MS pattern or bizzare Basilar migraines?

[xylogirl10]

Hello. I'm a woman in my late 20s and have been diagnosed with chronic migraines for the last few years, but the aura/neurological symptoms have been getting more severe and lasting longer. I'm starting to suspect something else is going on. I realize MS can affect every very differently, but I'd appreciate if someone could tell me if this could be an MS pattern. I have had migraines since I was 11, but the ones with the weird symptoms started 4 years ago and have been getting progressively worse and more frequent.

Most of my attacks are the Basilar kind and they can last for 3-7 days. I have tried several medications for migraines over the years and I'm either not responsive or had an allergic reaction (triptans). The one thing I have responded to for aborting a 6+ day migraine is a high dose of steroids. I often have aura symptoms for hours before a headache (left side around temple) and I have auras during the headache: sparkling in vision, severe vertigo, ringing in ears, nausea, fatigue, aphasia and word salad, feeling very cold (my blood pressure often gets lower), and tingling in my left arm and face. The tingling will get more severe each day and has gotten painful at times. The aura symptoms can last 20ish min and appear sporadically throughout the day, but the dizziness and tingling have lasted several days in a row over the last few months. I also frequently drop things with my left hand during these attacks. I can also have trouble concentrating and a few times, on day 5-7, I can have brief moments of confusion and I'm not sure where I am. I have 1-3 non-migraine days a month. I can also have vaginal discomfort and pain during attacks, but my doctor has heard of other women having that issue with an IUD.

I moved to a new place and I am under the care of two neurologists (local and a university research center who I will see for the 2nd time in a few weeks). I did have an MRI and CT with contrast of my head and neck 2 years ago after I had a migraine so bad my roommate thought I was having a stroke and brought me to the ER. I still had some neurological symptoms for a week after the migraine resolved, but the scans were clear of lesions. They also ruled out Meniere's disease. I'm wondering if this could be an MS pattern or something else they should look into (vascular? nerve related?). The University center didn't seem to believe my symptoms were so severe, but my local neuro called them to tell them that she has witnessed my odd symptoms and has even suspended my driver's license because of them.

Thank you for any perspective you can offer. The only other condition I have is Raynaud's syndrome.

[xylogirl10]

I forgot to mention that I do take supplements: Vitamin D, Magnesium, and fish oil with B-vitamins. I don't think I have had a blood test to check if I have a deficiency, but I will ask for one, just in case. It would be wonderful if doubling my vitamin D pills fixed things!

[NHE]

I forgot to mention that I do take supplements: Vitamin D, Magnesium, and fish oil with B-vitamins. I don't think I have had a blood test to check if I have a deficiency, but I will ask for one, just in case. It would be wonderful if doubling my vitamin D pills fixed things!

What type of magnesium do you take? Magnesium can help with migraines, but it's important to take a form that's well absorbed like magnesium glycinate for example.

[xylogirl10]

Thank you for your reply.
Advanced MAGNESIUM (by InnovixLabs). Highly Bioavailable Bisglycinate + Malate Formula, 150 Vegetarian Capsules. 200 mg Magnesium per serving.
I'm not sure if I should include a link?: https://www.amazon.com/gp/product/B00QS ... UTF8&psc=1

It is the only one that hasn't caused stomach issues. It isn't buffered with magnesium oxide. I take 2 pills a day (440mg) and I also add molasses to my coffee/eat nuts. I have noticed less muscle cramping since taking it 2 years ago. I started the fish oil with B vitamins a year ago and I take vitamin D every winter.
I also put my foods into an online food diary to make sure I'm eating everything I should be. I'm a vegetarian (with the exception of the fish oil) and I have to avoid a few foods because they can make a migraine worse or trigger one.

I found a few links on here that said that people with neurological issues might need more vitamin D. I will ask for the blood test and talk to my doctor about this information.

[NHE]

I also put my foods into an online food diary to make sure I'm eating everything I should be. I'm a vegetarian (with the exception of the fish oil) and I have to avoid a few foods because they can make a migraine worse or trigger one.

Vitamin B12 is only available from animal products. How much B12 are you getting in your B supplement? What type of B12 is it, e.g., cyanocobalamin or methylcobalamin? Have you ever been tested for B12 deficiency?

[xylogirl10]

I take 2000mg fish oil. It has 6ug/Mcg of B12. Supposedly 240 percent of my daily requirement according to the box. It also has vitamin E, B1, B6, omega-3, and folic acid.
The b12 is the cyanocobalamin. Is one better than the other? I'll also request a B-12 test...

I do eat an egg every day, yogurt, and some cheese.

[NHE]

I take 2000mg fish oil. It has 6ug/Mcg of B12. Supposedly 240 percent of my daily requirement according to the box. It also has vitamin E, B1, B6, omega-3, and folic acid.
The b12 is the cyanocobalamin. Is one better than the other? I'll also request a B-12 test.

Folic acid is a synthetic analog. It interferes with the function of natural folates. It's best to take methylfolate.

Here's a video from Dr. Ben Lynch with more information on folate.



With regards to B12, methylcobalamin and adenosylcobalamin are the two natural forms of B12. There are several supplements available which contain both of these forms. Cyanocobalamin is difficult for the body to use and has lower retention than the other forms. 6 µg is a pretty small amount. At least 1000 µg/day or more is needed to correct a deficiency.

A full assay for B12 deficiency includes tests of B12, red blood cell (RBC) folate, homocysteine and methylmalonic acid (MMA). You may wish to read some of the posts in the following topic for more information.
http://www.thisisms.com/forum/natural-a ... 24857.html

By the way, if you're going to get tested for B12 deficiency, then it would be best to go off your B supplement for a few days prior to the test.

[xylogirl10]

Thank you so much for these tips! I will follow up.

[lyndacarol]

Welcome to ThisIsMS, xylogirl10.

Migraine headaches (as well as vision disturbances and tingling) are associated with several conditions, including magnesium deficiency, vitamin D deficiency, and vitamin B 12 deficiency. Ask the neurologist you will see in a few weeks to order blood tests in order to rule out these possibilities. AND, be sure to request your own copy of any test results. For example, your vitamin D level should be at least 40-60 ng/mL – vitamin D experts and some neurologists recommend that the vitamin D level should be 80-100 ng/mL in patients with neurological symptoms.

Magnesium deficiency can cause migraine headaches. Dr. Carolyn Dean (http://www.drcarolyndean.com), author of The Magnesium Miracle, has stated that most Americans are deficient (page 215). She reports that magnesium is used in hundreds of reactions in the human body, and that it is virtually impossible to consume too much magnesium. She has often referred to the following research:

Why all migraine patients should be treated with magnesium. (2012)
A Mauskop, J Varughese
https://www.ncbi.nlm.nih.gov/pubmed/22426836

But there are often differing opinions in research:

Should magnesium be given to every migraineur? No. (2012)
A Pardutz, L Vecsei
https://www.ncbi.nlm.nih.gov/pubmed/22426837

Magnesium works together with vitamin D to create the active form of the vitamin D hormone, which is used in every cell of the body. If your magnesium level is inadequate, or your vitamin D level (as measured by the "25-Hydroxy D" blood test) is deficient, any system in your body (including the nervous system, vascular system, etc.) can be impacted and function will be impaired.

Follow the advice from NHE about vitamin B12 testing.

If you have deficiencies, taking standard supplements (which are designed to maintain a level) will not be adequate to correct the deficiency. (Simply doubling your standard vitamin D supplement may not be enough. GrassrootsHealth, http://www.grassrootshelp.net, offers a chart estimating the daily dosage required to raise a particular level to an optimal level.) You should be tested for your baseline levels, discuss with your doctor the appropriate supplement, and retest after 3-6 months to be sure you have reached and maintained the optimal level (not just the minimum level!).

[xylogirl10]

Thank you both so much for taking the time to make suggestions, explain the tests, and what I might need to do after. It would be awful if I didn't do something right that could potentially help me and really appreciate that you are sharing your knowledge. After the scans for lesions were clear two years ago, my doctor mentioned that I should get another scan in a few years if I still have horrible migraines, just in case I do have MS. I have been so worried. Hopefully, it is just a deficiency.

How long do these tests take to process? I think I will ask my local doctor next week to do the tests (and I'll stop the supplements until then), as I can only see the university neurology center every few months. If I can get the results back in time, it might affect my treatment.

My pain level with migraines and sleep have improved since taking the magnesium. A nurse at my college health center suggested it and I'm so glad she did. It seems like the magnesium pills I take are the better kind (I guess I'll find out for sure after the tests), but not the B-vitamin supplements. I am a little irritated by this.

[lyndacarol]

How long do these tests take to process? I think I will ask my local doctor next week to do the tests (and I'll stop the supplements until then), as I can only see the university neurology center every few months. If I can get the results back in time, it might affect my treatment.

It is possible to order a 1-time vitamin D test kit from GrassrootsHealth for a $65 fee (+ $5 shipping). This at-home test requires pricking a finger, placing a few drops of blood on the blood spot card, and mailing it in (you get results within a week).
https://www.grassrootshealth.net/proj-welcome/?pr=95284

How to Complete Your Home Vitamin D Blood Spot Test (5 min.)
VitaminDaction Project by GrassrootsHealth


A similar in-home vitamin D test kit is offered by the Vitamin D Council for $50:
https://www.vitamindcouncil.org/testkit/

I have used the GrassrootsHealth in-home test as well as a Vit D test at a lab, which required my doctor's order (as I recall, the local lab results were emailed within a week, also).

It has been a while, but I think the serum magnesium test results came within a week or two. Neither of these tests is unusual; neither one requires being sent away for processing.

I think your local doctor should be able to order these blood tests and get the results back to you quickly.

[xylogirl10]

I'm glad they will have a quick turn around. Thanks! I actually recently moved to Europe, so I don't think I can order the kits. My neuro said testing is a good idea and she'll talk to the insurance company so they cover it. I'll pop by my doctor's office today and see which tests they can do.
I hope it is okay to ask a few more questions. I poked around the site a little more and looked into the best available forms of certain supplements, but I feel a little overwhelmed:
I might be jumping to gun here, but I have several risk factors for low B-12 (hormonal BC, vegetarian, and even some of the meds I take for migraines), so I'm already wondering how to access quality supplements. My mother just told me that she had to get B-12 shots when she was my age, so there might be something genetic going on. Is the GrassrootsHealth organization just the place people on here trust in terms of quality or is there an affiliation with this site? I so far haven't found an international equivalent. I'm dismayed that the fish oil with B-vitamins I was taking, which was recommended as the top brand by my doctor, doesn't have the best absorbable forms. I'm a little worried that a test will reveal something and will have trouble finding the right type of supplements. How do you find which supplements are the best?

You guys seem to have a lot of experience with test results and this is all new to me. I didn't realize there were minimal levels and optimal levels. Would it be okay if I post mine when I get them back?

[lyndacarol]

I'm glad they will have a quick turn around. Thanks! I actually recently moved to Europe, so I don't think I can order the kits. My neuro said testing is a good idea and she'll talk to the insurance company so they cover it. I'll pop by my doctor's office today and see which tests they can do.
I hope it is okay to ask a few more questions. I poked around the site a little more and looked into the best available forms of certain supplements, but I feel a little overwhelmed:
I might be jumping to gun here, but I have several risk factors for low B-12 (hormonal BC, vegetarian, and even some of the meds I take for migraines), so I'm already wondering how to access quality supplements. My mother just told me that she had to get B-12 shots when she was my age, so there might be something genetic going on. Is the GrassrootsHealth organization just the place people on here trust in terms of quality or is there an affiliation with this site? I so far haven't found an international equivalent. I'm dismayed that the fish oil with B-vitamins I was taking, which was recommended as the top brand by my doctor, doesn't have the best absorbable forms. I'm a little worried that a test will reveal something and will have trouble finding the right type of supplements. How do you find which supplements are the best?

You guys seem to have a lot of experience with test results and this is all new to me. I didn't realize there were minimal levels and optimal levels. Would it be okay if I post mine when I get them back?

My thoughts on your comments:

(1) "recently moved to Europe, so I don't think I can order the kits."

I don't know how it can be done, but I think there must be some way to do it. GrassrootsHealth has created a worldwide database of vitamin D levels.
(By the way, in Europe and Canada the serum vitamin D is measured with the unit nmol/L; in the US, ng/mL is used.)
CONVERSION between nmol/l and ng/ml:

http://www.unc.edu/~rowlett/units/scale ... _data.html
Vitamin D (25-Hydroxyvitamin D): ng/mL X 2.496 = nmol/L

(Since Math is not my strong suit, I use 2.5 as the conversion factor: multiply nanograms by 2.5 to get nanomoles.)

(2) "best available forms of certain supplements"

Vitamin D3 (cholecalciferol) is more effective than vitamin D2 (ergocalciferol)

The methylcobalamin or hydroxocobalamin form of vitamin B12 is more readily available to the human body than cyanocobalamin (which must be decyanated by the body before it can be used). Cyanocobalamin is the cheapest form and is frequently found in B12 supplements. (B12 shots available in doctors' offices in the US are the cyano form. I understand that the B12 shots given in Europe are the hydroxo form.)

Sublingual tablets (dissolve under the tongue) are absorbed directly into the bloodstream; whereas, tablets that are swallowed go through the digestive system and may not be absorbed as well.

There are MANY forms of magnesium (TIMS member, jimmylegs, is our resident expert on Mg – she recommends magnesium glycinate); I have used glycinate, but recently switched to magnesium threonate.

(3) Is there an affiliation between GrassrootsHealth and this site?

There is no affiliation. GrassrootsHealth (http://www.grassrootshealth.net/ ), a nonprofit public health promotion organization, works to solve worldwide vitamin D deficiencies and improve health globally. Perhaps you could contact them concerning "an international equivalent."

(4) Would it be okay to post test results here?

It is your personal choice. Many of us are willing to share our test results; for instance, in January my vitamin D test result (24 ng/mL) was frankly deficient.

[NHE]

I'm dismayed that the fish oil with B-vitamins I was taking, which was recommended as the top brand by my doctor, doesn't have the best absorbable forms. I'm a little worried that a test will reveal something and will have trouble finding the right type of supplements. How do you find which supplements are the best?

I don't think we had discussed the fish oil supplements you're using. You'll want around 1-2 g/day of omega-3 fatty acids. Note that this will be different than the total amount of fish oil in the capsule. In addition, you'll want to evaluate the quality of the fish oil. You can do this by poking the capsule with a needle and tasting the oil. It's OK if it tastes a little fishy, that's normal. However, if it reminds you of the stench of the floor in a fish market, then the oil is rancid and you need to get a different brand. The omega-3 fats in fish oil are easily oxidized and consuming oil in this condition can make one sick.

If you can't find the supplements you need in Europe, then there are US companies which ship internationally, e.g., http://www.vitacost.com though the shipping and import tariffs might be high.

[xylogirl10]

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