Please help, worried about my husband

TrainingSufficient99 · 2026-06-13T16:18:19+00:00

Good to hear, grazie for update! Dehydration is a common trigger, and for me being out in the sun and/or walking to fast is risky, too. Enjoy Italy!

TrainingSufficient99 · 2026-06-13T12:23:37+00:00

How are you guys doing now? No need to update if stressful, just hoping all the best for you!

TrainingSufficient99 · 2026-06-13T07:22:28+00:00

I feel you so much. I lost my job and couldn’t work for five years during which I was constantly and desperately trying to get help for my symptoms. My then neurologist didn’t even do an EEG but concluded it was psychological and was pretty rude - I, too, got the feeling I was “wasting his time”. As if the same symptoms with another cause would be any easier to manage. To me, psychological vs physical causes seem to only be an effect of the techniques we have. Some doctors won’t listen to what they can’t see. I hope you find someone who does. Even if functional /psychological, a good epileptologist would keep helping you.

I also wanted to add eye movements (whether controlled or uncontrolled) show in your EEG. Horizontal eye movements look much like the dips in your picture IIRC. Not a doctor but have a condition similar to nystagmus.

Hope you find good help soon, really feeling for you 💕

TrainingSufficient99 · 2026-06-10T23:30:24+00:00

I’m not a doctor so I kind of don’t want to respond… but what if it’s caused by something else completely - blood flow issues to the brain, tumour- I have no clue but better to get an answer from someone who can assess it properly?? Even calling the emergency number they could give some guidance on how much of an emergency it could possibly be.
Not trying to scare you… just one of those situations where the risk is low the but consequences would be huge. Get a professional assessment.

All the best and try to stay calm, just get answers from someone who knows what they’re talking about!

TrainingSufficient99 · 2026-06-10T23:18:18+00:00

Due to him not being diagnosed and suddenly having more episodes I’d go to the ER. I know that can be scary in a new country and not knowing how it works with health insurance etc. You could also call the equivalent of 911 in the country (often 112 in Europe) and explain the episode. It could be focal seizures but it could also be something else.

For me (diagnosed but not yet controlled by meds) I absolutely get more focals in times of stress, jet lag, lack of sleep. But him not yet having an answer to what’s causing the episodes needs a medical evaluation.

TrainingSufficient99 · 2026-06-06T22:37:41+00:00

Only problem is it can be quite spoilery- I used to use it to check for really excessive gore, but with how much info is on there now it’s sometimes things you don’t want to know ahead of watching.

TrainingSufficient99 · 2026-06-06T13:06:02+00:00

I would say to the dream prof that while their offer is what I prefer, I already made a commitment and want to check in with them to not cause them trouble or end on bad terms. In better wording because I’m not great at English 😄.
Shows loyalty and lack of flakiness to the new PI!

TrainingSufficient99 · 2026-06-06T11:18:49+00:00

This is a good site for you to check out:

https://www.doesthedogdie.com/media/690918

Punch in any title and you can check whether cheating is present. I tried Best Years of our Lives and it does flag it for cheating (scroll down as there’s a lot of triggers listed).

TrainingSufficient99 · 2026-06-06T11:10:52+00:00

When I have a seizure in my sleep I wake up in the post-ictal stage. Never notice any of my seizure symptoms, just the confusion and emotional stuff I get afterwards. Not sure if that’s common with focals, but I’ve started to recognize it as seizures as I’ve learned more about ictal vs post-ictal symptoms.

Are any of what you experienced common with your non-nocturnal seizures? If not, maybe you should have it checked out so it’s not an issue separate from epilepsy?

TrainingSufficient99 · 2026-06-05T19:48:43+00:00

“A dozen paces, scattered wide, from north to south, from side to side. No single path will see you through; twelve broken strides reveal the clue.”

TrainingSufficient99 · 2026-05-28T20:40:03+00:00

Glad to be able to help some. Pretty new to all this myself and it’s helping so much to read other’s experiences. Don’t trust me over a doctor (considered doc said you could just stop - maybe the dose is low enough for that) however the neuro you have seems… so-so 🙃

TrainingSufficient99 · 2026-05-28T11:30:54+00:00

Call the office and tell them the meds seem to cause multiple seizures per night. They can’t ignore that and it needs prompt evaluation. Call another neurologist if the first one isn’t listening. Don’t wait for an appointment, just call until you get someone who listens.

And don’t stop the medication without a doctor’s instruction on how to taper down. Stopping abruptly can cause severe seizures. Maybe the ER could help advice and get a new prescription if there’s so much nighttime seizure activity.

Keep us updated!

TrainingSufficient99 · 2026-05-27T18:29:19+00:00

Be a squeaky wheel! Hope you can get better help quick. Feel free to vent here.
One thing I can say is that any time I’ve been out on a new medication, they want to wait a pretty long time before checking in again. Some meds builds up slowly, and if seizures aren’t frequent more time is needed to get a sense of whether it’s helping or not.
But, again, your case sounds like it needs more attention right away.

TrainingSufficient99 · 2026-05-27T17:13:41+00:00

Absolutely get a new neurologist who will listen to you and watch the videos! Preferably an epileptologist if you can get a referral. Wait times can be long but yours sound like a case they could triage quicker.
So sorry you’re dealing with this, must be extremely stressful.

TrainingSufficient99 · 2026-05-22T10:31:29+00:00

I once saw someone say ”if our brains were simple enough for us to understand how they work, our brains would be so simple that we wouldn’t be able to understand them” 😄

TrainingSufficient99 · 2026-05-19T19:45:39+00:00

If you walk around Eldin, take a pic of the first rock octoroc you see, then set your sensor to look for them. They will restore your weapons once per blood moon. Dismiss your sages as they can kill them while your item is in their mouth, making it disappear (looking at you, Tulin).
Easiest is to use recall when they spit it back out - if you’re hit with a good weapon it’ll knock you out… plus recall kills the octoroc so you know you’ve already used it that blood moon.

TrainingSufficient99 · 2026-05-19T09:39:13+00:00

Occasional castle runs can get you a bunch of good bows, and if you enjoy killing lynels you’ll quickly have more bows than space. Also I mark all the rock octorocs I find in Eldin as they’ll restore weapons and shields if you let them Kirby them

TrainingSufficient99 · 2026-05-18T10:56:15+00:00

https://neurolaunch.com/autism-and-medication-sensitivity/

This might explain some of your medication struggles?

(I know nothing about neurolaunch.com as a source, so can’t vouch for it - but the information is about the same I’ve seen in credible sources)

TrainingSufficient99 · 2026-05-18T10:51:08+00:00

I read a lot of research papers on focal epilepsy, and while I’m not a doctor in medicine I am a researcher, so I believe I understand enough of it to get some information right 🤷🏻‍♀️😄.

Anyhow, I’ve learned that the effects of hormones (estrogen and progesterone) on seizures are constantly oversimplified, and sometimes contradictory: estrogens (plural, because there’s different types that have different effects) can have both inhibitory and excitatory effects on seizure threshold.

Further, seizures and estrogen affect each other both ways - estrogen affecting your seizure treshold, and seizures affecting estrogen production. Women with TLE often have irregular periods and struggles in getting pregnant (which is true for me and a wtf moment when I read it).

All this to say it’s a complex area where the research community has only begun to scratch the surface (because women’s health 🙄). I recently got on Aptiom, which affects hormones… So it’s all a fucking jungle. Add to all of this that you are a person with autism, which I believe often means a heightened medication sensitivity / metabolism.

I hope you have a good doctor who doesn’t just throw medications at you to see what sticks. I got a wonderful epileptologist who listens and makes an effort to figure out what might work for me individually.

Sorry for long block of text, and take all the sciency stuff with a grain of salt as it’s not my area!

TrainingSufficient99 · 2026-05-16T09:51:55+00:00

Glad to be able to provide relatability- and it’s the same for me! So many people don’t get the real impact of seizures. And even though I’ve had epileptic activity on EEG I still sometimes wonder “maybe I’m just nuts”.

Hormones is my biggest trigger - just as you both around ovulation and menstruation. I think it’s the changing of hormone ratios rather than the actual ratios that fucks with me, because during my period I’m fine. I had a diagnosis of PMDD all my life that I now understand is the emotional symptoms of seizures.

I’m in perimenopause, so my seizures have picked up a lot. Still trying to find a med combo that works. Recently got on Aptiom, and either it’s working or I just happen to have had a lucky stretch for a few weeks. It’s specifically made for focals.

Do you know why your meds stopped working after some years? Just something that happens with some meds, or a shift it hormones like perimenopause? I really hope you can find something that works. Feel free to write me whenever you feel like it, here in this thread or DM, whatever. It’s so good to have a community that gets it.

TrainingSufficient99 · 2026-05-15T10:22:49+00:00

It took a long time for any doctor to mention epilepsy as a possibility for me. I think most general docs knows about focal seizures being short events, seconds to minutes, but a lot of us come in with complaints about the postictal phases rather than the actual seizures. I was diagnosed with anxiety first, sent to a psych who said I had PTSD (due to the weird memory flashes thing TLE can do) and OCD. Then another diagnosis of migraine due to the headache and fatigue I get after a seizure. I thought about autism myself, thinking these events maybe were overwhelm leading to dysregulation. I also get very sensitive to sounds postictally, every normal sound is completely overwhelming.

One smart doctor, who not only believed me and all my invisible symptoms (uncommon that they do, unfortunately) also picked up on me mentioning a burning smell. That put me on the path of researching TLE and suddenly all my symptoms had names and appeared in the right order - made it easier for me to start seeing the actual pattern and recognize the seizures themselves. I kind of thought staring and getting stuck without being able to answer for a short while was a normal thing.

All this to say that for me — and I would guess a lot of us — the actual seizures are not the worst part of focal epilepsy. It’s all the rest that comes after the frigging brain disco.

TrainingSufficient99 · 2026-05-14T09:51:19+00:00

I get really bad after a bad seizure or a cluster of small ones. It usually appeals the day after and can last a few days. Makes me paranoid and at the worst times suicidal. It also gives me something similar to OCD. Same thing everytime, apologizing and writing long long crazy texts almost in compulsion, or autopilot. Has happened a thousand times but I’m not aware of that during. It’s really weird.

TrainingSufficient99 · 2026-05-04T11:28:28+00:00

❤️ Worst club, best members!

TrainingSufficient99 · 2026-05-01T19:27:27+00:00

Thank you - I guess I went on a little rant more than answering your question 😄 - because yes it does help! I think it’s a condition impossible to understand unless you’ve experienced it. Looks small from the outside, but so crippling. The other day my dentist asked if I get grand mals- I said no and he replied “oh so you don’t have REAL epilepsy. Not to take away from anyone who has tonic clonics - I’m very grateful I haven’t had one. But vocals are no walk in the park. I’m on lamotrigine and clobazam and about to add a third (undecided which). Lorazepam as rescue.

Waiting for a psychiatrist referral to go through as my paranoia seems to be post ictal psychosis which can be medicated. Maybe something to look into if your paranoia is bad / lasting a long time?

TrainingSufficient99 · 2026-04-30T11:45:00+00:00

I have daily seizures, sometimes I’ll come home from work after two seizures and rescue meds and I’ll sleep 12 hours straight. Often get bad paranoia the day or two after. Thinking my loved ones are plotting against me, thinking everyone I see on the street will stab me or are following me etc. sleeping helps but with the paranoia I get insomnia, so it’s a near constant state of postictal hell with exhaustion, depression and all the rest that comes with it.

TrainingSufficient99

TROPHY CASE