 5 days. other than whats in the 1/2 dose Mega Mens's) and everything with the largest meal. Last 3/4 days been spreading out the D3, a little in the morning and right b4 bed, rest with largest meal, per some advice you gave earlier. Is my math off? The only weird thing is the lab told me 2 days for D3 results when the first test (same lab) I had results same day. Is it worth another test? Different lab? Have to wait till Monday in any case. My calcium, magnesium, PTH levels are all fine! Starting week 3 of my cycle (normal peak week 4), headaches seem to be picking up in intensity and just had a middle of the day hit (first one). Wouldn't you know there is a 4 day holiday this weekend and no chance of O2 delivery. I have O2 till probably SATURDAY. DAMN!!!! |
Title: Re: Not absorbing D3 very well......hardly at all Post by littlee on Sep 27th, 2016 at 10:56am
Hello to all,
wanted to give an update in case this issue comes up with anyone else. Since my Sept 19th test I've kept mega dosing on liquid D3. I've consumed approximately 800K IU since I began 20 days ago or about 40K per day on average. Had 2 tests done today, Sept 27th, with competing labs within a half hour each (Batch did this once before and I liked the idea). First results are back. The new lab says 175 nmol which converts to 70 ng/ml (please correct me if this 2.5 conversion is wrong). So I'm absorbing D3!!!!! Perhaps a bit slower than expected but absorbing nonetheless. I'll wait till Wednesday for the other test to come back to confirm whether this lab is just bad or perhaps I had a bad bottle of D3 or just don't know what happened. The bad news is I'm at 70 ng/ml and still having headaches. Again, this is my first attempt at no Verapamil as well but so far my cycle is milder. Headaches overall less intense and mostly sticking to nighttime. I'm hitting the O2 pronto and it's taken care of all but a few 6's/7's. This is the start of week 4 which is usually pretty nasty for me. I'm going to keep the D3 going in the 50K range for the rest of this week and see what happens. Will keep you posted! |
Title: Re: Not absorbing D3 very well......hardly at all Post by Hoppy on Sep 29th, 2016 at 1:02am
Just chiming in! I sit on 70ng/ml by taking 5000iu of vitamin D/day, and been CH free for the past 3/12yrs. I take Biovea vitamin D softgel's, so I'm wondering why you are taking the liquid form?
Cheers Hoppy |
Title: Re: Not absorbing D3 very well......hardly at all Post by littlee on Sep 29th, 2016 at 4:58am
Hello Hoppy,
Living in Bulgaria at the moment. Don't have access to everything but this Solgar liquid D3 seemed like a nice convenient brand. Especially when your taking 50K per day. I just pour it into a 2.5ml (something like a tablespoon) which is 25K IU, do it twice and whalla. Once I get to maintenance dose level (probably a few days) the logistics of actually taking it will be easier. I don't generally take any D3 while I'm off cycle. Usually 1 1/2 years between cycles for me. I might consider making a maintenance dose just a daily habit from now on. By the way, 2nd test came back at 63 ng/ml. Taken within a half hour of the other test that showed 70. Close enough I guess. Last night was a good night. Actually got 2 blocks of 3 hours sleep each. One headache in between was just annoying enough to need O2. Also, busted for the 2nd time yesterday on MM but a very mild dose again so not sure what help it might have had. Took some at 4:30pm, half as much at 6:30pm, got bored and went to bed with a book at 8:30 (previous night was a bit difficult). Anyway, overall my first cycle without verapamil and I must say (knock on wood), Not Bad! Less severe headaches overall and no significant ramp up now that I'm in my 4th week (usually bad). I think the D3 certainly is helping. |
Title: Re: Not absorbing D3 very well......hardly at all Post by Hoppy on Sep 29th, 2016 at 5:22am
Just wondering! Are you taking all the other cofactors together with the vitamin D with your main meal of the day? This is important for the regimen to have any chance of working. Also you must take this regimen for the rest of you're life to keep the [smiley=evil.gif] at bay.
Hoppy |
Title: Re: Not absorbing D3 very well......hardly at all Post by Peter510 on Sep 29th, 2016 at 5:37am
What Hoppy said.
If you don't take the D3 regimen with a substantial meal, the chances are you will just pass most of the benefits out. Again, as Hoppy says, stay on it all year round, whether in cycle or not. I have half my family taking it as a matter of habit, for various ailments and there is not a single one has told me they don't feel benefits. So, it's great for general health, so why not????? I am a chronic sufferer and my 24 (OH)D levels when I started were extremely low, so it took a few months to get up to a level where I benefited. So perseverance is the watch word. Incidentally, are you a smoker? I don't know about D3 and some of the other cofactors, but smokers do not absorb Vitamin C very efficiently. Maybe Batch might have a view on that???? Thanks for keeping us posted. Best, Peter. |
Title: Re: Not absorbing D3 very well......hardly at all Post by littlee on Oct 1st, 2016 at 4:41am
Taking with meals for sure.
Been splitting the dose lately during Mega Dosing. Taking half the D3 and Cofactors 2x per day during meals. I don't really have a Heaviest meal of the day. Not a smoker! The BEAST hit me Thursday and last night the hardest so far. Last night O2 wouldn't help at all during 2 hits at 3am and 5am and I was sent pacing, moaning, twitching. The only thing different was Wednesday was a good night Tuesday bad), almost completely pain and shadow free so a bad Thursday was not unreasonable. I used to go every other at times. Wednesday I tried my second mild MM bust (waited only 3 days after a painful Tue night) which may have contributed to a PFDAN and then slapback Thursday/Friday (sounds like some kind of menu special) Also, yesterday I dropped my D3 dosing to maintenance. The only other variable: I had in-laws in town and made a batch of double chocolate chip cookies. They looked so good I ate 2 or 3 before bed. I'm guessing at this point, any of the above or who knows, other than the Beast needed feeding in week 4, especially for me. I may go back to Mega Dose level for a few more days (I'm sure I'm >80 by now anyway) Also, I'll wait, I guess, till Monday, 5 days, and maybe MM bust again with a little stronger dose. I see 5 days between in many threads and I still don't understand exactly why. |
Title: Re: Not absorbing D3 very well......hardly at all Post by Batch on Oct 1st, 2016 at 4:07pm
Littlee,
I just went over all your posts... Unless I missed it... I didn't see that you've taken any Benadryl (Diphenhydramine). Check with your local chemist/pharmacist for a good first-generation antihistamine like Diphenhydramine and take the minimum dose am and pm. First-generation antihistamines like Diphenhydramine HCL cross the blood brain barrier to block H1 histamine receptors on neurons in the trigeminal ganglia. Second- and third-generation "non-drowsy" antihistamines can't cross the blood brain barrier so are not much help to CHers. It appears blocking the H1 histamine receptors helps prevent the release of CGRP, Substance P and other neuropeptides responsible for CH neurogenic inflammation. Several studies have found CGRP elevated during the pain phase of cluster and migraine headaches so it is considered to be the culprit responsible for CH pain. I recently experienced an allergic reaction that knocked me out of remission and had the CH beast jumping ugly once or twice a night during sleep. Loading doses of vitamin D3 up to 50,000 IU/day had only a small effect on intensity so I knew it was time for Benadryl (Diphenhydramine HCL). I decided to try a different form of Benadryl to see if it worked any faster with less drowsiness so I started taking Children's Allergy Relief liquid Benadryl (Diphenhydramine). I found that 12.5 mg taken in the morning and evening along with loading doses of vitamin D3 ranging from 30,000 IU/day to 50,000 IU/day resulted in CH pain free sleep the first night and no real drowsiness during the day. I'm still CH pain free. Hope this helps. Take care and please keep us posted. V/R, Batch |
Title: Re: Not absorbing D3 very well......hardly at all Post by littlee on Oct 11th, 2016 at 1:22pm
I've posted stuff elsewhere and shared some PM with Batch but I wanted to keep this thread intact should it ever help someone else.
My Oct 4th lab work showed 65ng/ml. 30 days earlier I started (39ng/ml) on the regimen and took 1.18M IU's over that period of Solgar liquid D3 (59ml per bottle x 4). Assuming 10K/day is a maintenance dose level (30x10K), that's 300K IU's to keep me at 39ng/ml and the rest or 880K IU's(1.18M -300K) should have contributed to elevating my levels. Based on 10 points in ng/ml per 100K, I should have gone up 88 to 127ng/ml, in a perfect world I guess. I only rose 26 points to 65 ng/ml which equates, I think, to 30% absorption. Batch sent me a list of things that could possibly disrupt absorption. None apply to me (at least that I'm aware of). Somehow I need to understand this absorption issue. Not sure how to tackle narrowing down any other health issues that may impact absorption. At least next time, assuming my cycles stay the same, I'll ramp up my D3 well before I expect the Beast. Since a week ago, Tuesday, I went another 5-6 days at 50K doses per day to no benefit, in fact, even worse headaches typical of week 5 of my cycle. I tried adding the 12.5mg's of Diphenhyramine HCL every 4 hours to no help. I even tried MM busting for the 4th time last Saturday (many over at CB.com said 4th times the charm). No help and a KIP 9 2 hours in mid-day as a reward. Based on this bewildering lack of D3 absorption and no progress on reduced pain I decided to turn back to Verapamil. I've taken 120mg 2 days, today up to 160mg. Still no help but expect some soon. I've never had to take more than 240mg to get help. I've kept up on the D3 at about 25K per day but after reading the other threads on Verap and D3 absorption I think I should stop. I'm torn a bit here. I know many are getting help >80ng/ml. I'd like to simultaneously keep working on the D3 while taking the Verap. I'm not really able to separate the 2 doses. I need to spread my Verap out in 40 mg doses, every 8 hours, soon to be every 6 most likely. Not sure there's room to take D3 between these doses. I really need to get some sleep. I haven't had more than 2 hours straight now for almost 6 weeks (that's a lie, I did have a four hour blast 1x after taking 50mg Dyphen but then got hit hard). It's week 6 and normally that means time to celebrate. This doesn't feel even close to that. |
Title: Re: Not absorbing D3 very well......hardly at all Post by Hoppy on Oct 11th, 2016 at 4:22pm
120mg of verapamil is ok to take with the vitamin D regimen or even a higher dose is ok, so long as your not taking a daily calcium supplement with it, but to get proper CH relief from verapamil you need to take 360-480mg/day, some folk go as high as 900-1000mg/day before getting any relief.
Hoppy |
Title: Re: Not absorbing D3 very well......hardly at all Post by littlee on Oct 14th, 2016 at 6:29am
Thanks again as always,
My 2nd day at 160mg of Verap and I'm getting some relief. Nothing during the day anymore and the ones' still coming every 2 hours at night are easily and quickly gone with O2 so getting more net sleep for sure. Also, I am keeping up on the D3 at 40K per day for now but split into 2 doses and modified as follows: 1. no half dose Mega Men's now (it has a bit of calcium) 2. I'm doubling the Magnesium & Omega doses 3. Adding Zinc on its own. Was in the multi 4. Almonds for Boron which I eat generally anyway 5. 2K Vit C dissolved in my water for both doses 6. Still taking the B50 and K My body (and head) seems to like this version. Last night I swear some eve shadows that felt like the long stay kind went away about an hour after taking my eve dose. Between the Verap and the D,C,Mag,Omega combo something is working and I was actually tossing and turning in bed last night, not with a headache but just couldn't shut it down. This is normal for me and the first hint of normal I have felt since pre-cycle. I'm upping Verap to 200 per day to see if I can get more than 2 hours sleep at a time. 240mg is the max I've ever needed on Verap. This stuff really makes Zombie like. I don't how people take heavy doses of this stuff. My blood pressure is generally low with a low resting heart rate. I'm watching it. Tempted to reintroduce a before bed Diphyn HCI dose but not sure that's smart with the Verap. Anyway, finally some encouraging results. I'll keep it like this and see how it goes. Maybe knock down the VitD to maintenance after a few more days. Check blood again the end of next week. Thanks again! |
Title: Re: Not absorbing D3 very well......hardly at all Post by littlee on Oct 19th, 2016 at 11:35am
Another blood test:
25OH 67 ng/ml (slightly higher than previous at same lab) Calcium 2.4 same result (diff lab) Magnesium .9 same result (diff lab) PTH 24 (quite a bit lower than 38 from diff lab 2 weeks ago) Not sure what to think about my overall lab work during this cycle. Not much confidence in the quality. In this case, my 25OH levels are more or less unchanged, as well as calcium but the PTH moved quite a bit. Not sure what to think at this point. In any case, I'm starting week 7 of my cycle, I'm about a week now on Verap (up to 240mg/day then backed off to 200) along with the D3 regimen which I started immediately 6 weeks ago when the Beast arrived. The good news, 2 nights ago I had very modest headaches early in the night, easily O2'd (I like O2 as a verb!), and then 6 hours straight of blissful pain sleep. Hope springs eternal. Last night, slightly stronger headaches early, then a 4 hour sleep. Nice!!!!! I call that 2 days of progress. Some iteration of Verap, D3 (modified with double mag/omega) and time seem to have begun to work against the beast. My cycles would normally be tapering off about now. If I was able to elevate my D3 serum level more, I would attribute more there but I've somehow been stuck at this mid 60's number for several weeks, much of it a very painful time. Just don't know. Need to try another D3 source but having a hard time finding it here in Bulgaria. For now, I'll keep maintenance dosing D3 with the Verap combo and report back later |
Title: Re: Not absorbing D3 very well......hardly at all Post by Batch on Oct 19th, 2016 at 12:30pm
Hey Littlee,
Another wonderful update with a positive trajectory... Your labs look ok to me. It's good to see your PTH is dropping lower. What this is telling us is less vitamin D3 is going into calcium homeostasis and more is going into genetic expression. The pain free periods of sleep tell us the same thing. I'll make a SWAG that your 25(OH)D will start climbing a little faster over the next month and your pain free periods will also increase. Hang tough and stay the course... V/R, Batch |
Title: Re: Not absorbing D3 very well......hardly at all Post by littlee on Nov 23rd, 2016 at 10:04am
Update!!
It's week 13. Normally 6 weeks and I'm back. Two years ago it almost went away week 5 then roared back and stayed about 12 weeks. 1st time ever this happened after 35 years. This time it almost went away week 6, now just constant shadows and hits when I try drinking and suddenly I've needed a quick O2 hit 2 out of the last 3 nights. Very mild hits and cured quickly. Otherwise been sleeping wonderfully for over a month now, taking 240mg of verap and the D3 regimen. Two weeks ago my blood work came back 61 OH, 41 PTH, 2.25 Calc. The highest I ever got was about 69ng's after taking it since Sept 5th. I just finished trying a different D3 brand and then mostly 10K a day dosing levels while trying to wean down a bit on the verap (200/160mg), while testing a few beers, feeling like its about done. Some combo of the above reversed that trend. Shadows were stronger. I immediately went back to 50K Solgar for the last 2 weeks and the 240 mg verap level. More or less fine save the last few days of minor hits during the night. My blood work today showed, 61 OH, 41 PTH, 2.33 Calc. after 2 solid weeks of 50K IU's per day. Really having issues with absorbing this stuff. In any case, hanging tight and waiting. |
Title: Re: Not absorbing D3 very well......hardly at all Post by littlee on Nov 24th, 2016 at 10:34am
Ooops...made a mistake in the previous post, My bloodwork "today" above was 57ng for 25OH, 36 PTH, 2.33 Calcium
Hence the shock when it falls from 61 to 57 after 2 weeks of 50K IU's per day. One of the labs here (Bulgaria) mentions this 10 day lag issue (results reflect blood levels 10 days ago). That would explain a bit. I've posted this "lag" issue of lab results to 25 OH levels a few years ago as well but nobody heard of such a thing. Not sure if its local testing methods or just nonsense. |
Title: Re: Not absorbing D3 very well......hardly at all Post by Batch on Nov 24th, 2016 at 10:22pm
Littlee,
Your lab results as of the day of the blood draw, look great and are well balanced for an otherwise healthy adult. What's confusing is you're taking 50,000 IU/day vitamin D3 and still near the tipping point for CH attacks as evidenced by the shadows. How long were you taking 50,000 IU/day vitamin D3 before the blood draw for your lab tests? If you were taking 50,000 IU/day for 10 days to two weeks before the blood draw, your serum 25(OH)D concentration should be much higher... like up around 100 ng/mL or even higher. If you started taking the 50,000 IU/day after the blood draw, we'll need to wait for your next set of labs. Assuming your labs for 25(OH)D serum concentration of 57 ng/mL occurred after two weeks taking 50,000 IU/day, there are a few things may be happening: (1) your immune system is consuming 25(OH)D at a high rate or (2), there's a significant source of inflammation somewhere in your system that's consuming 25(OH)D, or (3), something is interfering with the hydroxylation of vitamin D3 to 25(OH)D in the liver, or (4), any combination of the above. Are you taking any other Rx medications besides the verapamil? Please give me the link for the Solgar 5,000 IU Vitamin D3 softgels you're taking. As long as you're satisfied with the Solgar vitamin D3, there are a few things to try. (1) Increase the vitamin D3 loading dose to 100,000 IU/day for two [2] days then drop back to 40,000 IU/day. That should stop the shadows... (2) Increase your magnesium dose to 600 mg/day or 800 mg/day split 400 mg in the morning and 400 mg in the evening to prevent osmotic diarrhea. Increasing the magnesium should increase the enzymatic processes that hydroxylate vitamin D3 to 25(OH)D. (3) Increase the boron dose to 3 mg/day. This will also help increase the enzymatic processes that hydroxylate vitamin D3 to 25(OH)D. (4) Take a 1000 mg tablet of vitamin C every two hours throughout the day for a total of 6000 mg/day. This should help quell any infection that's causing your immune system to consume 25(OH)D at high rates. What to look for in your next set of labs... Your serum 25(OH)D should go up by 20 ng/mL to a total of 80 ng/mL. I know there's a possible problem with vitamin D3 absorption, but that's only the first part of vitamin D3 pharmacokinetics... The normal reference range for PTH is 17 to 70 pg/mL, so you should see your PTH drop to a range between 22 to 25 pg/mL. The normal reference range for serum total calcium is 2.1 to 2.8 mmol/L so you might see a slight increase in serum total calcium from 2.33 to 2.50 to 2.60 mmol/L. Take care and please keep us posted. V/R, Batch |
Title: Re: Not absorbing D3 very well......hardly at all Post by thierry on Nov 27th, 2016 at 10:39am
Hey Batch, i love reading your posts. I learn so much every time.
Thank you. All the best for this festive season to you and yours. |
Title: Re: Not absorbing D3 very well......hardly at all Post by Batch on Nov 27th, 2016 at 5:40pm
Hey Thierry,
You're right... this is a wonderful festive time of the year. We flew from Seattle to Dulles near DC to spend Thanksgiving with family and friends in the Northern Virginia area. Today I drove to Elkton, VA to have lunch with a fellow CHer and her family. She's a few weeks shy of one year CH pain free taking the anti-inflammatory regimen and loving every day... I can't think of anything more rewarding than to celebrate an occasion like this. Take care and all the best to you and yours. V/R, Batch |
Title: Re: Not absorbing D3 very well......hardly at all Post by littlee on Jan 10th, 2017 at 1:04pm
Update on the absorption issue. After a new record for a cycle (14 weeks), headaches finally left just before traveling back to the states for xmas. Thank god as I love IPA's.
Had my serum level checked just before leaving Bulgaria, it was 59 ng/ml. Had it checked back in Chicago, it was 165 ng/ml. Needless to say I was not having an absorption issue. Holy moly! Toxic was how my doc described my levels but it seems Vit D is something the body can handle in excessive doses. Don't know why the Bulgarian labs were crap. Two different labs had the same measurements. In any case, throughout my cycle I was heavy on D3 (understated), normal amounts of Verapamil for me (200/240) with very little pain after the Verap in week 4 unless I tried to drink anything until week 14. Not sure what the take away is. My headaches climbed in intensity the first 3-4 weeks while mega dosing on D3 only. Not sure what levels I reached in my blood at that point given the BG lab results issue. Hopefully I have 18 months to think about it. In the meantime, I wish all of you a 2017 full of PFDAN's. Thank you to all those who respond to posts here. God bless! |
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