MS pattern or bizzare Basilar migraines?

[jimmylegs]

hey there just dropping in to say hi.

when i was diagnosed i had chronic b12 deficiency on my record but was supplementing hard because i was freaking out, so they ruled out the deficiency in their differential. c'est la vie. to fix my b12 issues i stopped being vegan, went back to omnivore, in the short term took 2000 ucg per day sublingual methylcobalamin, and another good one would be hydroxocobalamin. you won't likely find those in your everyday chemist's. lots of online vendors but in some countries it can be more challenging. long term, now i take a pretty standard b50-complex every day or so, plus aim for red meat (ideally wild game but usually small family farm raised) once a week.

i was all about vit d3 for a while once i got over my early b12 obsession, and took some short term d3 megadoses (about 1 week, on 2 different occasions) followed by 4000 IU per day over a number of years. that just about killed me via mag depletion, because as it turned out i'd also had low magnesium probably as a lifelong deal, lots of status quo stress growing up. i was taking a small amount of mag each day at the same time as d3. pharmacist said no take more and you take half the mag with the d3 and half away. we don't need to go into my year or so of magnesium adventures, you likely can imagine and i don't even know how many times i've told the same story on here anyway! short story, you would probably do well to sort out your mag d3 timing by splitting out your 200mg mag into two 100mg doses.

my background with migraines is there but not terrible, a scant handful of times in my life only. i have had to deal with transient 'scintillating scotoma' a couple times. last time (couple years ago?) i took an extra magnesium glycinate for a couple of days and it cleared up.

we have tons of xp reviewing ppls labs. i have files from around the world (not all in english but i'm usually ok as long as its a familiar alphabet hehe). it usually surprises patients to find that not all 'normal' is created equal. super annoying - should be common knowledge. one day!

there are one or two other nutrients to consider if vegetarian and looking to prevent ms; once you get through the learning curve on b12 and d3 and magnesium that will be soon enough

[NHE]

You guys are awesome! Thank you for sharing this information.
Blood test on December 15th.

Great! So you'll want to stop taking your B supplement about 3-4 days before your test.

[xylogirl10]

I might be waiting for the results for a while due to the Christmas holidays.

My GP decided to run a battery of tests because my normally low blood pressure (around 90/60) has gotten lower in the past few months. It was 70/50 or 70/60 in his office. No wonder I felt dizzy! I have been feeling more light-headed and I have fainted a couple of times in this last month during migraines. My GP warned me that he is suspecting I can't regulate my blood pressure during a migraine, but he is checking my thyroid and other things, just in case. I really hope it is just vitamin deficiency is causing the low BP and it will be normal soon.

He thinks should get another MRI with contrast, regardless of when the results will be. I had an MRI of my neck and head two years ago a few months after my migraines because chronic and the neurological symptoms became weirder. Wouldn't I have had lesions on my brain if I had symptoms for a few months? The damage from the lesions causes the MS symptoms, right?

I also wanted to share a tip for anyone else abroad. Some pharmacies here can order raw ingredients for supplements and then make pills for you with the exact dose you need and with no dyes/sugars/maltodextrin. It is a bit pricey and takes a few days, but I know exactly what I'm taking. Maybe they do this in the US, too?

I hope everyone has a lovely and healthy holiday season!


edit: I also wanted to ask whether krill oil is better than regular fish oil. I poked the capsule and it smelled okay, but I think I will try to find a fish oil with no other supplements in it. I am not sure which fish is best.

[xylogirl10]

They got it back before everyone closes for the holidays. I really don't feel well and I'm willing to try other supplements. Does anything (besides the vitamin D3) look really off?
Vit. B1…..56 ug/l…..ref: 30-76
Vit B6……28 ug.l…ref: 5-30
Vit B12 ….463..ref: 197-771
Vit D3 (25-OH-D3)pg/ml…25,7 (20-70)
Entspricht (under the vit D3, but I don’t know what it is refering to), nmol/l…64,3…ref (50-175)
Natrium/sodium ….139 mmol/l 135-145
Potassium … 4.4mmol/l…5.5
Magnesium…0,93 mmol/l….0,75-1,2.

I will take more magnesium at different times a day…and not with coffee as I read it can hinders absorption (opps!). He didn't test for folate because I'm already taking 1,000 this month and then going down to 400.
Blood levels (red/white) were normal. I have also had a normal blood test 2 months ago with no inflammation or signs of anemia.
My doctor said most things are in the lower normal range, so it can’t hurt to try to raise my levels, but he wasn’t sure what to recommend. He does recommend more vitamin D. I looked at the grassroots site. It seems I should be aiming for 60. I had started taking 1,000 a month ago. I will up it to 3,000 for the rest of winter.

I was prescribed a blood pressure measuring device because it was under 90/60 during my last 3 visits. I will need to track it for a few weeks. Could this be caused by the low Vitamin D3?
The tingling has gotten worse and is spreading over the last month, but only on my left side. It is worse at night and I'm having trouble sleeping. It has happened on my lips before, but 4 days ago it started to happen to my tongue. It feels really weird.

[jimmylegs]

hi okay if b12 is in pg/ml you want it up to 500 minimum.

d3 number doesn't make sense as pg/ml. more typically ng/ml.
re entspricht it means equivalent, they converted the d3 units to SI
25.7 ng/ml x 2.496 = 64.1 nmol/L
64.1 nmol/L / 2.496 = 25.7 ng/ml
it's off a little likely due to rounding
conversion info at: see http://hijazi.us/ClinicalData.htm

with d3 if thinking in nmol/l, aim for 100 first with good mineral status, then can go up to 125, 150 with care.
if working in ng/ml, head for 40 first, double check mineral levels, then continue on higher if desired

it will be easier to achieve higher d3 levels on a lower dose, with the right mix of nutritional cofactors in your system.

re magnesium, that serum normal range is a recognized problem. your lab's range is higher than most i see, which is good. usually you don't want to be anywhere near the bottom half of the serum reference range for magnesium. see if you can get up closer to 1.1 mmol/L.

i like your doc for suggesting you get out of those lower normal ranges. a lot. THINGS YOU NEVER SEE. IS THIS REAL LIFE lol

CAREFUL re just upping d3, make sure you stick to the plan with magnesium as well

in my case low bp is dehydration. there a few things to consider, which could help. i'm mentally sifting through a huge file of past conversations lol! may i inquire as to your main water source (city or well or bottled)? (there's a mag link to d3 in that question). what's your usual daily intake of omega 3 fatty acids?

actually can i just inquire as to your regimen in total, including forms, doses, and timing for each? combinations are as important as anything.

any chance of getting a serum ferritin or a serum zinc level in the new year? or retrieving from older files?

[xylogirl10]

Thank you for your reply and the conversion information. I am wondering what to take with what and when. The GP did stress that it was in normal ranges, but since I have symptoms, it can't hurt to try if I want to. He also said magnesium doesn't help migraines...so there is that. I was quick to point out that the magnesium has been life changing for me, but only the magnesium glycinate type. It also did wonders for my insomnia.

I'm being treated by 3 doctors at the moment: GP, local neuro, and a University neurology center. It is not working out and causing stress for all involved. It might be best to wait a while and then ask for more tests under the guise of "Osteoporosis runs in my family, would you mind checking if my D3 levels are up?" Unless I can get one of the doctors to recommend a test, the GP won't run it. It is my GP who thinks I should have another MRI and a few other tests to see if I have a vascular or nerve issue, but only one of the specialists can order it. It has been stressful.

I am not dehydrated and I'm getting enough salt. I have always had BP dips during migraines, but I have only recently started fainting during them. My migraines last 2-7 days and I had only 4 symptom-free days last month (although I still had some tingling). It has been a bit rough and I will often get lightheaded going up a flight of stairs. My main source is city water in Germany. I have no idea what might be added to the water. Omega 3...I take fish oil pills that have 300 mg. I also eat 1.5 Tablespoons of flax seeds every day. I often eat chia seeds and lots of nuts.

I take 400mg of magnesium now. I had been taking 600mg, but I was able to drop it lower when the migraines got less severe. I could go back up. I also make a turmeric molasses drink every night to get a little extra magnesium. Despite being a vegetarian woman I have never had low iron show up in past tests.

Morning: 1/2 magnesium dose, vitamin D, 1/2 dose Fish oil with E+B vitamins, probiotic, 1000 folate
Lunch: 1/2 magnesium dose, 1/2 dose Fish oil with E+B vitamins

I do plan to find a regular fish oil and then get separate B vitamins. Should I just try 2,000 of vitamin D3 for now? Thank you so much for reading and taking the time to help me figure this out.

[jimmylegs]

hi again
glad the magnesium has helped you.

i would really love to say 'guess the doc has not seen this study yet' but it is such a mess lol.
they clearly mean 2.3±0.4 mg/dl for the control group not 1.3±0.4 mh/dl.(whatever THAT is)...
this is one of those times when i really wonder about the peer review process!!! tsk tsk, harvard..

https://www.ncbi.nlm.nih.gov/pubmed/27140442
"There is controversy over the role of magnesium in the etiology of migraine headaches. We aimed to evaluate and compare serum levels of magnesium between healthy individuals and those with migraine headaches during migraine attacks and between attacks to evaluate the role of magnesium in the etiology of migraine headaches. ... There were significant differences in magnesium serum levels between the three groups (1.09±0.2 mg/dl during migraine headaches; 1.95±0.3 mg/dl between the attacks; and 1.3±0.4 mh/dl in the control group; P<0.0001). Odds of acute migraine headaches increased 35.3 times (odds ratio=35.3; 95% confidence interval: 12.4-95.2; P=0.001) when serum levels of magnesium reached below the normal level. ... The serum level of magnesium is an independent factor for migraine headaches and patients with migraine have lower serum levels of magnesium during the migraine attacks and between the attacks compared with healthy individuals."

re what to take when, your existing plan for mag and d3 looks good, as long as there are not other magnesium-depleting factors lurking in the wider picture. i would also say going back to 600 would be fine IF you can tolerate it and IF it's not linked to your hypotension issues.

sry to hear you are having a stressful time with the docs i am least familiar with available system work-arounds in the eu. whatever strategy gets the job done, do what you gotta do 3:) lol

with city water, they typically need to remove essential minerals so they don't clog up the pipes. it can be a reason people are not getting enough magnesium (but until the bp is sorted out, need to proceed w caution). omegas sound good. so does adding a regular fish oil

to restate, adding magnesium is only advisable after you figure out what is up with this low blood pressure. if fluid intake, salt and omegas are all good, maybe look at zinc as it pertains to adrenal function and hypotension. as a vegetarian you can expect zinc status to be low. ok that's me for now, need a break!!!

[xylogirl10]

Oh my, I didn't even think about the hypotension and magnesium. Good catch! I'll keep it at 400 for now as I use the BP monitor and try to up it later.

I'll pay attention to how much zinc I'm getting over the next few weeks and look into what can deplete magnesium and vitamin D. He might run more tests, depending on what we find from the BP monitoring. I know the water here is hard. We are constantly cleaning the shower head and coffee maker because of calcium deposits. I have a friend who is an engineer who works with water...I'll ask.

Thank you so much! At the very least, more vitamin D might make me less stressed and prevent the blues this winter. It doesn't seem like low vitamin D can cause paresthesia...but maybe it is making the migraines worse and causing it indirectly.

[jimmylegs]

you know what, if you have 100mg mag glycinate, what if you dropped it to 100mg with d3 and 100 away and see if your blood pressure comes up. i personally would be a puddle on the floor (ok that's exaggerating lol) if i took even as much as 200mg of mag glycinate in a day! it would definitely slow me down though. after 100mg of glycinate within one day, i switch to citrate.

interesting about the water. you do want your calcium and magnesium intakes to be balanced and it's pretty easy to have the ca:mg ratio too high. 1:1 to keep it on the safe side (beyond that supplement ratio, you're more likely to add calcium than magnesium in diet given societal tendencies to low mag). 2:1 at the absolute outside (not likely in a possible mag excess situation however!).

good to hear you'll look into the zinc aspect. i saw a study the other day (in kids though) which found that doubling daily intake resulted in a 9% increase in serum levels. in other studies involving kids, if memory serves, you can see differences in serum zinc between little ones who are breastfed vs formula, that kind of thing.
it's challenging to absorb zinc in the context of vegetarian diet. this means that the daily intake amount from food in mg will need to be considered in context of other foods eaten. i think of all my vegan nutrient deficiencies zinc was one of the worst. i was so stubborn about supplements back then too LOL no longer.

[xylogirl10]

it is bisglycinate. Does that make a different?

[jimmylegs]

omg i can't even handle that stuff. it was too much. made me sick for a year while i was figuring out that whole fiasco. i had to back off and i do make an effort to ensure glycinate is the form i use.