Hi, I'm new here...

Dinosaur

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Hello!

I haven't been diagnosed with epilepsy or anything, nor do I really think I have it - but I needed to find a community with people who might understand that I could talk to. I had a seizure about a month ago after not sleeping for over 24 hours. I had gone 24+ hours without sleep before and never had any serious issues, so it shouldn't have happened.. But it did. I had what I think is called a Grand Mal seizure? I was unconscious for a while after and then in a really confused state for a few hours. My memory of what happened is also fuzzy for a few hours before and after the incident. Most of what I remember about the actual seizure is from what people told me, since I had a few witnesses present... I went to the ER and had a CT scan and blood tests but they found nothing.

But anyway, that happened. I went to a neurologist for the first time afterwards and he ordered an MRI and EEG. I have both of those done now, just waiting for my results appointment in a few weeks. I have been fine for a while now, no more seizures - however, a few days ago something weird happened. I sleepwalked, not just sleepwalked, but pulled a poster off the wall and put it in a chair in my sleep, for no reason. I have no clue. I've never done anything like that before. I'm 19 and have no history of anything like this.

Anyone have any input on that or can relate? It's really odd haha.

Well anyway, nice to meet you all! Have a good day :)
 

Porkette

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Hi Dinosaur,

Welcome to CWE! Lack of sleep and stress are the 2 main things that can trigger seizures for a person. When you went for over 24 yrs. without
any sleep that could have been one reason why you had the tonic clonic (grand mal) seizure,

It's normal to be confused and tired after a seizure. It's good that you had the CT scan and MRI done along with the EEG they are 3
very good tests to show if a person is having problems that can trigger seizures.

I'm wondering if you have sleep apnea since you were walking in your sleep. I used to have seizures in my sleep and I didn't even
realize it other than waking up in the morning feeling really tired. These seizures are called myoclonic seizures. You may want to ask
the Dr. to do a sleep study on you along with an e.e.g. and e.k.g. all at the same time. If they do this they will be able to tell if you
are having seizures in your sleep. Once I started taking the drug Vimpat this type of seizure stopped for me but I still have absence
and complex partial seizures also.

Get a calendar and write down the time you had any seizure and the discription or type of seizure you may have had. Also take note
if there was a low pressure in the weather because sometimes that can trigger seizures for some people. Stay away from anything
with nutra sweet (aspartame) in it like diet soda. It's been proven that this can cause more electrical activity in the brain which in turn
can trigger seizures for some people. I also found out that sometimes using a cell phone for to long can trigger seizures for me do
to the frequency the cell phones use.

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

Sue
 

Dinosaur

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Hi Sue,

Yes, I believe going without sleep was the trigger, but what's weird is I have gone without sleep before for that amount of time in the past and never had issues. So I'm not sure why that would suddenly happen. And yes, I am hoping the tests can find what it is if something weird is going on!

I don't think I do, I usually sleep pretty soundly and don't wake up at all in the night. That night in particular, however, I apparently did some random things in my sleep and went back to bed - then was awoken suddenly about an hour later to my dog barking. That was when I realized what I had done in my sleep. That's so interesting about the seizures in your sleep though. I often do wake up pretty tired, but never confused like I was when I had the one seizure. I have worn a fitbit to bed for the past month and it's usually able to track anytime I wake up and how soundly I sleep. The night I apparently sleepwalked, it recorded 9 minutes of activity at a time I thought I had been sleeping. Thank you for the information! I will keep that in mind.

That's interesting about the weather. How do you know what the pressure is? I don't know a lot about the weather other than that it's always very hot here. Wow, I didn't realize that sweeteners could do that. I drink a lot of sparkling water with artificial sweetener in it. Interesting.

Thank you, it's good to "meet" you and God bless you as well!
 

Porkette

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Hi Dinosaur,

I'm happy to have been of some help to you but take my word others here on the forum can give very good info. also.

In regards to the weather if you know it's going to rain or snow that day or even a couple of days ahead of time that means
a low pressure will be headed your way. When this happens the barometric pressure drops and the air becomes heavier and
the heavier air sometime can trigger seizures because it affects a persons hormones and when the hormones in the body are
changing sometimes some people end up having seizures. Also I have what they call "Seasonal Seizures" which are when a person
has more seizures at certain times of the yr. I always have more in the fall and winter compared to the spring and summer because
there's less seritonin in the fall and winter compared to the spring and summer.

In regards to the sweeteners I never realized what they could do until I started drinking diet soda and I had many more seizures.
Then I called my neurologist and he asked me what I had been doing and what had I been eating and drinking and the moment I told
him diet soda he told me that's what triggered the seizures and he was right because I stopped drinking the diet soda and the
seizures decreased. Be sure to cut yourself back on caffeine also.

I've had seizures for 49 yrs. and had 2 surgeries to help reduce my seizures. I also take vitamin B12 1000 mcg. once a day and that
helps calm the nerves you can buy it over the counter if you are interested.

Wishing You only the Best and May God Bless You,
Sue
 

Nakamova

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I haven't been diagnosed with epilepsy or anything, nor do I really think I have it - but I needed to find a community with people who might understand that I could talk to. I had a seizure about a month ago after not sleeping for over 24 hours. I had gone 24+ hours without sleep before and never had any serious issues, so it shouldn't have happened.. But it did. I had what I think is called a Grand Mal seizure? I was unconscious for a while after and then in a really confused state for a few hours. My memory of what happened is also fuzzy for a few hours before and after the incident. Most of what I remember about the actual seizure is from what people told me, since I had a few witnesses present... I went to the ER and had a CT scan and blood tests but they found nothing.
Hi Dinosaur, welcome to CWE!

Since metabolisms change over time, it's possible to have a seizure under circumstances where you wouldn't have in the past. I had new onset seizures when I was 35 -- out of the blue, with no underlying cause. Like you I was fatigued, but no more so than at any other time in my past.
In my case, my seizures were diagnosed as epilepsy based on the EEG.

Many people do have one-off seizures, and that may be the case for you. The second event you describe could also be a kind of seizure though -- one called a complex partial -- so it’s very important that you tell the neuro what happened. Do you have anyone observing you when you sleep? It's possible that you may have been having more night episodes than you are aware of. The MRI and EEG can help with diagnosing what happened. Based on the test results and any clinical symptoms the neurologist will discuss next steps, and whether it makes sense to consider some kind of short-term or long-term treatment. (There may be restrictions on driving as well). At minimum you should pay close attention to your health, and try to avoid what are called secondary triggers -- Sue mentions some of them above. Fatigue is definitely the #1 seizure trigger, but things like dehydration, diet, and emotional or physical stress can also play a role.

Best,
Nakamova
 

Dinosaur

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Hi Dinosaur,

I'm happy to have been of some help to you but take my word others here on the forum can give very good info. also.

In regards to the weather if you know it's going to rain or snow that day or even a couple of days ahead of time that means
a low pressure will be headed your way. When this happens the barometric pressure drops and the air becomes heavier and
the heavier air sometime can trigger seizures because it affects a persons hormones and when the hormones in the body are
changing sometimes some people end up having seizures. Also I have what they call "Seasonal Seizures" which are when a person
has more seizures at certain times of the yr. I always have more in the fall and winter compared to the spring and summer because
there's less seritonin in the fall and winter compared to the spring and summer.

In regards to the sweeteners I never realized what they could do until I started drinking diet soda and I had many more seizures.
Then I called my neurologist and he asked me what I had been doing and what had I been eating and drinking and the moment I told
him diet soda he told me that's what triggered the seizures and he was right because I stopped drinking the diet soda and the
seizures decreased. Be sure to cut yourself back on caffeine also.

I've had seizures for 49 yrs. and had 2 surgeries to help reduce my seizures. I also take vitamin B12 1000 mcg. once a day and that
helps calm the nerves you can buy it over the counter if you are interested.

Wishing You only the Best and May God Bless You,
Sue
Thank you very much for letting me know! Very interesting information to have.

Hi Dinosaur, welcome to CWE!

Since metabolisms change over time, it's possible to have a seizure under circumstances where you wouldn't have in the past. I had new onset seizures when I was 35 -- out of the blue, with no underlying cause. Like you I was fatigued, but no more so than at any other time in my past.
In my case, my seizures were diagnosed as epilepsy based on the EEG.

Many people do have one-off seizures, and that may be the case for you. The second event you describe could also be a kind of seizure though -- one called a complex partial -- so it’s very important that you tell the neuro what happened. Do you have anyone observing you when you sleep? It's possible that you may have been having more night episodes than you are aware of. The MRI and EEG can help with diagnosing what happened. Based on the test results and any clinical symptoms the neurologist will discuss next steps, and whether it makes sense to consider some kind of short-term or long-term treatment. (There may be restrictions on driving as well). At minimum you should pay close attention to your health, and try to avoid what are called secondary triggers -- Sue mentions some of them above. Fatigue is definitely the #1 seizure trigger, but things like dehydration, diet, and emotional or physical stress can also play a role.

Best,
Nakamova
Ah okay, I see! Wow, I'm sorry to hear that you were diagnosed so suddenly at that age, but I hope you've been able to get it under control. I'm interested to know what my results are - but since I've only had one grand mal seizure that I'm aware of, I have a feeling it's just going to be normal. Which is good, I'll be glad if it is - but I still find it super strange I did have that sleepwalking incident the other day. I will definitely let the neurologist know, even if I sound a little crazy telling him I suddenly sleepwalked, haha! Very interesting.

I do live with my parents who are in the room across from mine, but they're usually sound asleep - so unless I made a sudden loud noise, they probably wouldn't know. They didn't wake up when I was sleepwalking - I just figured out I had been sleepwalking from all the evidence I gathered and pieced together (Like a poster missing off the wall with absolutely no logical explanation, my fitbit recording steps at a time I should have been sleeping, and a really faint memory I have of staring at the poster in the chair for no reason).

I do already have my driver's license suspended for the next 6 months, and from what I understand I'm not getting it back until that time is up, nothing can change that. I guess in the state I live in you get your license suspended anytime you have a seizure, whether you are diagnosed with something or not. You have to have gone a certain amount of time with zero seizures. Thankfully I've been allowed to do work and school online for the time being.

This is all very helpful information to have, thank you so much! It's reassuring to be able to hear someone who has experience explain what exactly will go on and what will be evaluated at the neurologist appointment. I have definitely been trying to get better sleep lately, the seizure was certainly a warning to change my lifestyle in that way.

Thank you again, and hope you are doing well! :)
 

Plasticmask

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I can't add anything to any of this, other than to welcome you to the Group :)
 
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