Seizures? Memory issues? Or something else?

[Suraya]

Hello everyone,

I hope everyone is doing as well as can be. Please accept my apologies as I think I may have posted something about seizures years back. I have an AVM in the right temporal lobe that ruptured in 2013 and in the last years or so, after the birth of my children, we found that I get microbleeds.

I had 2 neurosurgeons. Both very good and one who has a lot more experience. My primary neurosurgeon suggested embolization after the second angio, due to the microbleeds, and I finally gave in but Covid happened and took that as a sign to leave things as is. The other Neuro had advised against it as my symptom is only pain, irrespective of severity. However, he did mention that if I had seizures, then he’d probably look at radiation. My primary Neuro passed away over a year ago and his wife refused to give me my medical file, later claiming it was lost perhaps and couldn’t be found. I reached out to the medical council here in South Africa but nothing came of it.

Recently I’ve noticed changes in myself. Some of it may be due to stress and other medical issues potentially (will know within the next month), but I’ve noticed there are times when I sometimes can’t recall things said/done from a short term memory perspective. I’m tired a lot as well and my insomnia is either out of control, or times where I’m oversleeping, basically, sleep patterns are completely off.

However, something struck me as odd recently and haven’t had a chance to get to the Neuro as he’s not locally based, but will be making a trip soon hopefully. I haven’t had a seizure in the traditional sense of the word. I have noticed at times trembling in my hand or leg on my right hand side, which I chalked up to perhaps too many meds that day. I’ve also felt trembles inside my body. As if my body is the outer shell and still but the insides are “shaky”. This happened just once or twice at most. I’ve also noticed (not at the time but retrospectively) there have been times that I may have “zoned out” and then suddenly awake and realize what’s happening around me. Probably lasted less than a minute, but I did read somewhere that there are seizures that present itself in this way, where it’s like you’re in a trance but don’t know it until “you come to”.

I have the usual symptoms (pain is constant), such as hearing blood flow throughout my body, tinnitus, beating/throbbing feeling in my ear (either side, but predominantly on the right side).

If anyone’s experienced anything like this, I’d love to hear your experiences.
Thank you for reading this if you made it to the end of this long post.

Best wishes to everyone.

Suraya

[DickD]

Hey Suraya,

I hear you! I can’t say I have any symptoms these days, as I had an operation in 2017 to close off my AVM with an embolization procedure.

How long is it since you had a scan of your AVM? I’m thinking it would be good to start with the new neuro that you have in mind and if it has been a long time since any scans were done, it probably is best to just have new scans done. These things do change a bit over time, so knowing what is the case rather than what was the case is probably most important.

I don’t have any first hand experience of seizures or even of much in the way of migraine but from reading a book called Migraine some time ago, the symptoms you describe do sound like they are in those kind of areas: they might be migraine-like or they may be more seizure-like or a bit of a mix, so getting checked out seems like a good plan.

Very best wishes,

Richard

[Kall6000]

Hello, Suraya! Some of those symptoms sound a lot like my auras (zoning out, memory issues, and sudden fatigue). I have intense focal seizures, but I’ve recently learned that migraine seizures can show similar symptoms. Hope you find some answers soon!

[Adrian1]

I have had similar symptoms of ‘zoning out’, memory issues etc over the years and have had multi checks with EEG’s and so on but nothing conclusive has came back… during those times I was concerned I realised I had been super stressed and had lack of sleep with newborns.

I put it down to this, as lack of sleep and stress affects everybody, so imagine what it does to us who have had any brain trauma.

If concerned I would ask for checks from your Neuro to help but would also try my hardest to minimise stress and get better sleep… God bless!

[mike_az_21]

Sounds a bit similar to me at the moment. I didn’t think much of it - but, yes - I feel a tad too forgetful at times, along with zoning out. I also have been getting what I’d call trembling in my hands, it comes & goes.

Out of nowhere I’ll feel something similar to if I haven’t eaten all day. But, I make sure to eat all day & drink plenty of fluids.

I’m used to dealing with all of this now, but it just slows me down & just sets me back.

Thankfully, no seizures for me