New, confused, anxious. I have a lot of questions!

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joeyrory

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Hi everyone!

I'm a 21 year old university student who has had three 'episodes' in the last two weeks (though we suspect they've happened in my sleep before). These episodes involve me getting extremely strong Deja Vu, butterflies and a weird feeling in my stomach and I feel really afraid. Then I have a blackout/memory blip and people who have been with me report I spend about 90-120 seconds staring across the room and repeatedly chewing/smacking my lips and swallowing. I don't fall over or anything but I'm unresponsive (though apparently can be guided to sit down etc). When I 'come back' I can't remember what's just happened and tend to be confused and upset for a few minutes and have tingling in my left hand fingers. I'm then EXTREMELY sleepy and usually fall asleep for a few hours pretty quick and spend a great deal longer with a headache/tired.

I'm waiting to be seen by a neurologist but meanwhile my doctor and dad (also a dr) have suggested these seem like seizures and I might have a type of epilepsy.

I'm quite shaken as this has really taken me by surprise. I'm struggling with continuing my studies and am feeling a bit down as I already have asperger's syndrome and anxiety with some depression. I'd love some support advice from people! Sorry for all the questions!

*Do these episodes sound like seizures? If so, could anything other than epilepsy cause them?
*Is it likely I'll be stopped from driving as a result?
*What are kind of common triggers? I seem fine with flashing lights but have been tired and stressed recently.
*If anyone has the same type of seizures, how often do you have them? Is three in 2 weeks a lot?
*Is medication likely to help much?

Sorry again for all these questions, my head is just buzzing.
 
These do sound like seizures.

The Deja Vu, butterflies and a weird feeling in my stomach and I feel really afraid is could be a simple partial.

When you blackout/memory blip and people who have been with me report I spend about 90-120 seconds staring across the room and repeatedly chewing/smacking my lips and swallowing could be a complex partial. I do many of these things during mine.

When I come out of a complex partial I don't remember anything that happened during it. I may also not remember anything that had happened a few hours to a few days before it too.

After my seizures I'll have a pretty strong headache and I'm very tired. I'll usually sleep the rest of the day. I'm usually pretty tired the day after too.

*Is it likely I'll be stopped from driving as a result?
Usually when you do have seizures you do have to stop driving. Not only for your safety but for other peoples too. If you were to have a seizure behind the wheel and black out who knows where your car could end up and what you might hit. Depending on the state you have to go seizure free for so many months before you are able to drive again.

*What are kind of common triggers? I seem fine with flashing lights but have been tired and stressed recently.
Many of the triggers that I have and many other people do too are - stress, lack of sleep and caffeine. There can be others.

*If anyone has the same type of seizures, how often do you have them? Is three in 2 weeks a lot?
Everyone is different when it comes to having seizures. I have on average 7 a month. Some people could have several a day, one a day, one or a few a week, one or a few a month. People can go months or years without having them too.

*Is medication likely to help much?
Usually medicine can help with the seizures. It isn't guaranteed to stop them but you may have less than you would if you didn't take it. Everyone is different with what meds and dosages will help them.

Ask all the questions you want and you will get some pretty good answers on here - I know I have.

Nice to meet you.
 
joeyrory

Welcome to C.W.E. and our little family who will try to help you.

They are correct though it does sound like seizures and it is no wonder you are shaken, this is a shock to the system. You will get support and help here from people who care

Could anything other than epilepsy cause this, Yes, but I am not a doctor and I will not try to tell you or diagnose you.

Yes you probably will be stopped from driving, first for the safety of others and second for your own safety. I know you do not want to hurt anybody even yourself, but you can get you license back.

Being tired and stressed are two of the most common triggers but everybody is different and can have different triggers, you will figure out your triggers in time and there will be more than one or two.

Nobody can say how many a week/month or year is normal or correct because we are all different and so it has different effects. Yes the medication can help and hopefully you will get full control of your seizures.
 
Hi joeyrory, welcome to CWE!

To the excellent answers above, I just wanted to add that what you describe does sound like simple partial seizures and complex partial seizures. During simple partials the person is fully conscious but experiences odd or distorted sensations (like deja vu, or the "butterflies" feeling). During complex partials it's as if the person is sleepwalking -- their awareness is impaired, and they may have "automatic" behaviors like chewing or hand movements. You can read more those kinds of seizures here:
http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures
http://www.epilepsy.com/learn/types-seizures/complex-partial-seizures

Regarding triggers: Everyone has different triggers for their seizures, and they can be cumulative or act in combination, and they can change over time. Usually they take the form of some kind of physical, physiological, emotional, or environmental stressor. Fatigue is the #1 trigger, but it could be something like food sensitivity or infection or dehydration or fluorescent lights. And sometimes you might not be able to figure it out. Below are some threads you might want to check out:
http://www.coping-with-epilepsy.com/forums/f22/epilepsy-triggers-516/
http://www.coping-with-epilepsy.com/forums/f20/tle-emotional-triggers-24683/
http://www.coping-with-epilepsy.com/forums/f23/getting-know-your-triggers-6000/
http://www.coping-with-epilepsy.com/forums/f23/seizure-triggers-17295/

If you can, you might want to keep a seizure diary so you can track your symptoms as well as other factors that might be potential triggers. If you are prescribed a medication for your seizures, the diary can also help you track how your symptoms respond, and whether you are having any side effects.

Epilepsy is a confusing and mysterious disorder, and it's very normal to be shaken up by a possible diagnosis. You're doing the right thing by getting information. CWE is a great source for anecdotal advice and support, so I hope you feel free to ask for both as needed.

Best,
Nakamova
 
Don't touch machinery including cars, power tools etc.
This may be a little extreme. :) You can touch things, but until you get a better sense of what's going on and/or get treatment to control your symptoms, it's a good idea to avoid situations where you might put yourself or others at risk.
 
Like the others have already stated. It sounds like you are having Partial or CPS.

Everyone experiences their seizures differently. Some may last long or short amounts of time. Flashing lights is just one of many possible triggers.

Possible triggers: flashing lights, heat, cold, stress, tiredness, bad cold, medication, caffeine, alcohol, loud noise, smells, the list goes on..

Everyone is different, so triggers are different in everyone.

If you lose consciousness in anyway during a seizure, you will not be aloud to drive.
There are situations where accommodations can be made. But those are very specific.
IE: If you only had night seizures. You may be aloud to drive during the day. But not at night.


You entered into a new world of seizures. We welcome you, and will try to help guide you along this new path. :)
 
Thanks to everyone who replied! I'm really glad I found this helpful community.

I've had a look at the links you offered Nakamova and think I am having simple and complex partial seizures. I'm trying to complete a seizure diary with the help of witnesses as I can't remember them much!

Quick update: I could initially only get a neurologist appointment for mid June but by a stroke of luck found out today the epilepsy clinic had got a cancellation so I can be seen in about 2 weeks time!

Thanks again, I still have a lot of questions I'll post in a more appropriate part of the forum.
 
I know a seizure diary can be hard to keep sometime when you have complex partials unless there is someone there to see you having the seizure.

At times I like to do things, like walk around or play with things and put them where they don't go, during a complex partial seizure and that's how I know I'd had one when there was no one there to see it. I get up in the morning around 7 to take my meds and feed the cats then get back in bed. I must have had the seizure during that time because when I woke up/came out of the seizure I was laying on the couch with my robe on instead of in bed. Another time I'd loaded the dishwasher in a very interesting way during a seizure.

Another way that I know that I'd probably had a seizure when there was no one there to see it happen is if I have a very bad headache.
 
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