Age 30, first seizure, what’s happening?!?

[Kaityokaina]

I had a tonic clonic seizure August 3. I’ve been trying to piece my life together since.

I was alone with my 6 yr old daughter when it happened. She called my partner who then called an ambulance. I had seized for over 20 minutes before they arrived!

I remember almost nothing. I woke up to my mom sitting in my rocking chair and I remember thinking “what the fuck?”(she lives 3 hrs away) My whole body ached, my tongue was so swollen I could barely talk, and I was exhausted and confused.

But I barely remember the weeks before my seizure or the week after. Is this normal to have such a HUGE gap in memory???Apparently I’d gone fishing with a friend and my family the week after, and I can’t recall a second of it.

I had a CT, EEG, and MRI. All were normal.

On Sunday Aug 22 I was making lunch for my daughter while I visited my mother. I felt kind of weird but put it off, thinking I was just being paranoid. But just looking at my own arms felt weird. I can’t explain it. It’s like, usually you’re not very aware of how your own body looks while you’re going through your day, but for some reason my own body just felt so unusually obvious and noticeable. Again, I was like “oh, it’s ok. I’m just paranoid” My mom came into the kitchen and I was talking with her but words were hard to find and they felt thick on my tongue when I spoke. Then my heart started racing and my body felt kind of light and tingly and so I said “I feel kind of weird”

I walked into the living room and immediately had to sit on the floor. My body felt so heavy I had to lay down. My mom came up to me and rubbed my back, telling me I was ok. All of a sudden I felt like I was falling and there was nothing to catch me, I couldn’t stop falling, and I whimpered “Oohh mommmy” And I thought it was coming. I was sure I was going to have another seizure. But in a minute or 2 it just passed.

I was completely conscious the whole time. But words just felt slow and difficult a few minutes before and after I had had to lay down.

Was this another seizure?!? What happened?!? I have not quite felt the same since even right before I had that prolonged tonic clonic seizure on Aug 3!

What is wrong with me? Am I ever going to feel ok again? I’m trying to keep my shit together, but inside I’m a mess. I’m just so scared and confused. Any advice on how to cope?

(I finally get to meet a neurologist on September 10. Desperately hoping for answers.)

 

[Porkette]

Hi Kaityokaina,

Welcome to CWE! I'm sorry to hear that you had your first seizure sometimes this may happen only once in a persons
life and never again. It's normal to feel a little sore after a tonic clonic seizure for a couple of days and to be exhausted
and confused that's what happens when a person has a seizure.

The tingling you felt is also part of a seizure. You mentioned that your heartbeat was rapid sometimes heart problems
can trigger seizures. You need to be sure you are getting plenty of rest and stay away from the stress because these
are the 2 main things that trigger seizures. Also stay away from diet soda or anything with nutrasweet in it because
that can fire up the neurons in the brain and can trigger more seizures for some people.

If you haven't started keeping track of your seizures get a calendar and write down what time the seizure happened
and the type of seizure you had by doing this the Dr. may be able to see a pattern in your seizures. I often have them
when there's a low pressure in the weather and when hormones are changing each month. I have found that cbd
(med. marijuana) has decreased my seizures very low.

I wish you the best of luck and May God Bless You!

Sue

 

[Heavy Kevy]

I had a CT, EEG, and MRI. All were normal.

This is good news
Take a deep breath and wait to hear what the neurologist says.

 

[Kaityokaina]

Hi Kaityokaina,

Welcome to CWE! I'm sorry to hear that you had your first seizure sometimes this may happen only once in a persons
life and never again. It's normal to feel a little sore after a tonic clonic seizure for a couple of days and to be exhausted
and confused that's what happens when a person has a seizure.

The tingling you felt is also part of a seizure. You mentioned that your heartbeat was rapid sometimes heart problems
can trigger seizures. You need to be sure you are getting plenty of rest and stay away from the stress because these
are the 2 main things that trigger seizures. Also stay away from diet soda or anything with nutrasweet in it because
that can fire up the neurons in the brain and can trigger more seizures for some people.

If you haven't started keeping track of your seizures get a calendar and write down what time the seizure happened
and the type of seizure you had by doing this the Dr. may be able to see a pattern in your seizures. I often have them
when there's a low pressure in the weather and when hormones are changing each month. I have found that cbd
(med. marijuana) has decreased my seizures very low.

I wish you the best of luck and May God Bless You!

Sue

Thank you so much for the advice. I will start keeping track of seizures as well as try to relax and sleep better. Unfortunately, I’ve found myself more stressed and restless than usual, but I appreciate you highlighting the importance of that. Maybe for now some extra self love is more important than feeling productive. You mentioned CBD. I actually started smoking (again) recreationally the month before my first seizure, but it was likely high thc, low cbd. Do you use CBD oils, or edibles? What do you recommend? I tried smoking the week after my seizure thinking that it would relax me, but it just made me feel even worse.

 

[valeriedl]

Sorry to hear about your seizure. The first can be the worst because you have no idea what is going on.

It is very common to loose some memory after a seizure. My first seizure was horrible. I had to be put into a coma because my brain wouldn't stop seizing. When I came out I'd lost over 10 years of memory. I didn't even know who the guy was that I'd been dating at the time so I really wasn't too upset when we broke up. My memory still isn't good. I forget things that might happen years ago or even only a few weeks.

As Porkette said keep track of what and when things happen. Since this is a new thing for you even just writing down those weird feelings your getting can help when you talk this over with a dr. The more info you go in with to tell the neuro the better the appointment goes.

I'd talk to a dr about using CBD or things of that sort. He might be able to give you more advice. Some things work for some people and it might not for others, which is why you might be feeling the way you said.

 

[Porkette]

Hi Kaityokaina,

Val mentioned a very good point don't use the cbd until you speak to the neuro. Recreational marijuana has been
proven to cause seizures for some people so you may want to cut back or stop that completely.

The weird feeling you are getting may be simple partial seizures also known as aura seizures. If this happens
again the moment you start to get the weird feelings tighten up all the muscles in your body and make your
hands into tight fists for a few seconds. If you do it quick enough it will stop the possible seizure. My neuro
taught me this back in the 1970's. and it has stopped many seizures.

For many yrs. my Dr. only thought I had scar tissue on the right temporal lobe but when I had brain surgery
to reduce my seizures my neurosurgeon found damage so deep in my brain that not a single test picked it up
and I had all of the tests done that you had along with others.

I wish you the best of luck and May God Bless You,

Sue

 

[Kaityokaina]

Sorry to hear about your seizure. The first can be the worst because you have no idea what is going on.

It is very common to loose some memory after a seizure. My first seizure was horrible. I had to be put into a coma because my brain wouldn't stop seizing. When I came out I'd lost over 10 years of memory. I didn't even know who the guy was that I'd been dating at the time so I really wasn't too upset when we broke up. My memory still isn't good. I forget things that might happen years ago or even only a few weeks.

As Porkette said keep track of what and when things happen. Since this is a new thing for you even just writing down those weird feelings your getting can help when you talk this over with a dr. The more info you go in with to tell the neuro the better the appointment goes.

I'd talk to a dr about using CBD or things of that sort. He might be able to give you more advice. Some things work for some people and it might not for others, which is why you might be feeling the way you said.

Thanks so much! I’ve been trying to do some research and write down things I want to ask him. One of the things that scared me so badly was how long my initial seizure was. It makes me afraid to be alone. I kept help but think “what if my daughter wasn’t there to help? What if it happened again and I couldn’t stop seizing and there’d be no one to help?” So sorry to hear about your experience! That sounds absolutely terrifying. I hope things are going much better for you! Thanks again for the advice and info!

 

[Kaityokaina]

Hi Kaityokaina,

Val mentioned a very good point don't use the cbd until you speak to the neuro. Recreational marijuana has been
proven to cause seizures for some people so you may want to cut back or stop that completely.

The weird feeling you are getting may be simple partial seizures also known as aura seizures. If this happens
again the moment you start to get the weird feelings tighten up all the muscles in your body and make your
hands into tight fists for a few seconds. If you do it quick enough it will stop the possible seizure. My neuro
taught me this back in the 1970's. and it has stopped many seizures.

For many yrs. my Dr. only thought I had scar tissue on the right temporal lobe but when I had brain surgery
to reduce my seizures my neurosurgeon found damage so deep in my brain that not a single test picked it up
and I had all of the tests done that you had along with others.

I wish you the best of luck and May God Bless You,

Sue

Thanks again for the advice. I will definitely try that! I did completely stop the recreational marijuana use. It was obviously not doing me any favors. I definitely would like to try the CBD. I will mention it to the neurologist when I see him. I’m just hoping he’s open to the idea. I don’t even like taking Tylenol for a headache, so the thought of taking aeds makes me really uncomfortable. I would prefer a more natural route if at all possible, but I suppose time will tell.

I’m really appreciating all the support from everyone! It’s so comforting being able to talk to others who’ve been through all this. So nice not to feel alone.

 

[Porkette]

This may sound crazy but try taking 2 Tablespoons of apple cider vinegar with mother in it in the morning right before
you eat your breakfast but be sure to drink some juice or another fluid right after you take the vinegar. I did this to lose
weight and my seizures have decreased to the lowest in my life. My Dr. told me that in the mother is a good protein
along with probiotics and this is what has helped reduce my seizures. You can give it a try if you want and also take
vitamin B12 once a day 1000 mcg. that calms the nerves down.

Wishing You Only the Best and May God Bless You,

Sue

 

[elizzza811]

Start paying attention to these websites, as crazy as I know it sounds. I have a post on here from a lonnng time ago if you search 'seizures and solar geomagnetic activity'. I've learned a lot more since. There are symptoms you might feel days prior to an event. Been following it for about 15 years.

Also, make sure they look for tonsillar ectopia & chiari malformations. Most everyday neurologists aren't familiar with it and will blow off herniations of less than 5mm. I have tonsillar ectopia approaching 5mm (2014), and I'm going to see a neurosurgeon because I seem to 'need' clonazepam, and my neurologist won't order any additional imaging. Clonazepam is what they'll likely stab you with if a seizure won't stop. Important!!!...Make sure you complain of 'pressure at the base of your skull', otherwise the radiologist won't even make note of any herniations under 5mm, like it's some magic number. (YouTube an excellent source of info on chiari.) The radiologist noted it on that 2014 MRI only because I complained of base of skull pressure at that time. It didn't just disappear, so radiologists never even made note it it on subsequent MRIs.

Chiari is basically brain sag. The cerebral tonsils (not the tonsils in your throat) sag below the skull, interfering with the flow of spinal fluid that bathes the brain. This increases intracranial pressure (too much csf in the brain) and can lead to seizures.

Space Weather:

SpaceWeather.com -- News and information about meteor showers, solar flares, auroras, and near-Earth asteroids

Space Weather on 8/3/2021:

Spaceweather.com Time Machine

Space Weather on 8/22/2021:

Spaceweather.com Time Machine

ALWAYS ALWAYS ALWAYS check a few days before and after because they can get lazy on weekends and holidays especially.

That's why I also Google and check out the SWPC FORECAST DISCUSSION daily. Updates every 12 hours. Everything is in UTC time, keep in mind, so you'll need to convert to your time zone.

Also, Google the SATELLITE ENVIRONMENT Plot daily. I'd post the link, but that would just be today's data.

Solar activity is ramping up. The new cycle has begun. More sunspots, coronal mass ejections, filaments which are unstable and erupt, solar wind streams, SSBCs (solar sector boundary crossings). Positive and negative solar wind streams DO make a difference. Going to post again since the links I provided years ago are no longer valid.

 

[Plasticmask]

Firstly, welcome to the Group. You'll find that everyone here is Aces. Truly.
Hoping that your first neuro visit went well, if you're reading this 'post-visit'!
I remember not remembering my first seizure, if that's decent enough English. I came to and was in a complete state of combativeness and confusion for what I thought was days but they told me was only about an hour, if you can believe that.
I was at work at the time, employees (I was the Asst Manager/IT geek of a small Hospital running a Network of 12 workstations) clients, God and everyone all right there watching as I apparently was walking at what used to be my usual brisk pace and it hit, but I kept going, and got a concussion out of it when the damned wall didn't slide out of the way.
They told me that I KEPT walking even as I was on my back on the floor, LOL. Anyway the only thing that I actually remember is all of the physical therapy afterward (yeah, hell of a concussion) and learning to DEEPLY hate both my nurse, and hospitals in general. Was actually kind of relieved when they forced me into retirement. At my age, I didn't stand a chance out there in the open market and being at home all of the time means that I CAN be monitored, I have a Dog as well as a Wife who checks in at regular times.
Anyway. Long note short, you are totally NOT alone here. On Earth, there are more of us than EVEN THE DOCTORS KNOW. They keep changing the definition of 'seizure' it's laughable. Early on for me, for example, there were exactly 120 different kinds of seizures. NOW, depending on to whom you are speaking, there are WELL over 500, and some say as many as 650 different things that define "seizure activity" in our brains. So, we will NEVER know the exact number of our kind.
But my point is hopefully made: You ain't alone, friend. Come and join the Club.
Plus, clearly by accident, you chose a GOOD FORUM. On forums, most people are horse's behinds.

 

[Nakamova]

Hi Kaityokaina, welcome to CWE! A club no-one wants to belong to, but an elite group nonetheless.

First of all, big hugs to you. I had my first seizures out of the blue when I was 35. I still remember how “bruised and confused” I was. At the moment when you want to be at your sharpest so you can figure out what's happened, you're at your fuzziest because of the seizures and the exhaustion and the fear.

Secondly: It's normal to not remember stuff after a seizure, especially a doozie. Your brain and your body both need time to heal, so be gentle with yourself and try to take it easy as much as possible. It does get easier and less scary, I promise.

Third: From what you describe the second event may have been a seizure too -- something called a partial seizure, where the person is conscious the whole time. But the neuro will help with diagnosing what happened. I recommend that you write down all your questions for the neuro and then write down the answers too (or have a family member or friend at the appointment with you to do that). Don't be shy about asking more questions if anything is unclear or confusing.

As others have mentioned, keeping a journal can help too. If you can remember anything about the past month/weeks/days that felt "off", or any unusual stressors, that information may be useful to the neuro. The recreational marijuana use is worth mentioning since that's something that can potentially be a factor, as are things like fatigue, dehydration, emotional stress, nutritional issues, etc. If you or any family members have any history of migraine or seizure, that's also good to note.

Fourth: If your neuro suggests medication, keep an open mind. I'm anti-medication too, but the seizure med I take controls my seizures and has had minimal side effects.

Lastly: A surprisingly large number of people experience one-off seizures. I've got my fingers crossed that that’s the case for you.

Best,
Nakamova

 

[Kaityokaina]

Start paying attention to these websites, as crazy as I know it sounds. I have a post on here from a lonnng time ago if you search 'seizures and solar geomagnetic activity'. I've learned a lot more since. There are symptoms you might feel days prior to an event. Been following it for about 15 years.

Also, make sure they look for tonsillar ectopia & chiari malformations. Most everyday neurologists aren't familiar with it and will blow off herniations of less than 5mm. I have tonsillar ectopia approaching 5mm (2014), and I'm going to see a neurosurgeon because I seem to 'need' clonazepam, and my neurologist won't order any additional imaging. Clonazepam is what they'll likely stab you with if a seizure won't stop. Important!!!...Make sure you complain of 'pressure at the base of your skull', otherwise the radiologist won't even make note of any herniations under 5mm, like it's some magic number. (YouTube an excellent source of info on chiari.) The radiologist noted it on that 2014 MRI only because I complained of base of skull pressure at that time. It didn't just disappear, so radiologists never even made note it it on subsequent MRIs.

Chiari is basically brain sag. The cerebral tonsils (not the tonsils in your throat) sag below the skull, interfering with the flow of spinal fluid that bathes the brain. This increases intracranial pressure (too much csf in the brain) and can lead to seizures.

Space Weather:

SpaceWeather.com -- News and information about meteor showers, solar flares, auroras, and near-Earth asteroids

Space Weather on 8/3/2021:

Spaceweather.com Time Machine

Space Weather on 8/22/2021:

Spaceweather.com Time Machine

ALWAYS ALWAYS ALWAYS check a few days before and after because they can get lazy on weekends and holidays especially.

That's why I also Google and check out the SWPC FORECAST DISCUSSION daily. Updates every 12 hours. Everything is in UTC time, keep in mind, so you'll need to convert to your time zone.

Also, Google the SATELLITE ENVIRONMENT Plot daily. I'd post the link, but that would just be today's data.

Solar activity is ramping up. The new cycle has begun. More sunspots, coronal mass ejections, filaments which are unstable and erupt, solar wind streams, SSBCs (solar sector boundary crossings). Positive and negative solar wind streams DO make a difference. Going to post again since the links I provided years ago are no longer valid.

I also wonder how much effort is put into reading my images. My neurologist actually had no intentions of meeting with me or scheduling a follow up appointment. He just put my results on “mychart” online and that would’ve been that. I had to be persistent and insist that he actually see me in person so I could talk to him.

As for the solar activity, that’s super interesting! Especially because my sister is a radiologist a few hours away and she had said that over the last few weeks they’ve done a lot more MRI imaging for seizures than usual. Also, it turns out a girl I used to work with also had her first seizure within days of me having mine. I’m actually a huge space nerd too, so I’m familiar with how solar flares and CMEs can interrupt electrical signals and magnetic fields on Earth. So that’s definitely quite thought provoking being that seizures are basically a disruption of our brains electrical activity.

 

[Kaityokaina]

Firstly, welcome to the Group. You'll find that everyone here is Aces. Truly.
Hoping that your first neuro visit went well, if you're reading this 'post-visit'!
I remember not remembering my first seizure, if that's decent enough English. I came to and was in a complete state of combativeness and confusion for what I thought was days but they told me was only about an hour, if you can believe that.
I was at work at the time, employees (I was the Asst Manager/IT geek of a small Hospital running a Network of 12 workstations) clients, God and everyone all right there watching as I apparently was walking at what used to be my usual brisk pace and it hit, but I kept going, and got a concussion out of it when the damned wall didn't slide out of the way.
They told me that I KEPT walking even as I was on my back on the floor, LOL. Anyway the only thing that I actually remember is all of the physical therapy afterward (yeah, hell of a concussion) and learning to DEEPLY hate both my nurse, and hospitals in general. Was actually kind of relieved when they forced me into retirement. At my age, I didn't stand a chance out there in the open market and being at home all of the time means that I CAN be monitored, I have a Dog as well as a Wife who checks in at regular times.
Anyway. Long note short, you are totally NOT alone here. On Earth, there are more of us than EVEN THE DOCTORS KNOW. They keep changing the definition of 'seizure' it's laughable. Early on for me, for example, there were exactly 120 different kinds of seizures. NOW, depending on to whom you are speaking, there are WELL over 500, and some say as many as 650 different things that define "seizure activity" in our brains. So, we will NEVER know the exact number of our kind.
But my point is hopefully made: You ain't alone, friend. Come and join the Club.
Plus, clearly by accident, you chose a GOOD FORUM. On forums, most people are horse's behinds.

Lol. That is so funny, yet not funny at the same time. Thanks for sharing your story. I’m glad I’m not alone and I’m so thankful all of you have taken the time to help me find answers and bring me comfort. I don’t know anyone who’s had a seizure before so it’s nice to know what I’m feeling is “normal”.

 

[Kaityokaina]

Hi Kaityokaina, welcome to CWE! A club no-one wants to belong to, but an elite group nonetheless.

First of all, big hugs to you. I had my first seizures out of the blue when I was 35. I still remember how “bruised and confused” I was. At the moment when you want to be at your sharpest so you can figure out what's happened, you're at your fuzziest because of the seizures and the exhaustion and the fear.

Secondly: It's normal to not remember stuff after a seizure, especially a doozie. Your brain and your body both need time to heal, so be gentle with yourself and try to take it easy as much as possible. It does get easier and less scary, I promise.

Third: From what you describe the second event may have been a seizure too -- something called a partial seizure, where the person is conscious the whole time. But the neuro will help with diagnosing what happened. I recommend that you write down all your questions for the neuro and then write down the answers too (or have a family member or friend at the appointment with you to do that). Don't be shy about asking more questions if anything is unclear or confusing.

As others have mentioned, keeping a journal can help too. If you can remember anything about the past month/weeks/days that felt "off", or any unusual stressors, that information may be useful to the neuro. The recreational marijuana use is worth mentioning since that's something that can potentially be a factor, as are things like fatigue, dehydration, emotional stress, nutritional issues, etc. If you or any family members have any history of migraine or seizure, that's also good to note.

Fourth: If your neuro suggests medication, keep an open mind. I'm anti-medication too, but the seizure med I take controls my seizures and has had minimal side effects.

Lastly: A surprisingly large number of people experience one-off seizures. I've got my fingers crossed that that’s the case for you.

Best,
Nakamova

Thank you. I’m also thinking the second episode was likely another seizure. I wrote everything down that I remembered about it immediately after so I could ask the neurologist his thoughts. I’m thinking I might just start a daily journal just to keep track of anything that could be helpful. Especially because my memory has been so fuzzy lately. The Dr. should know about me smoking weed. They did a drug test in the ER and I tested positive for pot. I’ve quit smoking since, but I’ll mention it anyways in case it could be relevant.

Thanks again everyone for all the information. I feel much more prepared to see my neurologist! It’s also just comforting to have a game plan moving forward. I’ve felt quite lost the last few weeks.

 

[elizzza811]

I also wonder how much effort is put into reading my images. My neurologist actually had no intentions of meeting with me or scheduling a follow up appointment. He just put my results on “mychart” online and that would’ve been that. I had to be persistent and insist that he actually see me in person so I could talk to him.

As for the solar activity, that’s super interesting! Especially because my sister is a radiologist a few hours away and she had said that over the last few weeks they’ve done a lot more MRI imaging for seizures than usual. Also, it turns out a girl I used to work with also had her first seizure within days of me having mine. I’m actually a huge space nerd too, so I’m familiar with how solar flares and CMEs can interrupt electrical signals and magnetic fields on Earth. So that’s definitely quite thought provoking being that seizures are basically a disruption of our brains electrical activity.

I just wish I could get a neurologist to consider this. When I first posted links to space weather dot com, the SWPC Forecast Discussion, and the Satellite Environment Plot, people were actually PM-ing me and asking me to tell them everything I know. For instance, someone had messaged me that they hadn't had a seizure in 5 years, and then this huge sunspot appeared, and bam.

 

[elizzza811]

I'm the space weather nut on here. Whenever someone mentions a new onset seizure like this or a return of seizures previously controlled, I like to take a peek at this. August 3rd.

Spaceweather.com Time Machine

You can go back and check what was happening on that other day too. It's not as crazy as it sounds. Heart attacks and strokes have been linked to this.

 

[Sabbo]

Hello & welcome to the group. I've had simple complex seizures since I was a little kid, but they weren't diagnosed until 1987. That year, I suddenly had 3 or 4 tonic clonic seizures During an EEG I had one of the "feelings" I often complained of and doctor realized those were actually seizures.
The type of seizures a person has can also change during their life. About 23 years ago, I began having complex partial seizures in addition to the simple partials. For me, those are VERY dangerous. I've burned myself severely--second & third degree 7 or 8 times, & fallen while in or right after taking a shower.