Seizures while I sleep

My sister was diagnosed the same way. She had them without reason. She’s had every test, sleep study, etc. The doctors told her it had to been something that happened when she was little. She never had seizures till she was older. She talked to our mom and mom didn’t remember anything. Then one day she remembered when my sister was little my mom had turned to talk to one of my brothers and was in a stroller my sister was rocking the stroller and the stroller fell over and she hit her head on the pavement. No blood or anything just a bump on her head.
Her seizures happen even just laying on the couch watching t.v. She used to have a bird that would sense when she was going to have one and she would lay on the floor. They are a little more under control but now she has lupus and her kidneys are starting to shut down. She has gluten allergies and all kinds of little things.

@stauggroomer35
So sorry to hear that. I did have a fall back before I was 5 I am not seeing how 41 years later that would cause now but I am no doctor lol. I have had aunt and uncles with Lupus but I have had blood test that would go around lupus but nothing showed and that doctor stated most insurance won’t cover that lab work so now just sitting and waiting and hoping for no more. Thank you for sharing and prayers for you and your family. Have a good day and good luck.

I had talked to my mom again about my sister and apparently my moon never realized that she did show signs of having very mild seizures when she was little. The staring into space kind. Keep in mind this was different times and having 3 kids not even a year apart and 1 other only a few years. Also an absent father it was hard to keep up. My sister growing up never realized that’s what those were was a type of seizure but as she got older they changed.
Her Lupus went undiagnosed for years even though she was negative till about 5-6 years ago.
My sister is my half sister she also deals with Raynauds which I have too but mine is for a different reason (still have been diagnosed with yet the cause. I was told could take years before I know) but on all sides there is autoimmune. Raynauds I get sores and have Fibromyalgia but only in certain areas. I won’t go into the others that have autoimmune. Maybe you did show signs even very small ones that are unnoticeable to even you. Sometimes it just takes something in your body to change even going under anesthesia can activate something in you. It’s hard to say. I do pray you get the answers you’re looking for and don’t give up. ❤️🤗

@stauggroomer35
I was also told I have Raynauds and I know I have arthritis in other parts of my body. Have only been put under 2 times in my life. I am just thankful so far they have only happened in my sleep just the not knowing why is what gets to me. And to my knowledge I haven’t never had before. Neurologist said my waves happened more on the left side of my brain and the part that scares me with that is effects are memory and mood and dementia and altimers run on my mothers side so does that mean I will get worse!? But no one can answer that so I just have to keep going. Thank you for your kind words.

You are not alone. I also have nocturnal seizures. I was started having seizures out of nowhere very shortly after I had my first son at age 19; maybe 2 months afterward. Ironically, I was working as a 911 dispatcher at the time and was in training that day with my coworkers in a packed restaurant. Next thing I know Im strapped down being wheeled into the hospital and didn't know a dang thing. I was extremely confused. The ladies I was with said I kind of looked confused and outstretched my arm and backhanded one of them in the chest and just slumped down underneath the booth and went into a tonic-clonic seizure. The medics had to give me oxygen because I wasn't breathing. Talk about scary! This was over 20 years ago and I have had them since. EEGs, MRIS have been done multiple times over the years and have always been negative. My father has had 2 or 3 bad seizures, so maybe he passed the lovely condition down to me?

I started on Keppra and had horrible rage on it so I took myself off of it and have since for many years been on Depakote. It seems to keep them under control. I was having them quite often for awhile and now havent had one in almost 6 years! Woohoo! However, I recently started the menopause phase a couple years ago (I just turned 40) and am now experiencing syncope (fainting) episodes quite often. If its not one thing its another, right?! LOL. I started BHRT in October, which I have a feeling is related to my syncope episodes. I just got my cardiac monitor results back this week and am waiting on my Neurologist to go over them with me. My son has two congenital heart defects I have been tested for and those were negative, so somethings going on somewhere.

Just know, we are rooting for you and you are not alone in this fight! If you ever need someone to talk to who's going through it as well feel free to reach out. Take care and good luck!

Ashley

Man sorry to hear about all you have been through. Glad those meds are working for you. I will be 50 this year and haven’t had menopause yet maybe premenopausal but not yet. I just can’t understand why after all these years it’s happening. I know the at home EEG showed sharp waves on left more than right and that’s causes them. Luckily have all been in my sleep and not out at work or driving that I am thankful for. I probably have a few other issues but trying to figure out this before I move on with anything else. Thank you for your reply and hope you continue getting answers. Take care have a good day.

Hi @stauggroomer35 !
I believe we haven't yet had the opportunity to chat with one another. Thank you so much for sharing your sister's epilepsy journey with us!
I've lived with undiagnosed epilepsy for decades. I had an accident when I was 5 years old and started to have some very mild and brief seizures (auras) on rare occasions in puberty, mostly unnoticed by people around me. As the years went by, some of these seizures evolved into complex partial seizures — first very mild ones, and then stronger ones after my forties. Finally, in 2019, at 48 years of age, I got my diagnosis of temporal lobe epilepsy (I'm 55 today), and one year later, TLE with mesial sclerosis, which is known to be highly refractory. As it was explained to me, because my epilepsy went untreated for decades, my seizures evolved over time.
@crissyh76, I wonder if the same has happened to you? Did you perhaps have any strange sensations — like strange smells, tastes and/or sounds, or a feeling of déjà vu (a feeling something is familiar when it's not), or jamais vu (feeling something familiar is new), or staring into space — before your first diagnosed seizure at 46? These sensations were very familiar to me in puberty and early adulthood — I had experienced strange smells and tastes together with déjà vu sensations that felt like watching a scene I had already lived through. Later, I started to have brief episodes of staring into space.
I'm curious to know what kind of epilepsy you have. Would you mind sharing that with us?
Last but not least, I know that feeling of living in anticipation of the next seizure all too well. Working alongside my neuropsychologist and neurologist helped me make peace with it. I take extra care, yes — but I do not hand epilepsy the wheel.
Let's keep fighting and never give up! 🤜💜
Chris

@asusan
Hi Ashley!
Nice to be chatting with you for the first time.
What a story: working as a 911 dispatcher and ending up as the emergency yourself! I'm so glad you were not alone that day.
I'm happy to know that Depakote has been working so well for you. Keppra has been added alongside my pure CBD oil since December 2024. Thankfully, no rage episodes — though I have experienced other side effects. Even so, it has been the AED that has caused me the least side effects overall. As my doctor always says, everyone is unique, even two people with the same diagnosis.
Hormonal shifts are well known to affect women with epilepsy. I recently came across a video on menopause in women with epilepsy and found it so interesting that I wanted to share it with you. Although it is in Portuguese, you can enable English subtitles directly on YouTube.
Epilepsy & Menopause
LBE - Brazilian League of Epilepsy

No strange smells or anything I can think of. The only other thing was about 2 years ago I started getting this hard to explain but I would scroll and be reading and they would be like what I call a riddle but everything was tied together it just kept going and would freak me out until I would shut it down and regroup. It also happens when I am talking with 2 people and they go back and forth to the point I have to tell them to be quiet or leave. Doesn’t happen all the time though. Other than that none that I can recall.

This what my neurologist said after my 48hr EEG
findings suggest interictal manifestations of most likely a focal epilepsy with potentially bilateral temporal epileptogenic foci (left>right).

Hi @crissyh76
Thank you for the details you've shared. Those hard-to-explain feelings you mentioned might be what is called a prodrome — a set of early warning signs such as feelings, sensations, or behavioral changes that can occur hours or even days before a seizure. A prodrome is not a seizure itself, just a warning that one may be coming. I only started noticing my own prodromes a few years ago — perhaps they were there earlier in a milder form, but I wasn't paying much attention to them. Yoga has helped me become much more attuned to what my body is telling me. Since your seizures occur during sleep, any auras would most likely go unnoticed.
Based on what your neurologist told you after your 48-hour EEG, I'm wondering whether you might have temporal lobe epilepsy. This type of epilepsy can be highly intractable when combined with mesial sclerosis on the temporal lobe. I'm sharing this based on my own experience — I have mesial sclerosis on my left hippocampus. My first MRIs were all clear until a high-precision MRI revealed this small sclerosis on my hippocampus. If you'd like, I can send you a link that explains this type of temporal lobe epilepsy in more detail.
Curiosity, the seizures you experienced happen hours or days after those strange sensations you described?
Chris