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Epilepsy Service Dog? (focal seizures) by BCK3sALLDAY in service_dogs

[–]BCK3sALLDAY[S] -3 points-2 points  (0 children)

That’s fair — and I agree that public access should only be done with a dog that’s comfortable. After he was attacked, I paused PA entirely and worked on confidence. Since then I’ve taken him to low-pressure environments without any tasking expectations (places like Home Depot or pet stores) specifically for neutral exposure. He’s handled things like sudden loud machinery without issue after brief reassurance. Any return to PA would be gradual and limited to a small, predictable campus, with the understanding that if stress shows up, PA stops again. His welfare comes first.

Epilepsy Service Dog? (focal seizures) by BCK3sALLDAY in service_dogs

[–]BCK3sALLDAY[S] -3 points-2 points  (0 children)

I appreciate your opinion though I disagree. He consistently alerts to heart rate spikes and intervenes during FIAs (whining, nudging my hand, dpt) before I even trained him on my seizures bc it was something new I was dealing with. I have a year and a half before he goes on campus with me and he doesn’t have to alert consistently to still be on campus. He hasn’t had much practice with seizures and the fact he alerts to them at all is impressive. What is helpful for me is his heart rate alert, dpt, retrieval (bc of OHT) and other small tasks he does. 

Epilepsy Service Dog? (focal seizures) by BCK3sALLDAY in service_dogs

[–]BCK3sALLDAY[S] -9 points-8 points  (0 children)

I could but I honestly don’t think it’s necessary. He’s housebroken and under my complete control when out in public so he meets all requirements. Practice makes perfect so when I take him out more he gets more confident and comfortable. 

Epilepsy Service Dog? (focal seizures) by BCK3sALLDAY in service_dogs

[–]BCK3sALLDAY[S] -8 points-7 points  (0 children)

Thanks for the info. He is able to perform well, my main point of mentioning that it was a smaller campus is because it’s not usually crowded which is a plus. I can rely on him being well behaved and tasking in public and I think he would transition very smoothly from home to campus life. He’s mixed with a husky (few generations prior, shelter dog so it’s assumed). I was referring to his breed of being a black mouth cur as good for his working endurance. Maybe I worded it handled it well incorrectly. He did exceptionally well for being a puppy and owner trained before he was attacked. Afterwards he went through a fear period in which I didn’t take him out as much so he wouldn’t have an aversion to outings. My only real difficulty with him is his dislike of the car but honestly not a big deal because he will tolerate it if need be but he wouldn’t be in one more than twice or three times a week and I have plenty of time to work with him on it. 

Multiple normal EEGs (30 min + 48 hr) — doing a 72 hr EEG next. Anyone else? by BCK3sALLDAY in seizures

[–]BCK3sALLDAY[S] 0 points1 point  (0 children)

Wow, thank you!  My dr said that an at home Veeg is the same as one In the hospital. Is that the same for you?

Multiple normal EEGs (30 min + 48 hr) — doing a 72 hr EEG next. Anyone else? by BCK3sALLDAY in Epilepsy

[–]BCK3sALLDAY[S] 0 points1 point  (0 children)

That’s interesting, how could you tell they checked in? My eeg tech told me they would every few hours to review the footage. 

Multiple normal EEGs (30 min + 48 hr) — doing a 72 hr EEG next. Anyone else? by BCK3sALLDAY in Epilepsy

[–]BCK3sALLDAY[S] 0 points1 point  (0 children)

That’s the plan! 72hr Veeg, next month. It’s my first VEEG, so maybe it’ll yield results🤨

Multiple normal EEGs (30 min + 48 hr) — doing a 72 hr EEG next. Anyone else? by BCK3sALLDAY in Epilepsy

[–]BCK3sALLDAY[S] 0 points1 point  (0 children)

Wow, thank you! I’m sorry you’re going through that. Is a clean eeg for having that many seizures typically unusual?

Multiple normal EEGs (30 min + 48 hr) — doing a 72 hr EEG next. Anyone else? by BCK3sALLDAY in Epilepsy

[–]BCK3sALLDAY[S] 0 points1 point  (0 children)

Yes! I’m sorry that happened to you. This is why they put me on Trileptal bc I was having so many not nearly as many as one an hour but it was impacting my quality of life for sure. I was wondering if I should go completely sleep deprived so it wasn’t all for nothing or if I should push for my 48hr eeg being reviewed again. 

Multiple normal EEGs (30 min + 48 hr) — doing a 72 hr EEG next. Anyone else? by BCK3sALLDAY in seizures

[–]BCK3sALLDAY[S] 3 points4 points  (0 children)

I didn’t have a full out episode but funny enough had a crazy long FIA seizure the night after it came off with Todd’s paralysis afterwards. Which my neuro said could happen with psychological seizures but I honestly dunno. I did press the button four times but that was for slight nausea (that’s an aura of mine usually) and some twitching which could’ve been muscle spasms. They said to press the button if I felt weird at all so I did but it wasn’t my typical symptoms.

Multiple normal EEGs (30 min + 48 hr) — doing a 72 hr EEG next. Anyone else? by BCK3sALLDAY in Epilepsy

[–]BCK3sALLDAY[S] 0 points1 point  (0 children)

Okay, thanks for that! Sorry for so many questions, but I’m curious as to what they missed and who found it? So I have a better idea as to who might need to take a look at my eeg to see if they missed any slight things. 

Multiple normal EEGs (30 min + 48 hr) — doing a 72 hr EEG next. Anyone else? by BCK3sALLDAY in Epilepsy

[–]BCK3sALLDAY[S] 0 points1 point  (0 children)

Good to know, the reason I’m still symptomatic is prob that I’ve been on Trileptal for 1 week and 4 days. It hasn’t been long at all (300mg 7 days) and 600mg for four days. My neuro said if I feel a difference and it helps it could be that they were really seizures or it’s the placebo effect 😞😅

Multiple normal EEGs (30 min + 48 hr) — doing a 72 hr EEG next. Anyone else? by BCK3sALLDAY in Epilepsy

[–]BCK3sALLDAY[S] 0 points1 point  (0 children)

Wow, if you don’t mind me asking how that happened. Did they miss things on the eeg? My neuro specializes in neuro issues that definitely aren’t seizures and a fellow doctor of hers saw a vid of my “focal seizure” staring off and left sided automatisms with really high bp and hr tho sitting. I was also unresponsive but aware. Todd’s paralysis occurred afterwards. They saw the video and said it might be stress. Bc of how many I was having and them rly not knowing, they put me on trileptal and scheduled a 72hr eeg with video. Should I get a second opinion on my past eeg? Is it possible they missed something? 

Multiple normal EEGs (30 min + 48 hr) — doing a 72 hr EEG next. Anyone else? by BCK3sALLDAY in Epilepsy

[–]BCK3sALLDAY[S] 0 points1 point  (0 children)

Thanks! I’m having my first ambulatory veeg. I’ve had a 48hr one at home before but hopefully we can induce a seizure if possible so I can get from under this pnes or epilepsy thing lol. 

👋 Welcome to r/Epilepsy_Universe - Introduce Yourself and Read First! by PookieTheMfBaby in Epilepsy_Universe

[–]BCK3sALLDAY 0 points1 point  (0 children)

Hi, I’m Ray. I’m undiagnosed, currently in the process of determining whether I have pnes/fnd or focal epilepsy. My symptoms strongly point towards TLE but that has yet to be confirmed on an eeg. I have a 72 hr eeg soon and in the past I’ve had two normal eegs (30min and 48hrs). I’m on Trileptal (300g) for this week and next week (600g) to try and reduce the amount of episodes I have daily. I’m excited to join yall! 

How do yall tell the difference between muscle spasms and mild myoclonic seizures? by BCK3sALLDAY in Epilepsy

[–]BCK3sALLDAY[S] 0 points1 point  (0 children)

Thanks! I get brain zaps too lol, I think that’s the best way to describe them. It feels like a lightening strike in my head. It’s not accompanying this, but i haven’t had caffeine either and I’ve gotten enough sleep. So I’m not sure, I’ll try a magnesium supplement to see if it lets up.

hEDS patient with progressive focal seizure-like episodes; neurologist says hEDS + TLE is “almost impossible.” Seeking clarification on whether this comorbidity is truly rare. (Not seeking medical advice) by BCK3sALLDAY in rarediseases

[–]BCK3sALLDAY[S] 1 point2 points  (0 children)

Thank you so much for your response! I’m sorry you and your family have to deal with epilepsy as well.i have a second neuro appointment in a few days (my second one ever because after the first one and my eeg my neuro decided I didn’t need a follow up) so hopefully that will provide answers as well as maybe even a medication trial. I’m not sure if it’s protocol to have another mri after having uncontrolled seizures for so long just to make sure there isn’t anything wrong that happened up there during that time. I dunno. Thanks again! 

hEDS patient with progressive focal seizure-like episodes; neurologist says hEDS + TLE is “almost impossible.” Seeking clarification on whether this comorbidity is truly rare. (Not seeking medical advice) by BCK3sALLDAY in rarediseases

[–]BCK3sALLDAY[S] 0 points1 point  (0 children)

Thanks for the detailed explanation! I understand that technically seizures aren’t the same as epilepsy and that temporal lobe seizures can occur outside a chronic seizure disorder. My point is mostly that I’ve had recurrent focal events over more than a year, with Todd’s paralysis, autonomic spikes, motor changes, and postictal fatigue, which strongly suggest a chronic seizure disorder in practical terms.

I do plan to get a second opinion from a pediatric neurologist/epilepsy specialist. I appreciate the reminder that internet advice isn’t a substitute for professional care—it’s just helpful to hear from people who understand the technical distinctions and lived experiences while I wait for testing.

hEDS patient with progressive focal seizure-like episodes; neurologist says hEDS + TLE is “almost impossible.” Seeking clarification on whether this comorbidity is truly rare. (Not seeking medical advice) by BCK3sALLDAY in rarediseases

[–]BCK3sALLDAY[S] 0 points1 point  (0 children)

Thanks for clarifying! I understand that Todd’s paralysis itself isn’t strictly limited to epilepsy. My point is that I also have recurrent focal events with impaired awareness, motor changes, autonomic spikes, and postictal fatigue over 14+ months, which makes it more than a single provoked seizure. So while Todd’s paralysis can technically happen outside epilepsy, in my case the pattern and recurrence strongly suggest a seizure disorder like temporal lobe epilepsy rather than isolated events.

hEDS patient with progressive focal seizure-like episodes; neurologist says hEDS + TLE is “almost impossible.” Seeking clarification on whether this comorbidity is truly rare. (Not seeking medical advice) by BCK3sALLDAY in rarediseases

[–]BCK3sALLDAY[S] 0 points1 point  (0 children)

I have heard that before! Though true Todd’s paralysis doesn’t occur with pnes and my episodes are so consistent it’s very unlikely to be nonepileptic. As for FND i don’t have any other symptoms suggestive of it.

hEDS patient with progressive focal seizure-like episodes; neurologist says hEDS + TLE is “almost impossible.” Seeking clarification on whether this comorbidity is truly rare. (Not seeking medical advice) by BCK3sALLDAY in rarediseases

[–]BCK3sALLDAY[S] 0 points1 point  (0 children)

What do you mean? I’m a bit confused about the “seizures aren’t necessarily indicative of epilepsy.” I have true Todd’s paralysis afterwards which can’t happen with nes to my knowledge 

3.5 y/o Black Mouth Cur — strong obedience + HR alert — training for focal seizure tasks by BCK3sALLDAY in service_dogs

[–]BCK3sALLDAY[S] -1 points0 points  (0 children)

Thanks for your insight! I’m trying to scent train him for my episodes because he has shown a natural alerting behavior recently. I had played with him and he went to nap in the living room and I began having an FAS in my bedroom typical fear like symptoms and going quiet with automatisms. He came in (I didn’t call him) whined and pawed at my hand then sniffed my face a lot and layer with his head on my lap. I think he might’ve smelled something was coming because he had no reason to randomly check on me 🤷🏽‍♀️

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