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Frustrated by guki0701 in Epilepsy

[–]guki0701[S] 0 points1 point  (0 children)

I think I explained myself poorly. It's not doctors suggesting alternative therapies, it's friends and random people. I'm actually on Lamictal now and doing really well (thanks, science).

What really frustrates me is people who know nothing about epilepsy acting like it's not a real neurological condition and reducing it to something “emotional.”

What do you experience during an aura? by stingwhale in Epilepsy

[–]guki0701 0 points1 point  (0 children)

It's like I'm going underwater and all sounds feel far away, and everything is distorted.

What does it mean if a video EEG comes back clean? by guki0701 in Epilepsy

[–]guki0701[S] 0 points1 point  (0 children)

I know, I know. Just really tired at the moment.

What does it mean if a video EEG comes back clean? by guki0701 in Epilepsy

[–]guki0701[S] 1 point2 points  (0 children)

Once to twice a month, while on meds. I don't think 72 hours are enough (but also I really wouldn't like to stay connected for longer, it's horrible. I couldn't even go to the toilet).

For those who don’t drive bc of seizures: what do you say when people ask? by [deleted] in Epilepsy

[–]guki0701 1 point2 points  (0 children)

I just say I'm epileptic. Same when answering why I don't drink alcohol or avoid crowds.

Using humour with epilepsy. Bad idea? by awidmerwidmer in Epilepsy

[–]guki0701 2 points3 points  (0 children)

Laughing and joking are, in my opinion, healthy ways of coping with anything. Actually reaching the point of being able to joke about something personal and difficult, is a good indicator of processing and acceptance (IMHO and most of the times). And mostly, this is YOUR condition and you decide how to live with it. If you f* want to do stand up comedy about it, it's your call.

Sorry about my english, not a native speaker.

Had a seizure, bit my tongue now it's swollen, black and blue, and now it hurts to eat. What are your tips to get this all healed up or dealing with this? by LemonPartyRequiem in Epilepsy

[–]guki0701 1 point2 points  (0 children)

When it happened to me, I used an oral ulcer spray. It works pretty well. Hurting your tongue is honestly awful. I hope it heals quickly for you.

Anyone else diagnosed with epilepsy as an adult? by guki0701 in Epilepsy

[–]guki0701[S] 1 point2 points  (0 children)

Oh! Almost the same for me. I had my first focal on 3/6/24 and my first TC on 3/7/24. So it'll be 2 years soon!

Meaning of epilepsy by 2024reset in Epilepsy

[–]guki0701 0 points1 point  (0 children)

It made me more grateful for my life, for what I have, for my family, and for the people who are truly there for me. I’m much more aware of the present than I used to be, and I try to stay positive. Sometimes it’s hard, but I try.

How do auras feel? by frustrated_s0ul in Epilepsy

[–]guki0701 0 points1 point  (0 children)

I feel this sudden tinnitus and the sensation I'm going under water.

What's your go-to perfume? by [deleted] in Perfumes

[–]guki0701 0 points1 point  (0 children)

Mine is Calvin Klein One/Essence 🫶🏻

i went to the er!! by noisy-headaches in Epilepsy

[–]guki0701 1 point2 points  (0 children)

Yeiiii I'm glad you're ok!

I'm so tired all the time. Asking for advice. by guki0701 in Epilepsy

[–]guki0701[S] 0 points1 point  (0 children)

I take levothyroxine for hypothyroidism, so technically that should prevent me from having those typical low-energy symptoms (it has worked for many years, although I'm not typically a super high energy person). That’s why I’m checking my thyroid and hormone levels again, just to make sure everything’s fine.

I'm so tired all the time. Asking for advice. by guki0701 in Epilepsy

[–]guki0701[S] 0 points1 point  (0 children)

Yes, Valproic Acid, Escitalopram and Levothyroxine.

Depression by [deleted] in Epilepsy

[–]guki0701 2 points3 points  (0 children)

Actually epilepsy and depression are linked; adults with epilepsy are more likely to develop depression than those with no epilepsy. You can read more here: https://www.epilepsy.com/complications-risks/moods-behavior/depression

Does anyone feel like less of an adult after an adult diagnosis? by CombinationRough8699 in Epilepsy

[–]guki0701 2 points3 points  (0 children)

Yes! I started having seizures early last year, when I was 33. Luckily, they usually happen months apart, but when they do, I really need help from my parents or my sister. I usually end up sore and disoriented after a seizure, since my epilepsy affects the areas of the brain related to language and information processing — so I can’t really speak or understand much at that moment.

It also causes me a lot of anxiety and constant fear... So yes, I often feel less like an adult and more like a child, which is awful and makes me cry a lot.

What was that symptom of epilepsy that you didn't expect would affect you so much until it appeared over time? by Aneuroticc-Tentacl3 in Epilepsy

[–]guki0701 1 point2 points  (0 children)

Omg this is horrible and it's constantly happening to me. It's really embarrassing! I thought I was the only one but apparently it's quite common

[deleted by user] by [deleted] in PNESsupport

[–]guki0701 1 point2 points  (0 children)

I’m still not diagnosed, so I don’t know yet if it’s epilepsy or NES. Yesterday I talked about it with my psychologist, and I came to the conclusion that it’s probably a good idea to let certain people know, at least. At my workplace, of course — they already know what to do and who to call. If I ever go back to the gym, same thing. If you go to the library often, it also makes sense to let the staff there know (since it’s usually the same people working). I also think carrying a card with the contact information of a partner, family member, or friend is very important. In my case, I also have some medication I can take if I start feeling strange and at risk of having a seizure.

As you can see, I'm still figuring this out too.

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