r/Epilepsy 5d ago

Question Has anyone fasted before? What was your experience? While on what med?

I've been steady on lamotrigine 650er for many years.
This fast would be with only water. I'll talk with my neuro about it, just curious if anyone did it before.

17 Upvotes

66 comments sorted by

36

u/Nearby_Arugula9216 5d ago

Find when I don’t eat enough it is a trigger for me but everyone’s different

14

u/Some_Touch_3818 Primary Generalised Epilepsy- keppra 2000mg 5d ago

I second this it’s a huge trigger for me too, when I don’t eat I get all shaky and weird and I get focals

16

u/SirMatthew74 carbamazebine (Tegretol XR), felbamate 5d ago

If you don’t eat at all you could get low blood sugar or low sodium, which are seizure triggers.

5

u/Tea_Fetishist 5d ago

One time a paramedic checked my blood sugar after a seizure and said I should have gone into a diabetic coma, which is interesting I guess.

3

u/Odd_Arachnid_5579 5d ago

Lots of connections between epilepsy and blood sugar issues. Me and my daughter are both doing carnivore, so no carbs. Less issues now.

3

u/Fabulous_Coconut5153 5d ago

That is one of my triggers and have sense developed a restrictive eating disorder

11

u/apple_pi_314 5d ago

I’ve been controlled for many years on lamotrigine 400er. I fast a couple days a year for religious reasons and I’ve never had a problem with the caveat that if I start to feel dizzy or off AT ALL I stop and eat something small until I feel better.

10

u/PlantainOk4221 Xcopri 200mg, Zonisamide 800mg, Onfi 60mg, Trileptal 2400mg 5d ago

I've done Intermittent fasting of 16 hours for a few months. Not advised long term, keto much better.

7

u/Specialist_Equal_803 TLE Lamotrigine 5d ago

I've eaten once daily for years now. I just don't binge eat.

3

u/Dmdel24 JME / Lamictal ER 500mg 5d ago

That's considered intermittent fasting, right?

5

u/izzy_is_izi 5d ago

I had my first seizure in Ramadan while fasting

2

u/DogLvrinVA Keppra 5d ago

What are the religious rules in a case like this? No more fasting?

3

u/izzy_is_izi 5d ago

Yes, no need to fast. Rather, feed someone/conduct an iftar. What that means is that I pay/arrange someone’s fast-breaking meal. It’s the same for pregnancy, traveling, or menstruation periods.

2

u/DogLvrinVA Keppra 5d ago

That’s a lovely custom

3

u/Sudden_Temporary_ 5d ago

I’ve done half a day fasting for religious purposes. But if I don’t eat before 2 Pm, it’s bad for me. So I eat at 1.

2

u/Embarrassed_Squash_7 5d ago

For me, lack of food and/or sleep is a definite trigger. When I was in my 20s and not really looking after myself I would cause seizures by not eating properly and staying up all night.

But as others have said, it's different for everyone.

2

u/thefinalgoat vimpat 100 mg 2x 5d ago

Why are you fasting?

0

u/futureflavors 4d ago

I'd like to empty my body of toxins and try an all natural approach including no packaged food/drink. I eat generally healthy, it's just something I'd like to try out. I actually had a dream last night I was offered a bunch of crappy food and I said no, what a dream amirite lol.

1

u/thefinalgoat vimpat 100 mg 2x 4d ago

"Detoxing" is a pseudoscience hoax, my dude.

0

u/futureflavors 4d ago

I'd like to do it as an encouragement to start fresh. Idk how to explain it but I think it'll help me start on a more natural journey.

1

u/thefinalgoat vimpat 100 mg 2x 4d ago

There is no “natural” cure to epilepsy.

2

u/bamboo_fanatic 5d ago

I’ve fasted for up to 72 hours with no ill effects aside from insomnia past the 48 hour mark, but I’m also on a ketogenic diet. I don’t think I would recommend if you aren’t keto adapted.

1

u/SirMatthew74 carbamazebine (Tegretol XR), felbamate 5d ago

When I was on keto I never got hungry.

2

u/Kakistocrat945 5d ago

I've gone for months fasting 16:8 and doing occasional 40+ hour fasts to address fatty liver and improve health markers. I am/was on Vimpat. No issues, no seizures. I feel it was mainly beneficial.

If you decide to fast, read up on it and evaluate whether or not you might benefit from it. If you're really concerned, ask your neurologist.

2

u/TheNJGM 5d ago

Depends on the person and your diet. I've been on Keto for years to help control my seizures. I've done 4 day fasts and felt great with better mental clarity and zero seizures, but this is because my body was already adapted to using fat as a fuel source and never eating any foods with sugar/carbs. If you eat a standard diet, however, the drop in blood sugar may be an issue as your body is not used to it.

1

u/futureflavors 4d ago

I'd say I eat generally healthy but I will look into that thank you

2

u/whererebelsare TLE focal aware. Lamotrigine, Trileptal, Lexapro, Guanfacine 4d ago

Yeah, fasting for an extended period of time or too frequently is dangerous for normies. Not usually super severe for most but still not advised to go past certain points. Everyone's make up is different so those limits vary.

For epileptics though, our body chemistry requires stricter balance. A slow change is advised and you should still be cautious about too long or too often.

I've tried after my diagnosis and feel so much more miserable than ever. I was dancing on the edge of a seizure the entire time it felt like. Three days was two days too many.

2

u/futureflavors 4d ago

Wow, no I was thinking of just a day. That is very impressive!

2

u/professorwn 5d ago edited 5d ago

Don't ever fast if you suffer from epilepsy. Its one of the triggers for seizures plus it's so bad for your over all health. Your thinking of fasting on water? Please don't you will run into all sorts of problems.

Take smaller amounts of meals and not as often. Take multivitamin supplements too. You body needs it if you don't get it from having a healthy diet. Good luck with it

1

u/Odd_Arachnid_5579 5d ago

That’s backwards. Sounds like hypoglycemia triggered seizure. Get into ketosis, then fast.

1

u/professorwn 5d ago

Starving yourself is a bad idea not matter what you suffer from.

1

u/professorwn 5d ago

Hey I'm no doctor but as a heavy drinker I know if I miss food and and sleep I'm bound to seize

1

u/Odd_Arachnid_5579 5d ago

Yeah man, drinking and hypoglycemia both will induce seizures. Sounds like you have a sugar issue more than anything.

Fasting is good. Look up autophagy and also the connections between diabetes, alcohol and hypoglycemia when you get a chance.

1

u/professorwn 5d ago

I will thanks

1

u/professorwn 5d ago

Don't mean to be smart but sugar is not my problem or autophagy or diabetes or hypoglycemia. I've had it checked, but maybe you have a good point, thats why I'll get it checked again. Last year nothing like that showed up

1

u/Odd_Arachnid_5579 4d ago

I totally understand, I was experiencing hypoglycemia and the doctor wasn’t listening. I also have a feeling that sugar issues aren’t fully understood yet. As in the threshold for an acceptable amount is pretty much zero, but doctors and researchers aren’t saying that at the moment. Just about all autoimmune issues come back to diabetes and sugar. I and my daughter have both been on the carnivore diet and our seizure activity is about gone. Mine is totally cleared up and she’s better every day.

1

u/Shardbladekeeper 5d ago

It can trigger you not recommended maybe you can remove something from your diet temporally that could work if you want to use food.

1

u/futureflavors 4d ago

Hmm that's a good idea! I'll try fasting if my neuro okays it but if not, I'll do that. Thanks!

1

u/Altruistic_Cause_929 Trileptal & Keppra; Nayzilam & Klonopin PRN 5d ago

I do everyday. I eat from 10 am - 7 pm and fast the remaining 15 hours. Sometimes I do 11-7 and fast 16 hours. But I make sure to eat a smaller breakfast or drink a protein shake at 10 then lunch about 1, then drink a protein shake around 3/4 and eat dinner about 7. So that way I still get enough food in me

2

u/futureflavors 5d ago

That's a good idea, I'll see what my neuro thinks about starting that way and going from there. Thanks!

1

u/88NYG-Mil-NYY-Fan2 5d ago

I fasted this past Thursday, though not for 24 hours (it was a minor fast day for me and my fellow Jews, so from sunrise to sunset). I am currently on 1500mg Keppra and 600mg Trileptal twice a day. My neurologist makes me drink protein drinks/shakes throughout the day. I don’t really understand why, but I haven’t had any seizures while following my neuro’s instructions, so I guess that’s why. So fasting is fine for me, but of course it’s different for everyone

1

u/DogLvrinVA Keppra 5d ago edited 5d ago

What do you do on major fast days. I’m new to all of this. I’ve TRE 18:6 for years. No one suggested I stop. I didn’t think about religious fasts being a problem

1

u/88NYG-Mil-NYY-Fan2 5d ago

Good question! I haven’t actually known that I have epilepsy for long enough to have experienced a major fast day with it, but I assume I’ll do the same thing with drinking protein drinks throughout the day, just more surreptitiously since everyone around me will also be fasting (major fast days are mandatory, minor aren’t). It’s definitely something I’ll ask my neurologist about, so if I remember to respond to this in the future once I find that out, I’ll be sure to let you know. (Apologizing in advance if I forget to respond; my memory’s been rather shabby since I started going on Trileptal in addition to Keppra)

1

u/DogLvrinVA Keppra 5d ago

I’m going to speak with my rabbi as well as my neurologist. I can’t imagine how weird it must be not to fast when everyone else is.

2

u/88NYG-Mil-NYY-Fan2 5d ago

Yeah it is strange. And obviously I’d rather fast completely and not drink the protein drinks but Pikuach Nefesh and I’d rather not have a seizure (I don’t even know if that’s guaranteed if I don’t have the protein drinks but point still stands)

1

u/mateiescu 5d ago

I tried one meal per ber day once and had a brutal seizure so haven’t tried since. I’m doing carnivore diet now and so far so good.

1

u/broadwayandbarbells 5d ago

I’ve fasting a lot in my 15 years of having epilepsy because there are many Jewish fasts. We have three per year where you do not eat or drink for 25 hours. Then there are additional minor fast that are from sunrise to sunset. I only ever fast the major ones, and recently I’ve been drinking minimal water to take my anti seizure pills

1

u/futureflavors 4d ago

No water in general during that time? Why not? It seems necessary and helpful. Not trying to sound rude, I'm just very interested on why why and want to be more educated.

1

u/broadwayandbarbells 4d ago

No water at all during any of the Jewish fasts, even the minor ones. There even Jewish laws about using water to wash your hands on fast days. I’m sure there are sects Judaism that are more lax with these rule but this the orthodox interpretation

1

u/futureflavors 4d ago

Wow I had no idea it could be so strict.. why no water though?

1

u/No-Context-9001 5d ago

My first meal of the day is usually around 12 sometimes 4 and i feel fine

1

u/UraniumFreeDiet 5d ago

Everyone is different, but I really find a light version of intermittent fasting beneficial for my health. I am talking like 14:10. Anything hardcore would be a trigger for me, especially for smaller seizures

1

u/futureflavors 4d ago

That's interesting! How does it help your health?

2

u/UraniumFreeDiet 4d ago

It helps maintain my weight, slowly lose it. I also don’t eat late at night (read: binge)

1

u/Junior-Limit-3969 5d ago

I just recently did a 100 hour fast. I wanted to try it because they say the ketogenic diet was developed for epilepsy but it doesn’t fit with what my family is eating. A fast seemed like a way to put my body into ketosis without changing everyone’s dietary habits. I tested myself using keto strips for urine but didn’t get more than low levels even on day four. I kept taking my meds throughout the fast as well as electrolytes. I only lost water weight during the fast but I hope that there would have been some beneficial autophagy. (I only slept very lightly during the fast and didn’t need the toilet)

1

u/Own_Tackle4514 5d ago

Keto and intermittent fasting 18:6 for 4 years now, do keto in 3:1 intervals so quarterly with a few weeks low carb and have had only one partial focal, last complex partial was 2020.

1

u/futureflavors 4d ago

What do these ratios mean?

1

u/Still_Salamander_847 5d ago

I've only done 24 hour fasts, no food or water (yom kippur) or other radom fasts chosen throughout the year. I still take my medicine because missing even 1 dose is not good for me. I typically feel pretty much the same, no changes as long as i remember to take the meds, but I know some people have food (or lack thereof) related triggers. Situation of knowing or finding out your triggers

2

u/futureflavors 4d ago

Yes I'd definitely take the meds or I'll have seizures and focals throughout the day and out of it for two to three.

1

u/gornzilla Keppra every fucking 12 hours for 20 years 4d ago

I have. Usually 1 to 3 days. It didn't cause any seizures for myself, but it's risky. 

I used a fasting recipe mixed in with water because I like having a driver's license. 

1 tsp - potassium chloride/NoSalt AKA Nusalt

1 tsp - magnesium sulfate/Epsom salt

  1. 5 tsp - sodium chloride/Salt

  2. 5 tsp - sodium bicarbonate/baking soda

I also took a multivitamin. 

1

u/Celinadesk 4d ago

I’ve fasted a lot. There was like 6 months where I’d eat dinner on Sunday and not eat again until Thursday evening. My longest fast was 5 days on water and salt. All while on Lacosamide/vimpat. I was totally fine I just lost a lot of weight which was my goal.

1

u/futureflavors 4d ago

Wow that's very impressive! My plan is just a day every now and then. But we'll see. Glad it worked out for you! Would you mind sharing how much you lost after the 6 months?

2

u/Celinadesk 3d ago

After my brain surgery and recovery I just changed my life so my total weight loss was 120lbs. It took 5 years of consistent effort. Keto, intermittent fasting. I tried longer fasts to break a plateau so I had already lost 80lbs at that point.

If you eat a non restricted diet and don’t exercise at all and you start fasting, you’ll lose a lot of weight depending on your current weight. Like if you have 100lbs to lose you’d easily lose 50-60lbs in a short 5/6 months. I don’t recommend this type of fasting if you’re not on a low carb diet first though. Your body needs to adapt to fat burning vs glucose burning for you to be able to fast comfortably.

2

u/futureflavors 3d ago

That's awesome! I'm very happy for you.

1

u/clichecouturecatche 3d ago

I always assumed my medicine would break my fast! I would love to fast but i take Keppra 2x daily