Newbie alert! Who here is given grief about veganism/vegetarianism?

[veganepileptic]

Hi guys! I'm new here
This is a bit of a long one but I feel very strongly about this topic. I was hoping to talk to anyone who can share anecdotes about a vegan/vegetarian lifestyle with epilepsy? I know it's not exactly a scientific case study but an anecdotal one at least. I've put meds, vegan & vegetarian in caps to scroll through.)

I had my first 2 tonic clonic seizures in 2012.
I was diagnosed with epilepsy at 23 (2013) after 2 tonic clonic seizures. I had been VEGITARIAN for 6 years at that point. I began taking LAMICTAL and everything was fine. A low dose sorted me out for a long time,
I was 11 months free of Tonic Clonic seizures before I had another one (2014). I began increasing the LAMICTAL. The myoclonic, complex partial & simple partials were happening for the 11 months since the last tonic clonic but didn't raise too much concern for me. I never took it seriously (I'm an idiot for that).
My main problem with my epilepsy was self inflicted-anxiety(which I've been on meds for since I was 22), lack of sleep, excess caffeine & alcohol on the rare night out).
I became VEGAN at 23(early 2014) 2 years ago and I was super healthy & happy for a long time. Then 7 months later I got a whopper of a tonic clonic at work after a heavy session the night before. I had never been able to party like my friends but again, in my stupidity (to be fair I was 24) I pushed through it & got myself in a situation where I had to increase my LAMICTAL and 3 months later I had to drop out of a college course that I was doing because the seizure had triggered the myoclonic, simple & complex seizures in a really bad way. I couldn't right myself. At the time of that seizure I was in college and working 2 jobs (6 days a week), again stupidity.
I had my bloods checked 10 months into my new VEGAN diet and everything was perfect, in fact better than most people's.
I left college and remained working one job (ironically I work in a health shop which I've been trained for). More time off meant less stress and a return to a proper balanced diet (still VEGAN). However I began looking at working full time in a more senior position, I worked really hard for 5 months leading up to this the last 2 months before the promotion were absolutely insane hours, sometimes 14 hours a day-ergo the increase in caffeine & lack of sleep. (In this time my LAMICTAL was increased again). I began this high intensity stressful & physically active job in September. One month later in October 2015 after a work night out I had the worst tonic clonic seizure of my life. I had the seizure at work before the shop opened & the person working with me had no idea what to do & went into shock. She was out sick with PTSD for over 2 weeks. I got only 2 days off work because I needed to help cover her shifts. The first day back at work I asked for a shorter shift than 9 hours, I was given 10 hours instead-as what I feel was almost a punishment for taking time off. When the woman came back she explained that I had been having back to back seizures for 20 minutes!!! She was in shock & never told the EMTs that so I was never brought to hospital. Because of this & the lack of recuperation time I didn't even last a full month at work before I had to ring in sick after several days of being sent home from work in a taxi (literally walked to the taxi, put in & sent on my way in a daze-with 0 understanding or sympathy).
Though I wasn't told directly I was made aware that my strict VEGAN life style was being blamed for my epilepsy, I also recieved this ridiculous accusation at home from my father despite having been VEGETARIAN when I was diagnosed (after 5 years seeing cardiologists and endocrinologists!). My diet was healthier than almost everyone else I know.
I have been out sick now for over 4 months. I had my bloods checked again in January 2016- again absolutely perfect.
Since having the last tonic clonic seizure I have been put on 400 mg of LAMICTAL a day. I was on 1000mg of KEPPRA a day up until a month ago when the depression from it got the better of me, I'm almost entirely weened off it, 250 mg a day now & totally gone in 2 weeks. I've been put on VIMPAT, still increasing it. I'll have reached 200mg a day before they review. I am no better now that I was in November.
Having had my bloods checked I am 100% sure that my VEGAN lifestyle is in no way to blame for all of this madness.
My GP is ok with it having seen my blood results but does stress the need for my diet to stay balanced. My neuro seems indifferent, but it's the people in my life that disagree with VEGANISM & don't care enough to understand epilepsy that give me the most grief about my lifestyle.
I absolutely refuse to give up this lifestyle.
So long as your diet is balanced (which includes treats in my opinion) and your bloods are all good (do take B12-everyone should, VEGANS & NON-VEGANS alike) I am confident that VEGANISM is no problem. The comments from loved ones however is starting to agitate me.

 

[Howll]

I'm only going to chime in with a short post. You mentioned being on medication for anxiety, what meds? Lots of SSRI meds are known to have a rare side effect of causing/increasing seizures. That would probably have a larger factor than the veganism.

The only thing with the veganism is being careful about getting enough nutrients, but I'm assuming if you've had your levels checked and they're perfect I can't see any issues.

 

[Frink]

I am an omnivore, I have epilepsy, my dear friend is vegan, she has epilepsy. Eating animal protein did not stop my epilepsy and a lack of animal protein did not cause her epilepsy.

A healthy diet does not cause epilepsy, but being surrounded by stress inducing ignorance can cause more seizures.

 

[veganepileptic]

Thanks for the responses guys

It's taken me a solid 10 minutes to figure out how to reply ��
Thanks so much for the positivity & support you guys! I'm so glad I joined this forum!

The SSRI is Lustral, drug name Setraline. Originally the neuro thought the Lamictal would actually work well with it to help with anxiety. I tried to come down off the SSRI but it didn't work out unfortunately. What I have learnt from it though is when offered a drug like Keppra and you have a history of mental disorders say no!(for me anyway). A young neuro that I saw completely downplayed the depression by saying it couldn't possible be caused by the Keppra he said "Oh I'm a BIG fan of Keppra"-in hindsight I should have asked in that case had he ever had to take it himself.
The epilepsy nurse was a lot faster to react to it though.

I'm also lucky in that I've had a lot of training in regards to nutrition. It's definitely a pro where my job is concerned. I'm able to balance my nutrients well. The one thing I've read recently though is that AEDs can cause a calcium deficiency! I get plenty of calcium & take D2 alongside my B12 but it's definitely something I need to look into. I eat a lot of leafy greens but maybe a bit more K2 would be good as well? Worth getting started on that I guess!

 

[veganepileptic]

Ahh! *taken me 10 mins to REPLY

 

[Howll]

Yeah, I was put on Sertraline and after three days had a seizure. Considering how rare my seizures are, I just thought it was too much of a coincidence. The neuro told me the same about Lamictal actually, but at least mine did say he didn't want to give me keppra because of the mood effects.

 

[Nakamova]

Hi veganepileptic, welcome to CWE!

I agree with the others. As long as your diet is well-balanced -- vegan, vegetarian or otherwise -- it's unlikely to play a role as a primary or secondary cause of your seizures. An exception would be if you have specific food allergies/sensitivities that are triggering (nuts or peppers for example), or if you have a variant of epilepsy that involves an inability to process certain nutrients (such as calcium) -- but it doesn't sound like you fall into that category.

A friend of mine found that switching to a vegetarian diet got rid of her lifelong struggle with migraines -- so if anything, a plant-based diet can potentially be neuroprotective. I assume that your vegan diet is well-balanced and that you are covering all the the bases. I'm not vegan, but I do take a vegan B12/B6/folic acid supplement since my CBC tends to run low as a result of the anti-seizure meds.

Worth noting -- standard blood tests don't necessarily catch deficiencies in some nutrients (the body can maintain proper levels in the blood while being deficient elsewhere), so folks should make extra-sure that their diets are providing everything they need. I'm a big fan of magnesium in particular; an mg-rich diet is necessary for properly metabolizing calcium and Vitamin D, and magnesium can potentially help with reducing muscle tension and aiding with sleep.

The #1 seizure trigger is fatigue, and it sounds as if that may be a big factor for you, along with stress. I hope you can focus on getting plenty of good-quality sleep and finding ways to rest and relax. No doubt your loved ones mean well, but you should take steps to protect yourself from the stress their comments and attitudes may provoke. Since I assume they will continue to be part of your life, consider trying something like meditation to help. Meditation can take the form of a few 5-minute breaks throughout the day where you close your eyes and just focus on your breathing; it doesn't have to be a big commitment or lifestyle change.

One last thing -- some members have found that merely taking their meds more times day has helped with seizure control, even when the medication is one with a relatively long-half-life (such as Lamictal). If you aren't doing so already, splitting your 400mg of Lamictal into 3 doses (morning/midday/evening) might be more effective than taking it twice a day.

Best,
Nakamova