While I'm all for supplements, and am a HUGE supporter of Vit D3 and other important vitamins (and we also eat all grassfed beef, farm fresh organic grass fed chicken eggs etc), I hope that woman that put that post does not ignore her daughters clivioaxial angle, as that much anterior brainstem compression can be deadly if she is involved in a car accident, or slip and fall etc. I have not searched for her post, but she can also take her daughter to see Dr. Menezes in Iowa City, who is a pediatric expert in this exact issue. Also, 50k iu/day for Vit D3 is high. You should have your primary care doctor or pediatrician test the D3 levels. Vitamin deficiency is also common in the Ehlers-Danlos population. I do not have Chiari or EDS, but am Vit D3 deficient. I take a prescription of 50k once a week, and 5k the other 6 days as prescribed by my doctor. I then have my levels checked every 4 months to make sure they are still within the normal range.
Thanks for all of the info. She takes D3 now but stopped the chelated mag long ago since life had become pills, appt.'s and treatments and nothing was helping prior to the surgery.
So, I can read more about those and perhaps retry with K added in. Looks as if I have a lot to research.
Thanks for the diet tips. We've always been foodies here. She eats great: lots of greens and proteins. No artificial stuff or trans fats. Sometimes she'll have a decaf something with friends at a coffee place or frozen yogurt at the self serve. Who knows what's in that stuff. Oh, and when we travel we eat out. I try to go over as many menus as possible prior to our trips but since it's not prepared at home, you still never know.
Thanks again and I will get reading soon!
Alec Hohnadell said:
Hey also look at what this lady posted the other day:)))))
Those of you who've been here for a while are probably familiar with the fact that I love to research. I love my children even more than that. So when my 7 year old daughter started getting migraines this year shortly after my Chiari diagnosis, I started searching for answers.
One migraine in April, some leg and back pain before and after, sleeping issues, attention problems, constipation, a couple of "accidents" where she wet her pants, vision problems (blurry, weird shapes or colors), dark circles under her eyes, and constantly dry lips.
In October, while I was in North Carolina seeing a Chiari specialist, she had a bad enough migraine that she threw up. I'm a protective mother in the first place, being across the country and not there while she was in pain about killed me. As soon as I was home, we set up an appointment with our family physician. He's a nice enough guy, and although he thought an MRI was excessive, he agreed to order one. It came back normal, except for a very small pineal cyst. My physician called and left a message, advising the pineal cyst wasn't enough to cause problems. I, of course (now that I've had experience with Chiari and radiologists), took my copy of the MRI home and immediately noticed a problem.
Although my daughter, Jordan, has a small herniation of only about 3mm, and her foramen magnum is mostly open, she has a very sharp clivo-axial angle. The clivo-axial angle is the one at the top of the spine, the clivus is the triangular bone, and the angle it makes with the odontoid (finger shaped bone at the top of the spine) is called the clivo-axial angle, or CXA for short. A normal clivo-axial angle is 165 degrees. Jordan's is 105 degrees. Anything under 135 degrees is considered a sure fail for a posterior fossa decompression (Chiari surgery), and anything under 145 degrees will have some neurological symptoms, to include headaches. Especially headaches in the forehead.
So now I know what the problem is, I go about finding a specialist, and we've found a great one in Phoenix. Only problem is our appointment (we're both seeing him), is in March. So in the meantime my daughter is suffering, and her headaches continue to worsen. At the end, it was a two week headache that just wouldn't go away, although at times it was less painful than others. We tried a cervical collar, not looking down, no extra activities, drinking a lot of water, changing pillows, epsom salt baths, ibuprofen, tylenol, and nothing was working. In the early part of November a friend from this site sent me a video about Vitamin D supplementation. This video changed my life.
http://www.youtube.com/watch?v=xF24xmJQK1k
I would encourage anyone with headaches, or a loved one with headaches, to watch this video. I immediately started supplementing with higher doses of Vitamin D3, and giving my daughter a higher than normal dose as well. After reading two books,
http://www.amazon.com/MIRACULOUS-RESULTS-EXTREMELY-SUNSHINE-EXPERIM...
And
http://www.amazon.com/Vitamin-K2-Calcium-Paradox-Little-Known-ebook...
I realized the Vitamin D3 needed to be combined with Vitamin K2, and that's when the magic started to happen. My pain, for the most part, went away. And even better, my daughter stopped having headaches. For six weeks now, she hasn't had head pain of any kind, no fevers or hot forehead like she used to, no leg or back pain, nothing. Occasionally she'll get a stiff neck or back from sitting in a position for too long, but it's still nothing like we were going through before. No accidents, and the constipation isn't as bad as it used to be (she's going several times a week now)
So if you decide to read the books, although the first one is interesting, the author is not a doctor, and this is his personal experience with high dose Vitamin D supplementation. The second book though, not only discusses the importance of Vitamin D3, it talks about how essential K2 is if you're using higher than normal doses. And, it goes into some very extensive background about diet and nutrition today as compared to that of a hundred years ago.
Basically, there are nutrients only available in specific foods that are typically not eaten in a normal Westernized diet. Vitamin K2 and Vitamin A-Retinol are found in grass fed organ meat (liver, heart, tongue, brain, etc), grass-fed cow milk, pastured chicken eggs (grass fed chickens), and in smaller amounts grass fed meat. Vitamin K2 (MK-4) is also found in Gouda and brie, pate, and fish eggs. Vitamin K2 (MK-7) is found in Natto (fermented soybeans). Vitamin K2 is necessary to move calcium from the bloodstream into the bones, and NOT into the muscles, tendons, and arteries. So if we're not getting Vitamin K2 or Vitamin-A Retinol what happens? Per Dr. Rheume-Bleue, the author of the 2nd book, says we have birth defects, smaller jaws with crowed teeth and high palates, and poorer health altogether. Dr. Weston Price, a dentist back in the 1930's, did research and found traditional populations not exposed to a modernized diet, did not have crowded teeth, and rarely had cavities. Once these populations started eating modernized food, they then had a smaller lowest portion of the skull (possibly a smaller posterior fossa in conjunction with a smaller jaw and crowded mouth), and other health problems not inherent in their parents. There's so much more information, if you can loan the book from the library, or purchase it, I'd highly recommend it.
At any rate, I'm now taking 50,000 IU of Vitamin D3 every morning, with a Vitamin K complex vitamin which has 2000 mcg of K1, 2000 mcg of K2 (MK-4), and 400 mcg of K2 (MK-7). I also take a 25,000 IU Vitamin A-Retinol, but I'm still researching that one, so a smaller dose might be better, at least to start out with. There are some studies out there that attribute high Vitamin A with a variety of problems, so here's a helpful page:
http://ods.od.nih.gov/factsheets/VitaminA-HealthProfessional/
It discusses the Upper limits and recommended dosages, 10,000 IU is the tolerable upper limit for adults using Vitamin-A Retinol.
In reference to the YouTube video, I think proper sleep is essential, and I would suggest everyone get a sleep study. Eighty percent of Chiari patients have sleep apnea. Broken sleep, or lack of REM sleep means the body is not healing at night like it needs to, and pain is the result. Every Chiari patient I've spoken with is also deficient in Vitamin D. So, our system for fixing headaches has been:
1. Getting a sleep study, and wearing a CPAP every night if you have sleep apnea. If you have a lack of REM sleep, you could possibly be having adrenaline spikes from dysautonomia. This video discusses this problem, and the solution is a beta blocker:
2. Supplementing with a quality high dose Vitamin D3 (I use Solgar) and Vitamin K (I use Life Extension Super K Complex).
3. Supplementing with a chelated magnesium (I just started on Country Life), and using magnesium oil at night on the painful parts (neck, legs, back, arms, etc). Epsom salt baths are helpful as well.
4. Supplementing with Vitamin A-Retinol, at a dosage you're comfortable with.
5. Increasing protein intake. Your body wants to repair itself, and protein is amino acids packaged in a tasty form. Some suggestions are grass-fed whey, organic free range meat, organic pastured eggs, etc. Another option is collagen supplements, gelatin, and supplemental amino acids, although I'm not sure how much those work. If anyone else has suggestions, I'm open to hearing them, we're looking for something easier to give the kids, they don't love meat or eggs unfortunately.
6. Eating more fruits and vegetables. I have a smoothie maker, we make berry banana smoothies for the kids, and I have spinach/banana/berry/carrot smoothies with a scoop of protein powder, cal-mag-citrate powder, and powdered Vitamin C.
There's so much more, and I wish I could just give you all of the information in my head. If you have any questions, please ask. But really, getting sleep, supplementing with nutrients we aren't able to get from food, and increasing protein intake are all good ways to feel better.
As a side note, Vitamin A-Beta carotene from carrots is not absorbed well in humans. It is discussed in the second book by Dr. Rheume-Bleue I believe, but basically humans have adapted to getting nutrients from animal products, and some fruit and vegetable sources are not metabolized as well.
As for my daughter, I give her a chewable D3/K2 (MK-4) in the mornings, and spray magnesium oil in the evenings on her back and legs. I also supplement the chewable with a liquid Vitamin D3, so she is taking 10,000 IU of Vitamin D3 a day and 2000 mcg of Vitamin K2 (MK-4). She also takes an epsom salt bath a couple of times a week. I split a Vitamin A-Retinol 10,000 IU capsule in her and her sister's smoothies twice a week, so her weekly dose is around 9,000 IU, simply because I can't get all of the liquid out of the capsule. I've tried a chewable cal-mag wafer, but they didn't really like it.
The spray magnesium can be itchy/tingly/stingy at first, this is helped greatly with lotion, and if the stinging doesn't go away in a few seconds, I wipe it off with a wet washcloth. On myself I just leave it there, and I've noticed now that I use it consistently, it rarely itches any more. A word of caution, it will dry out your hands if you use it a lot, so you'll want to wash your hands or use a bunch of lotion.
Here are the supplements we use:
http://www.pioneernutritional.com/pioneer-products/d3-k2-spearmint....
http://www.seekinghealth.com/liquid-vitamin-d-drops.html
http://www.solgar.com/SolgarProducts/Vitamin-D3-Cholecalciferol-100...
http://www.lef.org/Vitamins-Supplements/Item01724/Super-K-with-Adva...
http://www.vitaminshoppe.com/p/country-life-chelated-magnesium-250-...
http://www.nowfoods.com/Vitamin-A-25000-IU-100-Softgels.htm (they also make a 10,000 IU version)
http://www.vitaminshoppe.com/p/life-flo-health-care-pure-magnesium-...
Full disclosure, you should talk to your doctor before adding supplements or changing your diet. I am not a medical professional. 50,000 IU Vitamin D3 is much higher than the tolerable upper limit as defined by the USRDA, and high dose Vitamin D has been associated with high levels of calcium in the blood stream. I would suggest reading the book and doing your own research before considering this as a course of action for you or your family. Here's an article from the Vitamin D council regarding supplementation:
http://www.vitamindcouncil.org/about-vitamin-d/am-i-getting-too-muc...
And here's one regarding Vitamin D and Vitamin K2
http://articles.mercola.com/sites/articles/archive/2013/10/19/vitam...
And another:
http://www.lef.org/magazine/mag2008/mar2008_Protecting-Bone-And-Art...
As for the effect, after taking my morning dose of Vitamin D/A/K, I notice a sense of relaxation within 20 minutes.
If anyone decides to do this, I would love to hear the results, I don't think it's a coincidence that my daughter and I both have improved significantly with supplementation.
To finish, here's my daughter's MRI:
Tags: D3, K2, Retinol, Vitamin, apnea, headache, migraine, sleep
Mandy posted about headaches.....