Epilepsy and diets
imabeevampire
Posts: 166 Member
Bit of an odd one, does anyone suffer epilepsy?
Mines fairly well managed but I ALWAYS end up having a seizure within a couple of days of me being *back on the diet*
Anyone else? I can't imagine it's a calorie thing and I haven't been back to the gym yet so I know it's not over exercise.
Just curious if anyone else out there has any input 😬
Mines fairly well managed but I ALWAYS end up having a seizure within a couple of days of me being *back on the diet*
Anyone else? I can't imagine it's a calorie thing and I haven't been back to the gym yet so I know it's not over exercise.
Just curious if anyone else out there has any input 😬
4
Replies
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I’m also epileptic and after trying multiple diets my seizures have always increased. I am starting this year using MFP but have done it to lose 1/2 pound a week so is not a major jolt to system (discussed with consultant). It will take longer to shift weight but hopefully with less impact on seizures.4
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Talk to your neurology doctor before you start a new diet.5
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Have you talked to your doctor about using a ketogenic diet to help manage your symptoms? There is pretty sufficient evidence between the two.7
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I'm a Celiac and through learning about how to deal with that I found out that a lot of people with Celiac Disease have epilepsy. Celiacs are 1.8 times more likely to have epilepsy than the general population. Also, I've read that 53% of folks with epilepsy do better on a gluten free diet.
Something to look into or ask your doctor about.5 -
imabeevampire wrote: »I can't imagine it's a calorie thing
How many calories did you have? Having too few could lower blood sugar, which can trigger seizures.3 -
Cherimoose wrote: »imabeevampire wrote: »I can't imagine it's a calorie thing
How many calories did you have? Having too few could lower blood sugar, which can trigger seizures.
Also dehydration can affect electrical impulses in the body. Did you lower your fluid intake?
If the cause is not obvious to you, I would definitely consult with your medical team.4 -
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Cherimoose wrote: »imabeevampire wrote: »I can't imagine it's a calorie thing
How many calories did you have? Having too few could lower blood sugar, which can trigger seizures.
Read that this morning after doing research. I think it might be linked. Usually just a jolt to the system from binging lots of chocolate to suddenly cutting it all out0 -
Have you talked to your doctor about using a ketogenic diet to help manage your symptoms? There is pretty sufficient evidence between the two.
I was going to suggest this .. but you already tried it.
As you know everyone is different and I’ve never read about any other diet associated with seizure control or tiggers, you should always see your epilepsy team before trying something new you have come across . Good luck 😉2 -
It's usually a 6 month waiting list to be seen by my neurologist, so just going off doctors reccomendation. Fingers crossed it was just a blip and slightly dehydrated 🤞2
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I'm on Keppra and the epileptic seizures are at bay.0
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Have you talked to your doctor about using a ketogenic diet to help manage your symptoms? There is pretty sufficient evidence between the two.
Off topic but That is how I came about using keto to control migraine. They prescribed me an anti seizure drug and said there was good correlation between migraine and seizures. I am now off that drug and just ketoing and on a low dose preventative for those times I eat outside of keto.6 -
youngmomtaz wrote: »Have you talked to your doctor about using a ketogenic diet to help manage your symptoms? There is pretty sufficient evidence between the two.
Off topic but That is how I came about using keto to control migraine. They prescribed me an anti seizure drug and said there was good correlation between migraine and seizures. I am now off that drug and just ketoing and on a low dose preventative for those times I eat outside of keto.
That is awesome. My friends teenager is dealing with migraines and anxiety. I have providing him some evidence to initiate discussion with her medical team.1 -
imabeevampire wrote: »Cherimoose wrote: »imabeevampire wrote: »I can't imagine it's a calorie thing
How many calories did you have? Having too few could lower blood sugar, which can trigger seizures.
Read that this morning after doing research. I think it might be linked. Usually just a jolt to the system from binging lots of chocolate to suddenly cutting it all out
Maybe try a slower transition. Might be easier for your body to adapt.5 -
candylilacs wrote: »I'm on Keppra and the epileptic seizures are at bay.
Oh my god keppra was the most horrific drug for me! So glad it works for you.0 -
I am another Keppra taker, my neurologist has suggested we consider titrating my dose down with a view to being off meds completely eventually as I have been seizure free for 8 years. I am willing to do this under medical supervision as I agree, keppra is not the nicest drug (keppra rage is real, and the runny nose!) I have read a few studies linking keto to seizure control and I will be mentioning it at my next appointment. Good luck everyone though epilepsy is a scary thing x1
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imabeevampire wrote: »
In other posts it sounded like you drastically cut your calories and were dehydrated. If this is also when you did keto, maybe try again while getting plenty of salt, fluid, and not creating such a big calorie deficit. You could also try easing into keto rather than hopping right into it.
Note: I think this might be the only time I've ever recommended keto, so I am not coming from a "ketovangelist" perspective
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kshama2001 wrote: »imabeevampire wrote: »
In other posts it sounded like you drastically cut your calories and were dehydrated. If this is also when you did keto, maybe try again while getting plenty of salt, fluid, and not creating such a big calorie deficit. You could also try easing into keto rather than hopping right into it.
Note: I think this might be the only time I've ever recommended keto, so I am not coming from a "ketovangelist" perspective
I can vouche for that!3 -
I'm on lamotrigine after Keppra didn't work. It has the side effect of constipation so I have to make sure I have loads of fibre and drink litres of water as I'm always thirsty.
I'm only partially controlled and have to really watch my blood sugar levels as I get weak, can seize and the partials get really bad. I try to eat low GI wholegrains, avoid sugar, eat lots of pulses and if I have a pudding I make sure the main meal is low GI and fibre packed.
Keto had no effect on me -maybe cos I'm too old lol (47 btw)
Oh yeah, one more thing, when I'm post seizure or just really tired I have diet replacement drinks for the nutrients and ease of getting something decent in my belly without any effort.
Good luck x0 -
I've heard that. I am allergic to lamotrigine -- it causes me to break out in hives, so onto Keppra. 500 mg in AM, 750 mg in the PM, and I hadn't any seizures for 2.5 years. I had no major setbacks in the keto arena (I'm in my mid-forties).0
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After reading through the thread it sounds like the problem is your approach, not diet. When you tried keto (or any other weightloss attempts) did you gradually transition to it over a couple months or jump right in and quit a couple days/weeks later? If the latter, the cause of the seizures was much more likely from the physical and psychological stress of radical changes.
Another factor to consider is your exposure to potential triggers. If you tend to go overboard with things like caffeine, nicotine, sugar, alcohol, etc, you will likely experience worse and more frequent seizures if you quit them cold turkey instead of weening. It’s much safer and more effective to gradually decrease your exposure over time.
In terms of personal experience, I have a confirmed diagnosis of focal onset seizures that we believe has been going on since childhood. Whether it is specifically epilepsy is yet to be determined, however indicators and worsening mri results suggest I am living with temporal* lobe epilepsy. I am responding well to lamotrigine and will be beginning my maintenance dosage tomorrow.
As for diet, my doctor and neurologist both recommended I aim for 1,800-2,000 calories daily on physically active days (work, walks, swims, etc), and 1,700 on inactive days. Prior to the recommendations I averaged about 1,500 daily and was regularly having focal seizures after walks no matter how careful I was about my water and electrolytes. After the increase, my seizure frequency reduced dramatically. All dietary changes I’ve made (increased veggies & meat, reduced startches, etc) have been gradual and I *try* to balance my macros at about 1/3 each. Diet improvement has not reduced seizures related to sleep or external triggers like overheating or stress from toxic coworkers and relatives.
[Edit: It’s actually temporal lobe epilepsy that is suspected, so just wanted to correct that to avoid any confusion in the future.]6 -
unstableunicorn wrote: »After reading through the thread it sounds like the problem is your approach, not diet. When you tried keto (or any other weightloss attempts) did you gradually transition to it over a couple months or jump right in and quit a couple days/weeks later? If the latter, the cause of the seizures was much more likely from the physical and psychological stress of radical changes.
Another factor to consider is your exposure to potential triggers. If you tend to go overboard with things like caffeine, nicotine, sugar, alcohol, etc, you will likely experience worse and more frequent seizures if you quit them cold turkey instead of weening. It’s much safer and more effective to gradually decrease your exposure over time.
In terms of personal experience, I have a confirmed diagnosis of focal onset seizures that we believe has been going on since childhood. Whether it is specifically epilepsy is yet to be determined, however indicators and worsening mri results suggest I am living with temporal* lobe epilepsy. I am responding well to lamotrigine and will be beginning my maintenance dosage tomorrow.
As for diet, my doctor and neurologist both recommended I aim for 1,800-2,000 calories daily on physically active days (work, walks, swims, etc), and 1,700 on inactive days. Prior to the recommendations I averaged about 1,500 daily and was regularly having focal seizures after walks no matter how careful I was about my water and electrolytes. After the increase, my seizure frequency reduced dramatically. All dietary changes I’ve made (increased veggies & meat, reduced startches, etc) have been gradual and I *try* to balance my macros at about 1/3 each. Diet improvement has not reduced seizures related to sleep or external triggers like overheating or stress from toxic coworkers and relatives.
[Edit: It’s actually temporal lobe epilepsy that is suspected, so just wanted to correct that to avoid any confusion in the future.]
I also have temporal lobe epilepsy! Taking lamotrigine too. This was really helpful to read thank you! I'm usually good at reading my body but I can see the sudden drop in calories is very significant (especially over Christmas where I probably ate more)
Will approach it a bit slower and make sure I'm more hydrated because I know that's definitely a trigger.
Will look into keto again for the new year.3
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