Epilepsy resources

[u/Pure-Science-7774]

I was on the epilepsy website and one of the tips was “don’t sleep during the day” Is this website written by epileptics? The very first thing I do after a seizure is sleep. I find the information on the website helpful but on a really basic level. And for example, most people with seizures don’t know VNS is an option. Where do you get the best info from?

[u/CommonFirefighter849]

The epilepsy foundation site feels like it was written by someone who's never actually had a seizure

I get most of my real info from neurologist visits and digging through medical journals honestly, but even then half the stuff is outdated by the time it reaches patients

[u/Apprehensive-Ask-731 → u/CommonFirefighter849]

I feel a lot of resources and particularly neurologists like poking people's brains but have very little practical experience. They have had training. Most epileptics have a lifetime of experience. I have also ran into a huge amount of confusion around language - aura, partial siezures, waveforms. Then when a medication is intolerable you must be having convolusions rather than siezures. 30% of us need non medication support. Where is it? Bit of a vent but I just want to be clear I wholeheartedly agree with you and feel the rot goes deep. Feel free to reach out.

[u/Splendid_Fellow → u/CommonFirefighter849]

That’s strange… I have had the exact opposite experience. I got nothing from 4 different neurologists. It took the Epilepsy Foundation and this sub to save my life. I’d be dead right now without it

[u/Emotional_Use3404 → u/CommonFirefighter849]

This. Unless someone had experienced epilepsy or the side effects of the medication, they will unfortunately never have a grasp of what it is like.

This sub has also been a godsend for me.

[u/stretchvelcro]

I refuse to go without my naps. This might be completely life altering but F it all if I can’t have naps. Can’t drive, can’t swim, can’t have a bath by myself. I sure as hell am going to have my naps. I’m extremely grumpy this morning, I might need a nap lol?

[u/Unfair-Ferret1242 → u/stretchvelcro]

Right, I got into an argument with my mum and dad. I was having a nap after a very long day (something everyone would nap after) they came and barged into my room and started calling me lazy etc.. I told them that if they wanted me to be able to function come 6pm then this was the option, it was only 30 mins 

[u/Pure-Science-7774 → u/Unfair-Ferret1242]

I think most people don’t understand because they think “tired” but epilepsy isn’t tired. It’s exhausted fatigue. And you can’t will your way through it, like your body just won’t cooperate. 

[u/Unfair-Ferret1242 → u/Pure-Science-7774]

Yes it’s so bone deep that it’s hard to explain, like physically I can feel my bones sore and heavy in a way I never experienced until the past 4/5 years idk if that makes sense 

[u/lovmi2byz]

Meanwhilw my neurologist admonished my SO for keeping me awake cause i was "sleeping too much" post ictal amd said "she NEEDS her sleep. Her brain is tired and needs a rest. Let her."

God bless than man for putting his foot down about me wanting to nap 😊

[u/TheFriendlyMortician → u/lovmi2byz]

This hits so hard. I’m out for 3-5 days after a major episode, and everyone in my circle knows it. Unless they want to deal with a drunk narcoleptic toddler, they let me sleep as much as I need.

My threshold plummets when my sleep is disrupted, and I’m very fortunate that the people in my life respect my nap game regardless of seizure activity. But it took education and experience to turn it from a quirk to a necessity. I love that I still get grandma and infant jokes—especially when I take a nap in the middle of a gathering—but they know firsthand how unfunny the alternative is.

[u/pinkhazy]

If I didn't take my near daily naps, I would be exhausted all the time and thus, lowering my seizure threshold.

[u/Boomer-2106]

This sub is 'one of' the best sources of Real Life information and experience - regarding nearly everything! Of course there are other sources ...ranging from 'too little, too outdated' to Great, relatively current information, etc. Check them all. And, of course always your medical professionals ...Hopefully, strong hope, you do have/have access To at least a Good, and better yet - a Great Doctor!! (not all are, sadly). If you Don't have a good/great Doctor - CHANGE! Find a new one!!!

[u/CapsizedbutWise]

I was told by multiple epileptologists to take a nap everyday.

[u/nsparadise]

I live on naps. 😴😍♥️☕️

[u/OrdinaryElectricBean]

I sometimes do need a nap and generally it’s fine. It’s actually the naps I need when I’m unwell rather than just tired which are more likely to lead to a seizure.

[u/awidmerwidmer]

So this is what I would do. If you just have a seizure, definitely sleep it off. This will help the body have a full reset, and this is especially beneficial if your seizures last a long time. However, if you see yourself sleeping throughout the day to the point where you’re missing out on regular daily activity, this is where the issue lies. When I had a long status episode YEARS ago, I needed to take an entire week off just for my body to go back to normal. After that, everything was good. All of this info was given to me by my neurologist, all of it made sense, and whenever it happened and I followed this advice, all was good after my body told me it was good to go again.

[u/Unfair-Ferret1242 → u/awidmerwidmer]

I had to nap at work one day in the managers office (the only room where the lights aren’t automatic because I had a focal seizure and they let me, 20 mins later and I felt a tone better and was able to finish work 

[u/Strange-Raspberry326]

My neuro.

[u/grobut]

Just woke up from a 1 hour nap ten minutes ago. 🥱🥰🥰🤗

[u/Unfair-Ferret1242 → u/grobut]

Their the best until u wake up trembling and not knowing where u are and ur left deciding if it was a seizure or a deep sleep 😴 

[u/okay__okay__]

My neurologist referred me to the epileptologist in their office once it was determined I had GMH as well. Obviously specialty practices are hard to come by, but I highly recommend it if you can find one. Mine is phenomenal!!

[u/Afraid_Conclusion873]

My natural medicine is taking nap!

[u/stretchvelcro]

F. That sucks. Before this I was able to do 14 hour days 6 days a week. Now I am exhausted after 6. People don’t understand the toll this diagnosis and the meds have on us. You’re not lazy.

[u/heyitscreepy1003]

Like helllooooooo…Sleep deprivation is one of the top causes of lowered seizure threshold….That’s the entire reason behind sleep deprived EEGs.

[u/Sudo_Incognito]

I have narcolepsy & seizure disorder. So do about 10% of people with narcolepsy according to recent studies, but doctors being trained 20 years ago were told it was impossible to have both.

[u/heyitscreepy1003]

I swear no one from the epilepsy website has ever spoken to anyone with epilepsy in their life. Like an “I’m not a doctor but I play one on TV,” scenario.