Possible epilepsy attack - How worried should I be?

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Aldar

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Hello,

I am writing here in a mix of panic, anxiety and desperation.

Last Friday, I had what was most likely an epileptic seizure - I woke up in a state of strange confusion / disorientation. Remember smelling a really weird scent as a strange feeling developed on the back of my neck, getting stronger and stronger, until eventually traveling down, along the spine and ending with a clenched down stomach. Then, still, I am not sure for how long, I was unable to effectively move. I was conscious, if somewhat dazed/confused, and whenever I tried anything that required bigger amount of strength (Like to lift myself), my muscles just couldn't produce it, and I ended up falling onto the ground where I then struggled to get back on my bed.

This strange state lasted for... I'm not sure, 15 to 30 minutes. And ultimately got me an ambulance ride to the hospital, where they didn't find anything wrong with me (Had complete blood work), and only gave me something for my sick stomach (Threw up several times on the ride there)

Since then, I've been feeling... Not myself. Focusing is hard, my mind is jumping all over the place, noticing things I usually ignore, and ever since the episode, I've also been suffering of diarrhea.

Overall, this has been a third time this series of events happened to me in the last year or two. Always starts with the weird feeling on neck and strange, out of place smell...

My question is - Could this be epilepsy? I do have an appointment scheduled with a professional, but as they're almost completely booked and will only be able to see me in about 3 weeks.

Also, if it was epilepsy, how worried should I be? I read quite a few articles that got me pretty heavily concerned, especially of the SUDEP syndrome and possible permanent brain damage from prolonged seizures.

Other health conditions I'm medicating for:
1 - Generalized anxiety (225 mgs of venlafaxine daily)
2 - Diagnosed with prenatal hydrocephalus (Ventriculomegaly)
3 - Due to witnessing that strange feeling on my neck with a feeling of dejavu even during normal day to day life, I've been put on 300 mgs of sodium valproate daily. Though not yet officially diagnosed with epilepsy.

Number of times similar sequence of events happened to me so far: 3 (With 2 times ending up in a hospital via an ambulance after the collapse)
 
Hi Aldar,
Welcome to the forum! Is there any possibility that you have a pinched nerve in your neck because it has been proven
that a pinched nerve can trigger seizures due to the lack of blood flow to the brain. The odd odor you smelt was what is
called simple partial seizure also called an aura seizure where the person is conscious, but they smell wierd odors for a few seconds.

Keep track of all these possible seizures by written them down on a calendar and describe what the seizure was like and write down
what time it happened. Also take note if you have been sick. You may want to try taking vitamin B12 it helps calm the nerves.
I wish you the best of luck and May God Bless You!

Sue
 
Yes, it could be epilepsy, especially with a history of hydrocephalus. Don't worry about SUDEP. For now, focus on getting enough sleep, eating healthy, and avoiding stress when possible. Avoid or cut out caffeine and stimulants. Then, look forward to your appointment. Do your best not to stress, use grounding techniques for your anxiety, etc.

IDK if you are having seizures for certain, but it's normal to be exhausted after a seizure, to have confusion, brain fog, deja-vu, and problems with memory or word finding, and to just feel miserable. If you have another one try not to "fight it" or "power through". It might go better if you just sit down when it starts and try to relax. It shouldn't last very long. Not being able to move or think might be frightening, but if you can't do it you can't do it. I find that if I fight it it's way worse. Afterwards take a nap and cancel the rest of the day (or even the next day), if you need to. If you get dizzy, be careful when getting up afterward.

At the hospital they should have given you an EEG. Ambulance rides are kind of "normal" for epilepsy, especially at first when you are figuring things out. You might make up a small bag or backpack to take to the ER, with ID, meds list, doctor phone numbers, pharmacy phone number, underwear, toiletries, slippers, pajamas, and a book or charger for your phone. It's good to have phone numbers and names because if you seize, you might not remember that stuff. You can have someone grab it and take it in the ambulance. The hospital has anything you forget, including snacks. They might keep you overnight for observation. That would actually be good because you would probably see a neurologist and get an EEG, and MRI. You can also sleep and not worry about anything. If the lights and beeping machines bother you, or if you are hot or cold, tell the nurses. They will want you to get rest.

Best wishes.
 
My question is - Could this be epilepsy? I do have an appointment scheduled with a professional, but as they're almost completely booked and will only be able to see me in about 3 weeks.

Also, if it was epilepsy, how worried should I be? I read quite a few articles that got me pretty heavily concerned, especially of the SUDEP syndrome and possible permanent brain damage from prolonged seizures.

Other health conditions I'm medicating for:
1 - Generalized anxiety (225 mgs of venlafaxine daily)
2 - Diagnosed with prenatal hydrocephalus (Ventriculomegaly)
3 - Due to witnessing that strange feeling on my neck with a feeling of dejavu even during normal day to day life, I've been put on 300 mgs of sodium valproate daily. Though not yet officially diagnosed with epilepsy.

Number of times similar sequence of events happened to me so far: 3 (With 2 times ending up in a hospital via an ambulance after the collapse)

Hi Aldar -- a few things jump out at me. First off, as Matthew says, don't worry about SUDEP or brain damage. Everyone is different but those outcomes are associated with different prognoses and paths than you describe. DO make sure you let your doc know about everything you’ve been experiencing -- any unusual symptom, large or small, your health history, family health history, medication history, anything different in your routine, etc. The strange smells you are experiencing prior to your episodes is associated with partial seizures (seizure that occur, but you stay fully or partially conscious).

Second, hydrocephalus can sometimes produce seizure-like symptoms -- make sure you let the neuro know.

Third, can you bring a friend or family member to your appointment? Often it helps to have someone to take notes and ask questions. Don't leave the doctor’s office if anything is unclear -- if they schedule additional tests, ask what they might show. If they talk about meds, ask about side effects, contraindications, how they might interact with your anxiety med etc.

And feel free to post here as often as you need -- we aren't doctors, but we can share anecdotal advice and heaps of support.

Best,
Nakamova
 
Hi Aldar,
Welcome to the forum! Is there any possibility that you have a pinched nerve in your neck because it has been proven
that a pinched nerve can trigger seizures due to the lack of blood flow to the brain. The odd odor you smelt was what is
called simple partial seizure also called an aura seizure where the person is conscious, but they smell wierd odors for a few seconds.

Keep track of all these possible seizures by written them down on a calendar and describe what the seizure was like and write down
what time it happened. Also take note if you have been sick. You may want to try taking vitamin B12 it helps calm the nerves.
I wish you the best of luck and May God Bless You!

Sue

Thank you, I do keep track of these attacks. So far, there were 2, or 3 (I'm not sure, can remember 2 for sure, as I was taken to hospital on both of those occasions) and do plan to pour over them and the similarities with a professional, soon, because I am still frankly nervous.

IDK if you are having seizures for certain, but it's normal to be exhausted after a seizure, to have confusion, brain fog, deja-vu, and problems with memory or word finding, and to just feel miserable. If you have another one try not to "fight it" or "power through". It might go better if you just sit down when it starts and try to relax. It shouldn't last very long. Not being able to move or think might be frightening, but if you can't do it you can't do it. I find that if I fight it it's way worse. Afterwards take a nap and cancel the rest of the day (or even the next day), if you need to. If you get dizzy, be careful when getting up afterward.

The part that still somewhat nags at my mind is that even now, almost a week after the episode, I still don't feel 100% like myself. Am still sick from my stomach, my attention is all over the place and I'm noticing things I wouldn't care about before. I might be just tired (Also, as much as I try, I haven't been sleeping the best), and don't know if that's just my anxiety playing tricks on my brain (Haha, psychosomatic symptoms suck), am still recovering from that seizure, or something more sinister is going on. And it's one of the primary reasons I want a checkup with a professional as soon as possible...

At the hospital they should have given you an EEG. Ambulance rides are kind of "normal" for epilepsy, especially at first when you are figuring things out. You might make up a small bag or backpack to take to the ER, with ID, meds list, doctor phone numbers, pharmacy phone number, underwear, toiletries, slippers, pajamas, and a book or charger for your phone. It's good to have phone numbers and names because if you seize, you might not remember that stuff. You can have someone grab it and take it in the ambulance. The hospital has anything you forget, including snacks. They might keep you overnight for observation. That would actually be good because you would probably see a neurologist and get an EEG, and MRI. You can also sleep and not worry about anything. If the lights and beeping machines bother you, or if you are hot or cold, tell the nurses. They will want you to get rest.

Yea, that one they didn't do, doc blamed it on food poisoning cuz of the stomach issues and throwing up. I had my ECG and blood work done, all in norm (Except for slight tachycardia, though that's somewhat normal for me, I'm 5'10" at 260 lbs) and so they gave me something to calm the stomach and let me rest for a bit. Then sent me home.

I did however manage to reschedule a checkup with my neurologist from October to the 22th this month, so, yay. Then a checkup with a neurosurgeon and one of the primary specialists concerning hydrocephalus here in the country on the 30th. And after all, last time I saw that doctor, he did say - If I develop any sort of malign symptoms like seizures to come for a follow-up... So it gives me hope this will the source...

Also note - Originally, I started going to a neurologist again because of milder dejavú attacks that I do have from time to time during the day. Those only last a minute, and leave me somewhat confused, tired and make my stomach cramp up, too, but less than these full on attacks as I had last Friday... And is why I was put on the sodium valproate tables, in hopes that that would be enough to stop these semi-seizures.
 
Also note - Originally, I started going to a neurologist again because of milder dejavú attacks that I do have from time to time during the day. Those only last a minute, and leave me somewhat confused, tired and make my stomach cramp up, too, but less than these full on attacks as I had last Friday... And is why I was put on the sodium valproate tables, in hopes that that would be enough to stop these semi-seizures.

I hope it helps. If they are seizures be aware that they're full-blown seizures. They sound like classic temporal lobe seizures (from what I've read). They may even be complex partials because it seems like your consciousness is affected in deja vu. They are just as important as bigger ones, and can be just as damaging when left uncotrolled. "Auras" are also seizures. Be respectfully assertive with your medical team about them because if they don't show up on an EEG, they may try to ignore them - even very good doctors. Not all seizures show up on EEGs.

Unfortunately since you've been diagnosed with anxiety, they will take your symptoms less seriously, so it may take some effort on your part to make sure you get the care and tests that you need. I imagine that seeing a neurosurgeon will get you a new MRI and an EEG.
 
I hope it helps. If they are seizures be aware that they're full-blown seizures. They sound like classic temporal lobe seizures (from what I've read). They may even be complex partials because it seems like your consciousness is affected in deja vu. They are just as important as bigger ones, and can be just as damaging when left uncotrolled. "Auras" are also seizures. Be respectfully assertive with your medical team about them because if they don't show up on an EEG, they may try to ignore them - even very good doctors. Not all seizures show up on EEGs. Whatever they are they need to be looked into.

Unfortunately since you've been diagnosed with anxiety, they will take your symptoms less seriously, so it may take some effort on your part to make sure you get the care and tests that you need. I imagine that seeing a neurosurgeon will get you a new MRI and an EEG.
 
Okay, a month and a day later, and I had another episode, same progress, same symptoms, only this time I didn't have to call the ambulance and slept for only the rest of the day. Now though, the most stressful part of the whole ordeal is going on -- What do you guys feel like coming out of a seizure?

As I also suffer of anxiety (Especially when it's something I cannot rule out by myself, like the state of my own brain), I'm not sure if what I'm going through right now is from the seizure, or it's just psychosomatic -- I'm... Tired, like, sleepy. Have troubles focusing, feel unlike myself, almost like I was... Half asleep, or in the state of transition between sleep and vigilance... And... Usually, it takes about a week or something to get back to normal... Can that be what I read about as the post-ictal phase of a seizure? Or is that something to worry about?

I'm currently awaiting a call from a specialist on hydrocephalus to hear their recommendation as to how to proceed...
 
Hi Aldar,

After I come out of a seizure I am confused for a few seconds and not sure where I'm at then I remember. I will feel tired and
often I have a headache the seizure. Once in a while after the seizure is over I will want to speak but I won't be able to I can't get
the words out it's like someone who had a stroke and they ended up with speech problems.

I'm glad to see that you keep track of your seizures take a look at last month and see if you had any seizures around this time,
if you did then it's a pattern in your seizures and it could be hormone related.

Wishing You the Best of Luck and May God Bless You,

Sue
 
Hello Aldar

If I've had a simple partial, I'm fine within about 10 minutes max. I can see/hear everything going on around me--I get a very hard to describe weird feeling that starts at the back of my head & moves to the front.
My complex partials are another story. I'm completely unaware of their occurrence unless another person witnesses them, I injure myself, or I do something to my surroundings. I just had one Friday evening while going to my basement & fell on the landing. Thankfully, my son was home & my mom was over.
I also record all my seizures in a notebook. I keep track of their time, length, location, & what I did during them (if there were any witnesses).
 
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