Ever heard of developing neurological symptoms on a vegan diet?

edited September 2017 in General Discussion

I am not expecting anyone to be a doctor, but I am curious if anyone has heard of what I have been experiencing and please don't get political over my dietary choices.

I have been mainly vegetarian most of my life and often that included months on end of strict plant based eating... but about 2 years ago I went strict vegan after a couple years of a more omnivorous lifestyle that included even small amounts of meat on occasion. I suppose my body can change over the years, as 1 month into it, I would feel weak and shaky, like I needed to eat, but I would eat and I wouldn't feel better. I would feel sick until I awoke the next day. This never happened to me in the past. This seemed to happen nearly daily for awhile, and I would get migraines and just generally felt unwell.

Now, I want to preface that I don't eat much vegan junk food, as I am a gardener and grow a lot of my own fruits and veggies- just an FYI, but I do avoid wheat and oats as they cause my body to hurt- I get bad inflammation in my back where I have had some disc issues in the past.

A few months into my strict vegan diet, I woke in the middle of the night several times thinking there was an earthquake or that my bed was vibrating, but it was actually me, shaking. This happened only occasionally, and I began taking a good quality sublingual B12 tablet- although, I had been taking a Bcomplex the entire time and drinking fortified plant milk everyday. My symptoms seemed to go away, except an occasional shake in my right hand that would only last a second and I felt depressed, often agitated and in general exhausted and weak. I was going through some emotional stress as well, but not sure if it was the emotional stress making it worse or if the physical symptoms were causing the emotional stress.

I would exercise- at the very least walk 2-5 miles a day, do yoga and sometimes run if I had the energy. I felt hungry all the time and never satiated and I couldn't lose 1 pound for the life of me.

I eventually quit taking the B12 tablet after a blood test showed really high B12- the doc said to ease up- I didn't think it was necessary, but figured I got enough in my fortified foods anyway. 3 weeks later, the shaky feeling hit me again and became much worse and day after day my symptoms increased- It was more internal as externally the shaking was subtle, but inside full body vibrations, weird electrical feelings in my chest, doctors and friends could feel them if they rested their hands on me for a minute- Cramps would occur in both feet at the same time, muscles would twitch in my thighs, calves, arms, eyes, and cheeks... I started seeing shadows out of the corners of my eyes... like insects. I know... I sound insane! I knew it was a hallucination, so I kept my cool- but it freaked me out. I rarely drink, but found that drinking even 1-2 drinks of alcohol would send my body into full vibration mode for hours- I kept trying to manage the anxiety these scary symptoms were causing, lots of yoga, meditation, low stress environment, etc.

I went to ERs, Docs and Neurologists, and did have a nerve and muscle test, but it didn't show anything. Blood tests didn't show much except slight potassium and vitamin D deficiency and mild anemia of a heredity source, not dietary. The docs won't run anymore tests- treated me like I was mentally ill. They even gave my some anti-depressant that sent my body shaking worse than ever... It's been stressful to say the least. I just had to remind myself that whatever was happening wasn't killing me although it was frightening.

Anyway, I started tracking my nutrition in cronometer, and maybe because I eat a low cal diet- not sure- I realized though that I was not getting many RDV of B vitamins, iron, zinc, calcium, protein etc. I actually broke down and ate non-vegan food at first, I was freaked out and willing to try anything- just a little bit of fish and some eggs. I literally dropped 8 pounds that week that I incorporated a small amount of animal products. However, I just can't eat that on a regular basis as my conscience gets the best of me. I have since been eating 98% plant based- occassionally a bite of meat or an egg, but very occasional- however, I have found some good hacks for me that have balanced my diet a lot better... I have realized it can be tricky to get drv with low calorie diet of 1200-1400 and a restriction of most grains- anyhow, I am happy to report, I am much better. I still can not drink alcohol without terrible vibration feeling and I have mild twitching and cramps and often a mild shaking or pulsating feeling throughout my body... but it actually is much better. And this happened since I changed my diet about 2 months ago using cronometer- I have also lost 13 pounds altogether and have strength and energy to work out everyday, which I have not had for years- so that is great! But, I am still perplexed at how these neurological problems surfaced, were they nutrition related... my doctors know nothing about nutrition- because I look healthy, they don't take me serious. It's been frustrating- thousands of dollars later and I am still wondering what just happened.
Have you ever heard of such a thing?

Comments

  • I can relate to some of the things you shared. I too was eating an almost 100% vegan, severely calorie-restricted diet. For almost 2 months I wasn't using Cronometer, I was only counting calories. It wasn't until I started using my diary that I learned how depleted my vitamins and minerals actually were. During that time I lost no weight at all, and would also sometimes see shadows/bugs in my peripherals. I never experienced any shaking, but probably most indicative of my vitamin deficiency was the numbness and tingling I would get in my legs. I got bloodwork done eventually and my glucose is normal (for a while I thought I was diabetic), but I was low in vitamin D and sodium (I was chugging a ton of water at the time).

    Anyway, I've been eating about twice as much since then and those symptoms have gone away. I haven't weighed myself. I am also vegan and don't eat grains or anything too starchy and I'm still not hitting all my targets, but I'm also still undereating.

  • @Greenflower

    I'm very sorry to hear about the challenges you have been having and glad you followed up with physicians. I would suggest tracking your symptoms, along with your food intake, in Cronometer (use the "Add Note" feature). If your symptoms persist, I think it's important to continue seeing your MD to get to the root of it.

    A low B12 can be a cause of neurological symptoms on a plant-base diet, so I'm glad you investigated this. It might be helpful to take a multivitamin, multimineral supplement to see if this provides additional benefit.

    Lastly, you may wish to connect with a dietitian in your area who specializes in plant-based nutrition. If you are in Canada, I know the name of one. ;)

    Kind regards,

    Susan Macfarlane, MScA, RD
    Registered Dietitian Nutritionist
    cronometer.com
    As always, any and all postings here are covered by our T&Cs:
    https://forums.cronometer.com/discussion/27/governing-terms-and-disclaimer

  • @Greenflower - which nutrients in particular were you eating far less than the RDA? I'd start with those and see if there are any known links published.

    For example, I know for me that a lack of magnesium causes me to have leg cramps, females in my family are prone to anaemia (so I need to get a decent amount of iron) and that boosting my B vitamin levels is necessary for me to not feel exhausted all the time. These are all things that I could have found out had I researched "symptoms of magnesium/iron/vitaminB deficiency".

    Congrats on solving the issue through your diet though, even if you don't know exactly what it was that fixed it :smiley:

  • Without knowing which food has been eaten there is no way to indicate anything. Its very easy for unexperienced vegans to eat wrong. You can get any needed nutrient plant based, but you need to balance yourself, widely outside the habits, and this is the problem. With our "old habitual" diet we had an instinct what to eat. With vegan diet its very challenging, and you can come into the feeling that you have to eat to much. If you compensate this or better if you try to control this, you start eating insufficient amounts. And this comes additionally with the uncontrolled nutrient balance. I recommend a basic mix of almonds, oat flakes, veggies mix, fruits, dates, avocados, soya-products (NGMO), quinoa and yeast flakes to compensate B-complex deficiencies, AND flax seed oil to balance the Omega 6/Omega 3, ratio, which is unbalanced in the US up to 80:1 and in europe up to 20:1. And it should be best case 1:1. In order not to "overeat" to meet the calorific value you need, it felt easier for me to eat more protein and fat. It takes time to get a relaxed vegan position.

  • Have you done any genetic testing? My 23andme test turned up an MCAD deficiency.

  • No, I have not done that yet LH1

  • LCHF, good point. That's excatly what I did- I looked up all these things I was routinely low in and realized most of them affected the nervous system and muscles. I am feeling better now- it's just so strange. I did not have a B12 deficiency... So, that wasn't it. Nothing really showed up in the blood work, nothing significant. Once I upped my intake of all vitamins I started getting better. I get almost 100% of all recommended values daily- even with my low cal plant based diet now. If I am short on something I take a supplement. The only things I am struggling to get from my diet are choline, folate and biotin. Prior it was all B vitamins, magnesium, zinc, protein.... It's no wonder I felt so awful all the time. I do feel like a new person lately- wish I could get rid of the pulsating sensations completely- maybe it will take time to heal.

  • Sunshine, just a couple hacks I have found to up my nutrition on plant based diet for a few things I was having difficulty getting... pepitas have as much zinc as beef and lamb plus other good nutrients. I make a fruit bowl with a variety of nuts and seeds and include these each day- pour fortified plant milk on top and eat it like cereal... I usually get around 40-50% of my nutritional needs from this. I also add them in a big raw salad I have almost everyday too! Sunflower seeds have some B vitamins and I think high in magnesium + other nutrients and Moringa powder- 1 tablespoon is 70% of the daily iron value + some protein and other nutrients of course. I grow Moringa- it's awesome that I've found something to help me, especially during my cycle as I tend to be low iron- always have been.

  • Have you tried taking a magnesium supplement? I found this on Livestrong "Early symptoms of magnesium deficiency can include fatigue, irritability, insomnia and muscle tremors, twitching or shaking..."

    I started taking Natural Calm a few weeks ago cause I had big time anxiety and thought it might help (even though I seem to be getting enough in my diet according to chronometer). Maybe I wasn't absorbing enough from food cause it has really helped. I only take 1/4 tsp twice a day mixed in water (serving size is 2 tsp). It has helped my anxiety. As a side benefit it's also completely stopped my palpitations and greatly reduced my restless legs and hot flashes. Who knew it could do so much. I looked it up and it's involved in about 300 processes in the body!

    It's worth a try.

  • I forgot, here's a link to a Wellness Mama post "Are You Low on Magnesium?"

  • One other consideration about B12 is that there can be "analogues" or fake B12 on a vegan diet (found in spirulina and chlorella, for example). The B12 found in these products is not actually active and can interfere with the absorption of active B12. What's even more frustrating is that inactive B12 can make your bloodwork look optimal.

    For this reason, I recommend all vegans take a daily B12 supplement of at least 100 mcg per day (or 1000 mcg 2-3x per week) and don't take large doses of inactive B12.

    Susan Macfarlane, MScA, RD
    Registered Dietitian Nutritionist
    cronometer.com
    As always, any and all postings here are covered by our T&Cs:
    https://forums.cronometer.com/discussion/27/governing-terms-and-disclaimer

  • Susan, that is a great recommendation. I had been taking 10,000 mcg of methylB12 in a lozenge daily and my B12 was very high. So, that was not the culprit- although that was the first thing I thought of! I had it tested twice and also had a test where they test how much is actually being used by the body- I think it's called an MMA test. It's so strange. Whatever happened to me, it's getting better- I still have symptoms, but not as intense. Still in a fog over what happened though... I think it really is diet related only because now that I am careful to get nearly 100% of my daily values, I am getting better. Alcohol sets off my entire nervous system though- just one drink. I went to dinner with a friend and had a very weak alcoholic beverage- vodka in soda water with a squeeze of lemon and lime. I ate a big meal, ended up hiking a mountain and going for a job afterwards and my arms and legs started vibrating and buzzing all night. Everytime I drink this happens. I don't really drink alot, just social- like one with dinner 1 every week or 2. So annoying.

  • jackyalsi You know, they didn't test my magnesium levels, but I read the same thing you describe and also that low magnesium can cause heart palpitations, which was happening to me. I even had an abnormal EKG while the palpitations and shaking was happening in the ER, though further heart tests showed I am perfectly healthy. Another weird thing was at the peak of these symptoms my resting heart rate slowed down between 40-50 and my blood pressure was low and I kept getting faint when standing from a kneeling position. I have since upped my magnesium a long with everything else.... I'm not sure what one thing is helping me or if it's a combo of nutrients. Since I have been so meticulous about my diet, I realized I eat a ton of raw food everyday- tons of nuts, seeds, leafy greens, fruit, fortified plant milk and tofu or tempeh... occasionally I will eat a piece of fish, but I don't really care for it.

  • How much fat are you eating each day? I'd go up to .4g/lb bodyweight if your intake is low. Are you getting enough omega 3s?

  • Fat is a very under utilized nutrient. Since the standard american diet tries to diminish the usage of fats we are getting more and more neurological problems. Along with macular degeneration. You might look into getting more fat into your diet and seeing how you feel. Olives and oil, coconut and oil, avacado's, cheeses and eggs all have high amounts of good fats in them. Rather than trying to loose weight if I was you I would get to feeling better first.

  • I read your post via google and had to sign up. I'm not a vegan but, have had the same symptoms. I've been to naturopaths for this issue. My B12 is high as well as it is not going into the Cells. So you are B12 deficient. Also you most likely have a lack of Magnesium and other minerals. I have leaky gut so, this does not help with absorption. Please see a naturopath doctors know nothing about nutrition. I went to neurologists to and was on an anti depressant they put me on and that was not the solution only made me worse.

    I had vibration, tingling, numbness, burning, weakness, twitches etc. Its getting better. I don't have vibration and all the rest only very slight tingling now which is great.

    Supplement with B12 its important! further to this I have methylation issues to so, need to supplement with SAMe to get it going again to help my body with B12. Please get a naturopath determine this as you need to do a specific test for methylation. Don't take SAMe because I told you on here.

    I hope you are feeling better. I know how traumatic this is. I've been trying to find a solution since 2013. It has been a challenge.

  • @vstar

    I'm sorry to hear about your struggles. Your symptoms certainly do sound like a possible vitamin B12 deficiency. Glad that things are improving.

    Many vegans actually opt for injections of B12 over oral supplementation. Injections will by-pass the gut and ensure that absorption occurs.

    Kind regards,

    Susan Macfarlane, MScA, RD
    Registered Dietitian Nutritionist
    cronometer.com
    As always, any and all postings here are covered by our T&Cs:
    https://forums.cronometer.com/discussion/27/governing-terms-and-disclaimer

  • Wow, I’m unfortunately going through nearly the exact same symptoms now.. internal tremors and nervous shakiness. Always been healthy and have never dealt with anything like this before! Blood test showed slighty low electrolytes nothing else. I was strict vegan for 4 years but now starting to include some fish and eggs. Ive supplemented b12 over the years and every few months even got b12 injections. However I’ve never tested my b12 levels. Trying to figure this out, very concerning!

  • edited October 2018

    It's probably nothing at all to do with this but I have Vasovagal syncope, which basically means your brain is not regulating your blood pressure perfectly, especially when you go from sitting to standing. My first symptoms were dizziness, a feeling of shaking inside, people said my lips were pale, my fingernails sometimes looked almost blue. My doctor told me it was important to stay really well hydrated and to drink water all the time. He asked if I had a lot of salt and at that time I'd stopped eating all junk food and only ate fresh, not adding any salt. So he told me to start adding salt back in. Hydration and salt are really important for your blood and blood pressure and electrolyte balance and keeping your blood hydrated (I'm sure that's not the medical term, but your blood needs both water and salt to keep your veins "full" (sorry, a bit gross sounding) and that helps your blood pressure stay more stable).
    I felt TONS better. The dizziness and weird feelings stopped but anytime I slacked off on drinking water I felt less well. Also if I didn't eat for awhile, was dehydrated and walking around a lot I started to feel somewhat shaky again and would have to sit down and drink water and sometimes Sprite (I don't drink that now, lol) helped. Like I said it's probably nothing to do with people's issues here but some of it sounded a little familiar to me.

  • @Aaron_joseph7

    Sorry to hear you are struggling. Electrolytes can be low or high if the kidneys aren't working as they should, or (more likely), you have under or over hydrated. It sounds like you need some more medical workup to ensure that blood pressure is normal and to figure out what could be going on. I'd also take a close look at stimulants, such as caffeine, to make sure that you're not consuming excess amounts.

    Kind regards,

    Susan Macfarlane, MScA, RD
    Registered Dietitian Nutritionist
    cronometer.com
    As always, any and all postings here are covered by our T&Cs:
    https://forums.cronometer.com/discussion/27/governing-terms-and-disclaimer

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