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Hello, I'm a 30-year-old male, I had my first Seizure on the 25th of February, in my sleep I didn't know until I woke up surrounded by paramedics, I spent 4 days in the hospital, Mainly due to the fact the seizure caused me to develop rhabdomyolysis I could attribute this to the fact I maybe have been severely dehydrated, to begin with, The doctors wouldn't release me until my levels were down. They pumped me with fluids around the clock, they ran an MRI including one with contrast, which showed clear, they also ran an EEG. which showed clear as well.

The onsite neurologist gave me 2 options to take Keppra or wait until I follow up with a neurologist to put me on something else. I did my research and according to (epilepsy.com) A seizure medicine is usually started if a person has had more than one seizure.

Seizure medication is usually not started if:

The neurological examination is normal.(check)

The results of neuroimaging studies (CT or MR scan) are normal.(check)

The EEG is normal.(check)

A specific trigger is found that can be eliminated.

The seizure occurred during sleep.(check)

There is no family history of epilepsy.(questionable)

The only thing that includes me is that my identical twin brother started having seizures in 2015 he went through a lot of traumas before he started his seizures, a lot of PTSD Episodes before that doctors think he may have PNES (Psychogenic non-epileptic seizure) But he's still on Keppra when he first started Keppra he had every sign effect extreme rage. The works it ruined our family the sign effects have since calmed down but they still arise, I simply don't want to go through that with Keppra or any other seizure med if this is just a fluke. I'm scared every night and day because I have 2 kids I have to look after, and currently can't drive anymore. according to the ER doctor. I need advice, not medical advice just some incite on what you would do.
 

Nakamova

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Hey bestman, welcome to CWE!

Here's the scoop: Epilepsy is a catch-all term for a wide variety of seizure disorders. The path it takes is different for each person. Anyone in the CWE community can give you advice, but you should keep in mind that the advice is not one-size-fits-all, and may or may not be appropriate for your situation.

Okay, now that that's out of the way:

It is absolutely your choice whether to go on anti-seizure medication. Ideally you would make that decision already knowing whether or not you have a seizure disorder. Unfortunately what you say above doesn't actually rule epilepsy in or out. A normal exam and CT/MRI don't rule epilepsy out. A normal EEG doesn't rule it out (a lot of people who definitely have epilepsy have never had a positive EEG). Suspecting a trigger does not rule out epilepsy (a lot of people get severely dehydrated; not all of them have seizures). Sleep seizures can be epileptic in nature. And as for family history -- not all epilepsy has a genetic component. And for the majority of folks with epilepsy there is no definitive cause.

Not saying all that to be a bummer, or to convince you to go on meds/stay on meds. (I didn't want go on them, even after I had a positive EEG.) But it's a good idea to get a lot of info before making a decision like this. It's reasonable to be worried about side effects, and "Kepprage" is a common one...with Keppra. There are lots of seizure meds to choose from however. Your neuro could suggest ones that might be a better fit if you are worried about emotional side effects. You could certainly try a seizure med for six months and then taper off (carefully, under doctor's supervision).

If you decide to hold off on meds for now, I suggest that you focus on your overall health. You mention that you were very dehydrated before the seizure. Do you know why? Take a look back at how you felt in the hours/days/weeks before the seizure -- were there any hints (however tiny) that something might be amiss? Are there things you can do with your sleep, diet, activities, etc. that will help keep your system on an even keel? Being proactive about your health is a good idea even if you don't have epilepsy, and it can't hurt.

To end on a positive: Even if your seizure is an epileptic one, that doesn't mean you have epilepsy. One in 20 people will have a one-off seizure at some point in their life. Here's hoping that your seizure is one of those. :)

Best,
Nakamova
 
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Hello, Nakamova

hope your day is going well, I just really hope I'm not making a mistake by holding off on the meds. I understand that all side effects don't affect everyone but at the same time, I really think I should do the wait and see approach. The weeks leading up to the seizures I was having these very weird feeling I couldn't explain at all. I know what auras are all too well. but I just tossed them up to being anxious because I have had random bouts of anxiety in the past. it was just an overwhelming feeling of joy to the highest extent then ill plateau back to normal. I kept having these feelings until I had the seizure. When I'm at work I get so busy and sometimes forget to stay hydrated that day I forgot and just went to sleep, I was also angry with my wife at the time of going to sleep.
 

Nakamova

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The weird sensations you describe sound like they might be what are called partial seizures. They can be a precursor to a full tonic-clonic seizure like the one you had. In that scenario I think it might be safer to go on the meds for a while. But if you do, definitely ask your doc about trying something other than Keppra. The med I'm on (Lamotrigine) has been good for me, but everyone has different experiences.

If you haven't already, you should mention the weird feelings to the neurologist, and also the bouts of anxiety. Some partial seizures can mimic anxiety or panic attacks. They can feel like nausea or dread.
 

Porkette

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Hi Bestman,

Welcome to CWE! Nakamova gave you some good info. I've had epilepsy for 48 yrs. and at one time I would wake up in the morning
feeling exhausted even though I went to bed around 10 pm this continued for awhile so I called my Dr. and he had me see my Epileptologist (Dr.
who treats epilepsy) and they did a sleep study on me along with an e.e.g. and e.k.g. and they found I was having seizures in my sleep
1-2 hrs. before I would wake up in the morning. My advice to you is to find a neuro whose a sleep specialist also and get this test done
this could be what is going on with you. The seizures are known as myoclonic seizures they happen when a person goes to bed
or when they first wake up.
As Nakamova mentioned some tests won't show what's triggering seizures. I had brain surgery a few yrs. ago and went through
all the testing only to find out that during the surgery they found more brain damage on me so deep in the brain that not a single
test would show it.
Get a calendar and write down any time you have these feeling and if you have any seizures be sure to write down what time
the seizure happened and if you are sick by doing this the Dr. may find a pattern in the seizures and what time of day/night they
happen and what days of the month. I always have seizures between the 25th and the 28th all do to hormones changing.
One drug that stopped the type of seizure you had was vimpat the drug stopped the myoclonic seizures but I still deal with
absence (petit mal), complex partial, and simple partial (aura) seizures. My Dr. told me to start using CBD (med. marijuana)
and I'm amazed at how that has reduced my seizures to the lowest in my life. I wish you only the best of luck and May God Bless You!

Sue
 

valeriedl

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Hello, it's nice to meet you!

As Porkette said get a calendar and write down when these things happen. I keep what you could call a diary too. In it I write down things I did that day - Went somewhere, shopping, movies out to dinner (even if it was just fast food), parties, if people came over and things like that. Not getting enough sleep is a trigger for me and I usually take a nap in the afternoon. If I see in my diary that I'd gone with out naps, one day or several days, it could be something that might have cause the seizure. Stress is a trigger too so I might see stressful things that happened.

I don't know where you work but if you can try to keep something to drink where you're going to see it. If it's something that you don't mind drinking steamy hot or ice cold then keep a second too. That way you won't have to get up to get it because if you're like me I'll say to myself 'I'll get it in a minute' but I always for get too. Post it notes are great reminder too. I've got them all over the house so I'll remember to do it.
 

HumbleDeer

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I use Olly Tree's Epilepsy Diary. It has a big button widget for your front page. I tap it when I get auras. I can cancel it if I don't have a seizure, or save it as "aura only". Though, don't be mislead, auras are also seizures.
 

Sabbo

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Hello, & welcome to CWE. Epilepsy can go undiagnosed for a long time--I had it since childhood, but it wasn't diagnosed until after I had 3 or 4 tonic clonic seizures at the age of 14. That's when the "weird feelings" I kept complaining about were finally recognized as simple partial seizures, after one occurred during an EEG.
 
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