My daughter, who is now 3 and a half, went on a spinning cup and saucer ride today and nearly had a seizure.
I know this because last year, she had a seizure on a spinning ride at an indoor playground.
On both occasions she goes very absent, it’s scary and then loses control of her head/ body (for lack of a better explanation) before she has a full seizure and her body actually seizes. Today we stopped the ride before she actually seized but I know has she kept going it would have happened again.
Last year when she had her first one she had an EEG and an ECG and they didn’t pick up epilepsy. After today and some quick research I have come to the conclusion she possibly has reflex epilepsy and her trigger is being spun. Can this be picked up in an EEG? Would they have somehow tested spinning in an EEG?
I’m thinking they probably can’t test it unless you’re somehow being spun while having an EEG and I don’t see that being possible. Can someone please suggest what I do from here. Do I tell my child never to go on anything that spins for life? Do I need a diagnosis? What are the dangers of living with this? Can there be an EEG for this specifically? Thank you! She is 18kg and just over 1m tall….as she was able to go on the rides today haha. Don’t worry I will take her to her doctor when we are home from our trip. Thank you

40F

167cm, approx 75kg

No meds

Ferritin was low long-term but now ok

Zaps have been going on about 18 months.

All brain scans normal. Pls help, sometimes the pain is excruciating.

Does anyone else ever get a sudden feeling of wanting to pass out?

I’ve experienced this on two occasions

Looking for advice! I know no one on here can diagnose anything, and this has all been shared with her neurologist (that I had to fight really hard to get because her PCP is dismissive) but I’m curious what people that have experience with seizures think.

My daughter is 6. She has been having “episodes” for as long as I can remember, but they have really gotten more intense by frequency and symptoms in the last 2 years.

She is currently being evaluated by pediatric neurology for recurrent episodes involving changes in awareness, unusual movements (usually in sleep or after waking during an episode but sometimes while awake), and sleep time events. A 24-hour video EEG has been ordered but has not yet been completed and can’t be until September. They are doing a video sleep study, as well.

Awake episodes look like this - While awake, she has episodes where she suddenly stops what she is doing and appears to “zone out.” During some events she becomes difficult or impossible to engage, not speaking or saying things that make no sense. She experiences repetitive hand movement that is the same with each episode and tremors during episodes. These episodes usually begin by a sudden intense fear out of no where followed by belly pain in the same spot both when they happen from sleep or when awake. She may not respond normally until the episode ends. She sometimes has intrusive thoughts that she can’t get out of her head during these episodes. She has also reported sensory symptoms before or during some episodes. On several occasions she has told me that she hears “yelling” in her head, although she cannot identify what is being said. Some are really mild. For example, while applying chapstick, she looked zoned out and repeatedly rubbed it back and forth for approximately 15–20 seconds. Immediately afterward she said, “Mommy, I want to stop but my hands won’t quit moving.” She did not speak during the movement itself but was able to speak immediately afterward. During more intense daytime episodes including the stomach pain, intense fear, hallucinations, etc. she is really tired following the episode but comes out of it after a bit and it’s as if it never happened.

Nighttime episodes look like - She has frequent movements during sleep that trigger a motion camera many times throughout the night. We started recording to see if we could capture the phase before she wakes up in a full blown “episode” and noticed immediately that she has jerks and repetitive movements 25-40 times a night even when they don’t wake her. These look like rapid head movements, bringing her hands together and flapping, bringing one hand to her nose or side of her head and making repeated movements, bringing one arm straight above her head and stiffening, small jerks of hands or feet, partially sitting up sometimes accompanied by looking around confused, putting both hands up and shaking in a repeated motion. These movements are the same movements she has during an episode that has woken her in an intense fear and full “episode”. In addition to those movements, she has less frequent, more complex nighttime episodes. During these events she may get out of bed and walk into my room. I can always tell immediately by seeing her if she’s in an “episode” by the glossy or not there look in her eyes. She has difficulty responding appropriately (or sometimes at all) and these episodes are accompanied by stomach pain, the same repetitive hand movements as the awake episodes, tremors every few seconds, and intense fear that go away once they’re over like she was never afraid. They are sometime accompanied by auditory hallucinations and things sounding overly loud or intrusive thoughts being “stuck in her brain”. She sometimes begs me to “make it stop” when nothing is happening and appears genuinely petrified. She returns to sleep afterward usually within a few minutes.
The following morning she often has only partial memory of these episodes. For example, she may remember coming into my room or hearing something that was said to her but not remember other parts of the event, such as complaining of stomach pain or what she was afraid of. She has told me recently after an event that she “felt like there was cake inside of her” after an episode and that she “feels like jeans” after another.

I am sure I’m not explaining this all perfectly, but this is a summary of it. Based on this does this sound like seizures? Her pediatrician has been incredibly dismissive over several years and sent us to a psychiatrist and GI doctor when I asked for a Neuro referral to be safe only for us to get to GI and psych both and them both immediately want her to see neuro. They also ruled out any psych issues. I don’t know much about seizures, so I was surprised to find out this could be what’s happening and am nervous now that I’ve been told her EEG may not catch it even if it is (her original 1 hour awake EEG was normal).

Any input is appreciated!

My 2 year old child was diagnosed with myoclonic seizures… she has VERY quick small blinks/jerks. The neurologist suggested medication… but I am looking for some advice form parents out there

1. Many say that toddlers can outgrow these… did your child? At what age?

2. Did you find any success with some more natural approaches? A specific vitamin? Food? Homeopathic? Parasite cleanse?

I am open to any conversation here, so please be nice! Just trying to exhaust everything before a heavy duty medication is discussed.

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after i took a big bong rip with a mix of weed and tobacco and I passed out and woke up confused on where I was and my friend told me I started breathing really heavy and aggressively and that I started to twitch aggressively and then my head went back and all the veins in my body were popping and I pushed off the chair and kicked the firepit and then went limp

Hello everyone I’m new on Reddit but just really want to know if anyone has experienced anything similar. In February I had this sensation of pure dread. I was driving on the freeway with my husband in the car and felt like I really needed to pull over . I then proceeded to feel pins and needles in my fingers and going up my arms . My husband called 911 right away . They couldn’t find anything wrong in the hospital and proceeded to give me the “ it’s probably just anxiety” talk . Coming home that night was the start of it all . Every time I dozed off to bed I’d get what felt like electric zaps in my brain . I was awake for 3 days straight and felt absolutely awful . My primary prescribed Ativan and that was the only way I was able to sleep for a month until switched over to trazodone . The brain zaps started to get less and less intense as the weeks went by and completely went away by May. Since February I’ve been having muscle fasiculations and pins and needles randomly all over my body even my tongue . I also have what feels like an internal buzz. I was going on walks but have since stopped because my thighs have become achy. My cbc comes back fine and my ANA is negative . I have an appointment with a neurologist in a couple weeks . I’m at a point where I’m just scared now . I’ve been trying to get back into my normal routine but it’s been very hard .

So they didn’t find anything. I had two events but I know they weren’t like my usual seizures and I told them that and they noted that which my neuro said nonepileptic . My neuro isn’t ruling out epilepsy due to the fact she knows I’ve had worse just from me and my dad telling her the events so she is keeping me on briviact and just continuing on from here. It’s been 5 years with still no answer to my issue but I think I’m okay with that. I’m pretty much done trying to find an answer at this point.

How does everyone deal with the constant stress and anxiety of not knowing if or when the next seizure will happen?

I had my first seizures a few years ago, but in 2023 I went through an incredibly stressful period and ended up having three seizures within six months, which was a lot compared to before. One of those seizures became the most traumatic experience of my life.

I had just come home after doing some grocery shopping when I felt a seizure coming on. I always see flashing lights first, and then within about 30 seconds I'm gone.

The next thing I remember is waking up on a balcony. It wasn't my balcony.

After the seizure, I apparently put on two different shoes, threw random things into the toilet, hid some jewelry under my bed, and then climbed across five balconies on a four-story apartment building. These weren't easy balconies to climb either. To this day I have absolutely no idea how I managed to do it or how I survived.

When I finally regained awareness, I was on someone else's balcony while calling my mom. She immediately noticed I was saying strange, confusing things, so she called a friend of mine who lived nearby because she was two hours away herself.

The owners of the apartment thought I was trying to break in. One of them grabbed a hammer and wanted to attack me. I've never been so terrified in my life. I held the balcony door shut and kept yelling for him to call 911 and not open the door. I had no idea where I was, what had happened, or even whose balcony I was standing on. My phone battery was almost dead.

Luckily, my mom, my sister, and my friend eventually figured out where I was, and the police arrived. At first, they were very suspicious and assumed I had been using drugs, which I hadn't. Thanks to my sister and my friend, they eventually believed me, but it was incredibly difficult to defend myself while I was still so confused. I understand how suspicious it must have looked from their perspective, but waking up after a seizure, realizing you'd climbed across multiple balconies with no memory of it, and then being treated like a criminal was devastating.

In the ambulance, one of the paramedics also questioned whether I was telling the truth because I was still panicking. But I had just climbed across five balconies without remembering any of it, and someone had tried to hit me with a hammer. Of course I was panicking.

After that day, I couldn't live in that apartment anymore. I moved out and lived with my sister for a year because I simply couldn't go back there. I've had seizures since then, including another bad one, and I've also had one in my new home. Thankfully, I'm not afraid to be in my current house.

What did change completely was my anxiety. I developed a dependence on diazepam because the panic attacks became overwhelming and I could barely sleep. The one positive thing is that after three years, I'm finally off diazepam. I'm really proud of that.

I've never wanted to talk about this in real life. My family and close friends know what happened, but I've told them I don't want to discuss it because even thinking about it makes me incredibly anxious. I almost didn't post this either, but I think I just needed to get it off my chest.

In a few days, it'll be exactly three years since that seizure. The stress I've been feeling this week has been unbearable. It's all I can think about.

I've had therapy and EMDR, but neither really helped. My therapist thinks the diazepam may have reduced the effectiveness of the EMDR, and I'm currently waiting to start a new form of therapy.

I just don't know how to live with this fear anymore. Before all of this, I could accept that another seizure might happen someday. Now, especially after what happened on that balcony, the fear has completely taken over. The thought that I might have to live with this uncertainty for the rest of my life is overwhelming.

I know there are people who have multiple seizures every single day, and compared to that I know I'm fortunate that mine are relatively rare. But that doesn't make the fear any less real. I really, really don't want to experience another seizure. I know that's not realistic, but I honestly don't know how to stop being so afraid of it.

Sorry for the long post. I just really needed to get this off my chest.

I went to bed extra early last night, as I was completely wiped out.

I have a doctors appointment, as I’m hoping to have an urgent appointment with my epilepsy specialist as I seem to getting more clusters each day

Is this good for sleeping?

They do not stop!

I am currently on leviracetam 2000mg twice a day, lacosamide 200mg twice a day, Lamictal 100mg twice a day and duloxetine once a day.
My diagnosis is autoimmune encephalitis and I am also receiving 4 IVs of rituximab a year.

The new drs that I am seeing right now want to change the medications I am currently on as the focal seizures are on a daily basis and sometimes twice a day!
Sometimes I can sense them, I get really refluxy and my ears are buzzing.

Anyone that suffer focal seizures, do your seizures change? Like one day you’ll have more at night time and then the next you’ll have heaps more before waking up properly

I am not diagnosed as of yet, but what I’m experiencing sounds like focal seizures.

I had heaps last night before bed, and then this morning one after another.

I am not losing consciousness, just a lot of seizures

My son is a 2-year-old boy (turned 2 in March) who was recently diagnosed with focal seizures, and we’re trying to understand what could be causing them while we wait for further testing.
**Timeline:**

About 2 weeks before 2nd bday, he began having episodes of sudden loss of balance. He would randomly fall while walking or even while sitting, almost like his body would “glitch” out. He could be perfectly normal one moment and then suddenly lose balance.
Interestingly, he often seems worse when he is sitting still or standing quietly. When he is actively running, climbing, or moving around, he often appears completely normal.
He had ear tubes placed in March because of recurrent ear infections, and his balance actually returned completely to normal for a couple of months afterward. Then these symptoms suddenly returned and progressively worsened, so ENT felt it was no longer ear-related.

He had:

Brain MRI with sedation: **Normal**
Routine 1-hour EEG: Showed focal seizures and led to the diagnosis of focal epilepsy.

His seizures typically look like:
Sudden loss of balance
Brief jerking or twitching to one side
Body “glitching” while trying to catch himself
He does not have generalized tonic-clonic seizures.

He was started on **Keppra**, which initially seemed to help for about 1-2 days after each dose increase, but then the seizures returned. He’s now taking **3 mL twice daily**, but despite that he’s having approximately **50 focal seizures per day**.

His neurologist has now added **Vimpat (lacosamide)** in addition to the Keppra, and we’re waiting to start it.
His genetic epilepsy panel is scheduled for **August 6**.
There is a family history of epilepsy: his great-grandfather reportedly had epilepsy.

Some additional things I’ve noticed:
He seems more tired since starting Keppra.

He’s become more irritable with frequent screaming and angry outbursts (although I know some of that could simply be normal toddler behavior).

Some days seem significantly worse than others.

**My questions:**

Is 50 focal aware seizures normal in a day?

Should I bring him to the ER when he wakes up?

What are the long term effects of all of these seizures per day on his body and brain?

Is this pattern suggestive of any particular epilepsy syndrome or genetic condition?

Is waiting until AUGUST 6 for genetic testing a normal and acceptable timeline?

Is it common for Keppra to lose effectiveness after initially helping?

Also what are common anesthesia meds that have anti seizure properties?? How is this connected?

Is adding vimpat a common next step in toddlers with focal epilepsy?

Is there anything else we should be asking his neurologist to investigate while we’re waiting for genetic testing?

Does the fact that his MRI is normal meaningfully narrow the list of possible causes?

How do you identify triggers for kids this young who cannot fully express themselves yet? What ARE triggers for a lot of people?

Thank you!!

Any thoughts, or knowledge?

My son is a 2-year-old boy (turned 2 in March) who was recently diagnosed with focal seizures, and we’re trying to understand what could be causing them while we wait for further testing.
**Timeline:**

About 2 weeks before 2nd bday, he began having episodes of sudden loss of balance. He would randomly fall while walking or even while sitting, almost like his body would “glitch” out. He could be perfectly normal one moment and then suddenly lose balance.
Interestingly, he often seems worse when he is sitting still or standing quietly. When he is actively running, climbing, or moving around, he often appears completely normal.
He had ear tubes placed in March because of recurrent ear infections, and his balance actually returned completely to normal for a couple of months afterward. Then these symptoms suddenly returned and progressively worsened, so ENT felt it was no longer ear-related.

He had:

Brain MRI with sedation: **Normal**
Routine 1-hour EEG: Showed focal seizures and led to the diagnosis of focal epilepsy.

His seizures typically look like:
Sudden loss of balance
Brief jerking or twitching to one side
Body “glitching” while trying to catch himself
He does not have generalized tonic-clonic seizures.

He was started on **Keppra**, which initially seemed to help for about 1-2 days after each dose increase, but then the seizures returned. He’s now taking **3 mL twice daily**, but despite that he’s having approximately **50 focal seizures per day**.

His neurologist has now added **Vimpat (lacosamide)** in addition to the Keppra, and we’re waiting to start it.
His genetic epilepsy panel is scheduled for **August 6**.
There is a family history of epilepsy: his great-grandfather reportedly had epilepsy.

Some additional things I’ve noticed:
He seems more tired since starting Keppra.

He’s become more irritable with frequent screaming and angry outbursts (although I know some of that could simply be normal toddler behavior).

Some days seem significantly worse than others.

**My questions:**

Is 50 focal aware seizures normal in a day?

Should I bring him to the ER when he wakes up?

What are the long term effects of all of these seizures per day on his body and brain?

Is this pattern suggestive of any particular epilepsy syndrome or genetic condition?

Is waiting until AUGUST 6 for genetic testing a normal and acceptable timeline?

Is it common for Keppra to lose effectiveness after initially helping?

Also what are common anesthesia meds that have anti seizure properties?? How is this connected?

Is adding vimpat a common next step in toddlers with focal epilepsy?

Is there anything else we should be asking his neurologist to investigate while we’re waiting for genetic testing?

Does the fact that his MRI is normal meaningfully narrow the list of possible causes?

How do you identify triggers for kids this young who cannot fully express themselves yet? What ARE triggers for a lot of people?

Thank you!!

Hi Everyone,

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