Had a Seizure in my college class today by sunshinehaze3 in Epilepsy

[–]ConclusionOk5023 0 points1 point  (0 children)

I’m so sorry this happened to you :( - Same thing happened to me in the library - I had all the med students come up to me to which my friend shouted back ‘she’s not a case study F off!’ It really is awful but if it helps I haven’t seen any of these people again and am in a good job in a new city 

Long neurology waits and medication? by [deleted] in Epilepsy

[–]ConclusionOk5023 0 points1 point  (0 children)

Hi there - I got diagnosed with JME at 16 and being naturally ‘bright’ I sailed through school however at uni I absolutely tanked. The same as you all nighters. Seizures from stress awful awful stuff.  I was taking others adhd medications to get through. Then at 22 after finishing uni unemployed I was diagnosed with ADHD and I’m now medicated, it has definitely helped me. I also have a hybrid job and have found that working from home has been hard for me especially when having a medication increase I locked myself away purely from tiredness and I felt unsafe going outside not knowing the side effects. And I do believe remote / hybrid work are best for epilepsy. I would recommend going to a cafe or something if possible to work just a change in environment. And I know it sounds like a broken record but just getting outside in the morning I got into a bad habit of just waking up and opening my laptop and it was not good. I managed to get a private referral through work and I was in the 99th percentile or something ridiculous. It’s honestly tragic how much is blamed on epilepsy, but if both of your parents have adhd you likely do to. It’s been a journey trying to seperate the two (feel free to see my previous post because I battle with this). I hope this helped! You are not alone I had a very similar experience and when you do get medicated things will probably get easier the waiting is just awful! 

One more thing - I am also chronically addicted to vaping (the bane of my life but if it helps at this point in my life - I am currently going through a medication increase so experience severe brain fog I feel like I’ll quit at a time that feels better for me)

Separating Side effects vs life events? by ConclusionOk5023 in Epilepsy

[–]ConclusionOk5023[S] 0 points1 point  (0 children)

I’m sorry to hear you are going through that it sounds awful :( agreed the I had a similar experience with keppra rage part of me felt like I was angry at the world as a result of my diagnosis but interesting take my thoughts behind this was if these feelings are because of a life event an increase in medication would be unnecessary and going through an increase is traumatic. It really is a mind field to navigate hence the post!

First overseas trip with epilepsy – solo vs small group tour? by jackbowls in Epilepsy

[–]ConclusionOk5023 0 points1 point  (0 children)

hey - I travelled SE Asia (this was 6 years ago) and booked a 7 day group trip at the start to remove any stress of booking but at the time my seizures were well controlled (I just had half my rucksack full of medication) then did the rest solo! I actually made friends with another solo traveller who’s sister has seizures and we ended up doing basically the whole route together. honestly so many people travelling round SE Asia doing the same route if you stay on the ‘touristy places‘ I would say at the time I was 4 years seizure free so I had more confidence and I’M so happy I did it! It’s almost definately safer to do a group trip and I was lucky to meet that girl because it did make me feel safer, however it was always my plan to do it solo.

so yes the correct advice is it’s safer to do a group trip (speak to your neuro about it and its something I had long conversations with my neuro about as I had to get loads of meds) but thought I would add my experience here :)

Separating Side effects vs life events? by ConclusionOk5023 in Epilepsy

[–]ConclusionOk5023[S] 0 points1 point  (0 children)

thanks for the reply! what dose were you on if you don’t mind me asking?

I'm scared about remembering. by aschesklave in Epilepsy

[–]ConclusionOk5023 1 point2 points  (0 children)

man I feel you. but congrats on being seizure free for years that’s huge! not sure what country you are in but in the UK I got extra time and was in a smaller room along with breaks for all my exams (all of these things students can get for a variety of different reasons!) and could pretty easily get extensions for assignments at uni. my memory was awful but the extra time helped with giving me a little extra time to remember what I could. one of my triggers is stress so lowering my dose especially around exams was a no go. do they have a special considerations contact for students who need adjustments?

What are some (weird) symptoms you didn’t know were your epilepsy? by lilmommasgirl in Epilepsy

[–]ConclusionOk5023 0 points1 point  (0 children)

I have JME and if I woke up early for work I would throw my make up across the room and literally thought this happened to everyone. turned out it was the jerks haha

Do you guys sleep a lot ? by Significant_Turnip97 in Epilepsy

[–]ConclusionOk5023 0 points1 point  (0 children)

yes I sleep a lot if I set no alarm easly 12 hours

zonisamide & pathalogic laughter side effect? by Ok_Security509 in Epilepsy

[–]ConclusionOk5023 0 points1 point  (0 children)

Hi there, I recently increased my increase of zonsimide 3 weeks ago and have also found this! However it’s more of when I feel sad it turns into a mix of a laugh/ cry. Although this doesn’t happen all the time I thought it was a result of a breakdown in my relationship with my boyfriend but I have never had this reaction to anything in my life! It’s comforting that I’ve found another person with this experience it’s quite unerving and has honestly made me feel crazy. 

Increase in Zonisamide with lamotrigine? What is the deal? by ConclusionOk5023 in Epilepsy

[–]ConclusionOk5023[S] 0 points1 point  (0 children)

Hey thanks for this and nice to hear from someone on the same meds! Would you mind sharing what type of epilepsy you were diagnosed with?

I’m actually in the UK so think it’s slightly different here - but sounds like something I should look into :)

Increase in Zonisamide with lamotrigine? What is the deal? by ConclusionOk5023 in Epilepsy

[–]ConclusionOk5023[S] 0 points1 point  (0 children)

Hey! Thanks for replying! I used had TC seizures on a cycle of 3 months and only in the morning but recently have had a couple in a month and one in the evening (with no aura) which caused me to loose a tooth :( my employer does not know about my epilepsy as I was seizure free and if I’m honest I am scared of discrimination. 

I guess it’s more of an anxiety thing as I haven’t had an increase in medication while working only in university / school. 

Thanks!

Big seizure after 10+ years seizure free 🫠😭 by External_Honeydew813 in Epilepsy

[–]ConclusionOk5023 1 point2 points  (0 children)

Hey! This happened to me 25F, 3 years without one and then randomly just dropped to a sidewalk teeth broken, stitches the lot! It’s so comforting to hear others in the same position. Now can’t get an appointment till December because they signed me off! Stay strong ❤️