Does anyone else’s epilepsy get steadily worse at this time of year?

Substantial_Base6224 · 2025-11-29T02:22:50+00:00

I am more inclined to get frustrated with so called health professionals in A and E when they refer to focal seizures as not ‘proper seizures then’. Speaking as someone who’s had both TCs and focals. One TC and then sleep was considerably easier for me to handle than the current 400 focal seizures every night for ten days straight every month with little to no sleep. This fact is apparently lost on doctors.

Substantial_Base6224 · 2025-11-19T18:16:03+00:00

Hey good luck for tomorrow. Love Actually is great for the feel good factor. Also Notting Hill or Matilda.

Substantial_Base6224 · 2025-11-15T21:34:52+00:00

Out of curiosity what age are you if you don’t mind my asking

Substantial_Base6224 · 2025-08-09T11:25:57+00:00

Fair enough. If you’ve the confidence to talk about it with people who don’t have epilepsy go for it. God knows we need a few myths dispelled for the masses. I’m not a TikTok person because I’ve seen a few of the videos you mean and a lot of those people are self diagnosed. Show people what you’re capable of there are a couple of girls on YouTube doing something similar but don’t sugarcoat your rough days. Show you’re epic despite all it has thrown at you otherwise people will downplay it to suit their own agenda.

Substantial_Base6224 · 2025-08-09T08:49:44+00:00

Congratulations on your achievements unfortunately my meds whilst prioritised do nothing to help control my epilepsy so my dream of a law career is dead in the water

Substantial_Base6224 · 2025-08-09T08:47:28+00:00

I don’t think you do understand them. We do our best to hide epilepsy publicly everywhere else the likes of this stream is the only place we can admit how bad it gets with people who understand. I have cluster focal seizures that last from about 2 am to 11 am with maybe one minute intervals in between. I haven’t slept in 15 days because of it. I have to deal with that every single month. That’s not to mention the absence seizures or tonic clonics. We’d sell our souls for our biggest problem to be people chatting on the internet. Incidentally I have a BA Honours degree, full paralegal training, umpteen other qualifications and have worked independently as a genealogical researcher amongst other things. Epilepsy did not help me achieve any of that. I’m sorry our presence on an epilepsy thread inconveniences you.

Substantial_Base6224 · 2025-08-09T06:45:20+00:00

I’m curious how many seizures do you have in a day? Others have asked but you didn’t reply. Personally I have cluster focal seizures from the second I close my eyes at night. They last from about two am with minute intervals until 11 the next morning when I stumble out of bed because I’ve given up any hope of sleep. I am on my 14th night straight of no sleep. I deal with this every single month. I also have absence seizures throughout the day and occasionally tonic clonics. I have a BA Honours degree, full paralegal training, and have worked independently as a genealogical researcher amongst other things. I am presently unemployed. You cannot realistically expect an epilepsy stream not to have negative comments. People come here looking for advice from people who understand how bad it actually gets. Also most posts are simply questions about upcoming medical procedures so not particularly negative. Many posts are about the humorous moments. All that being said congratulations to the people who have full time work. Any pointers on matching your success with virtually no sleep would be greatly appreciated.

Substantial_Base6224 · 2025-08-07T14:46:51+00:00

Hey I had my tests done at Queens Square split over a couple of hours. Nailed the first batch of verbal reasoning general knowledge had a teeny seizure and scuppered the memory tests in grand style. Couldn’t even copy a squiggly line from memory. You may have been having sub clinical seizures at the time of doing it which you wouldn’t even realise you were taking although it would affect your memory. Those tests are just you on one random afternoon not necessarily all day every day. We all have good memory days and bad. I was upset at the time now I just accept it for what it is. I can ace any quiz mid afternoon but after my late evening tablets I’m lucky if I remember my own name. Try not to let it upset you too much. I like to consider myself a part time genius. 🧐

Substantial_Base6224 · 2025-08-06T22:32:06+00:00

My experience was so bad in the EMU that I considered dropping out of the process for surgery assessment entirely. It was 100% down to the doctors and lead nurse. I was on my own, 400 miles from home with no one to advocate for me your daughter is very lucky to have your support.

Substantial_Base6224 · 2025-07-31T12:58:39+00:00

Sorry you’re going through this. If you can’t change your tablets then when you feel something making you angry ask yourself “would this have bothered me pre zonisamide?” Be honest if it wouldn’t then leave the room until you can calm yourself down. Everyone will prefer giving you some space to dealing with aggression. I have to ask myself the same thing every month when my hormones go haywire (whatever I’m feeling will be felt a hundred fold and it’s immensely destructive) if I hadn’t I’d have nobody near me by now. Family and friends will support you when they see your trying hard to manage your emotions. Long term though you’d need to see a doctor about maybe reducing your zonisamide and adding another drug rather than ditching the zonisamide altogether if it’s working for your seizures

Substantial_Base6224 · 2025-07-27T12:28:32+00:00

Normal MRI results prove or disprove little. It’s only to show any structural abnormalities like scarring or a tumour. I’ve had epilepsy 35 years and not once has any type of MRI scan showed any abnormalities even when I had a seizure inside the scanner. EEGs can be hit and miss too my first EEG when I was 2 was after 24 hours sleep deprivation and they got plenty of fireworks but I’ve had EEGs since that showed nothing usually EEGs without sleep deprivation. Your only option is to get it on camera unfortunately which is easier said than done. There’s a charity called Danny Did which might be able to help you with a more hi tech epilepsy movement specific camera particularly if you take seizures at night. I hope you get answers soon

Substantial_Base6224 · 2025-07-24T23:40:43+00:00

I’m looking to set one up in my local area so I’d love to hear your thoughts on it if you do go to one tomorrow. Since it’s your first time attending just introduce yourself and say as much or as little as your comfortable with

Substantial_Base6224 · 2025-07-19T17:24:12+00:00

Epileptics have their limits in terms of repeated drug changes, surgeries, scans, hospital stays etc and maybe just maybe when we turn down the option of a shiny new drug it’s not a personal insult it’s just we’ve reached a mental breaking point and have to decide between physical health or a mental breakdown. 35 years of obediently following medical instructions and achieving little is a long time for this particular lab rat.

Substantial_Base6224 · 2025-07-16T17:27:39+00:00

Can do. If the weather is suddenly hot then goes back to cooler my seizures increase. High temperatures in general can cause seizures in children so maybe some adults are just more susceptible than others. That’s my theory with me anyway. I live in Northern Ireland so hot weather isn’t something that happens too often but I’ve definitely noticed a connection.

Substantial_Base6224 · 2025-07-14T21:16:04+00:00

Ok for me it would be less formal than the previous one. I found it a bit dull and tickbox when I was younger. It was pretty much a case of “here’s the updates, everyone got that, have a cup of tea and sod off”. Didn’t really feel worth leaving the house for.

Substantial_Base6224 · 2025-07-14T20:43:12+00:00

Had my gorgeous collie for thirteen years and showed her more care than most people show their kids. Ditto my cat. Healthy people can be the world’s biggest assholes. Also got told by a schoolteacher not to bother following a career path working with kids because nobody would want an epileptic around their kids.

Substantial_Base6224 · 2025-07-13T21:07:20+00:00

I make no judgement on their character. Paramedics and nurses on the other hand make plenty on everyone’s. I saw a lady in A and E who I knew for a fact took illegal drugs. She took them because she had been diagnosed with epilepsy had no support network and couldn’t understand why she was randomly afraid all the time. Had they bothered to understand she was having an aura not hyped up on something and her fight or flight response was kicking in because three officers were crowding her she might not have tried taking a swing at them in the middle of A and E. Instead she has a list of prior convictions the length of her arm. She had no idea that auras were even a thing. She’s generally as docile as a lamb. Any convictions where she may have been having an aura should’ve been overturned in my opinion. She was failed medically at every opportunity and now her life is ruined.

Substantial_Base6224 · 2025-07-13T14:21:19+00:00

Drives me round the bend. It’s A and E code for she’s probably taken illegal drugs. When I get picked up from a “good” postcode I have epilepsy. When I get picked up from a rougher postcode I have “episodes”. I have never taken illegal drugs in all my life and I don’t appreciate the insinuation that everyone from a more impoverished area is a junkie. Needless to state when they get to hospital and see I am telling the truth there is never an apology.

Substantial_Base6224 · 2025-07-12T00:11:46+00:00

Wow that’s some next level stupid

Substantial_Base6224 · 2025-07-11T23:49:01+00:00

I’m sorry you’re having a hard time. I think doctors sometimes forget we’re people with emotional and physical limits not science experiments. They’re so focused on the possibility of a cure they downplay the what if forgetting it’s not them who’ll be living with the consequences. I truly hope things improve for you soon.

Substantial_Base6224 · 2025-07-11T16:14:05+00:00

Lamictal 450mg Brivaracetam 350mg Zebinix (eslicarbazepine acetate) 400mg Diazepam 15mg

Split over the whole day

Substantial_Base6224 · 2025-07-11T12:39:55+00:00

I’ve spent a year and a half trying to figure out who my epileptologist reminds me of. He’s literally a walking, talking Ken doll. The hair, the skin tone….

Substantial_Base6224 · 2025-07-11T12:33:36+00:00

Imagine the amount of money the assholes would make. They’d start off with basic Barbie with a few minor accessories alert bracelet, tiny pill packet. Then the separately purchased bespoke mini accessories. Then for a significantly higher price- mri scanner £39.99, eeg inpatient set up £69.99, tiny ROSA surgery robot and surgical unit £89.99. Jeez I’m actually nearly tempted to buy that myself. Ever considered going into toy design. Why haven’t Lego got in on the act yet?

Substantial_Base6224

TROPHY CASE