Getting tested for epilepsy

[Liv]

Hello everyone. I'm not sure if I'm looking for support, advice, or just a way to get out what's been constantly on my mind the last few weeks. I don't know if I have epilepsy, but I am getting a sleep deprived EEG and an MRI done in two weeks.

I'm about a week shy of 21 years old, and the morning of August 30th my husband was woken by me having my first tonic-clonic seizure. He tells me that I was gagging and making a gurgling noise, my eyes were open and rolled back into my head, and my body was moving in rhythmic back and forth motions. He turned me onto my side out of fear that I would choke or bang my head on the bookcase next to the bed. He says it lasted several minutes and I was completely unresponsive for another several minutes after that.

The first thing I remember is him saying "Olivia. We're going to the ER. You've had a seizure." Apparently, he'd said it about ten times before I heard him. I thought he'd had a nightmare and told him to let me get back to sleep. But the more I tried to prove to him I was fine, I realized I felt very not fine. We went to the ER, and that's when I discovered I'd bitten my cheek, lip, and tongue. I was also extremely nauseated. They did a whole blood work-up and a cat scan but everything looked normal. So our doctor referred us to a neurologist.

After talking with the neurologist for a while, he believes my anxiety attacks may have really been simple partial seizures since they are always the same and happen at random times even when I am not upset about anything at all. When they happen I get what I call deja vu. I feel like everything is a dream, and it's a dream I've had before. Though the dr says the way I describe it is more like jamais vu. I get incredibly anxious, but I'm not sure about what. I feel like I'm not getting enough oxygen, and my chest tightens up like there is a scream trying to rise up but I don't want to scream.

A huge part of me feels like I couldn't possibly really have epilepsy because things just simply don't happen to me. Which is silly, obviously. At the same time I'm wondering what if I do, how will that change my life? I think it's just waiting for the tests and wondering that's bugging me most right now.

 

[salright2baredneck]

First of all, welcome to CWE. You have found a place that has a wealth of helpful information and many people that are very willing to listen to you and help you through this.

A huge part of me feels like I couldn't possibly really have epilepsy because things just simply don't happen to me. Which is silly, obviously. At the same time I'm wondering what if I do, how will that change my life? I think it's just waiting for the tests and wondering that's bugging me most right now.

Please be assured, denial is a very real part of seizure disorders. I started having simple partials immediately after a brain injury in 2005, and ignored them until I was forced to face the issue in 2008 when I had a Tonic Clonic seizure. After that came the fear of the unknown, and then another phase of denial, where I took my meds as prescribed and tried to pretend that there was nothing wrong with me. I finally realized that until I took control over my own health, I was going to be fighting a downhill battle.

What you described to me does sound like a seizure, but I am no neurologist. Something that is important for you to know, is that even though it might take a while to get things right, epilepsy is a controlable thing. There is no reason that it alone should keep you from living a full and happy life once you find that balance, and there are plenty of people here willing to stand beside you and help you find it.

 

[Nakamova]

Hi Liv, welcome to CWE --

If you do get diagnosed with epilepsy, don't despair. It feels and sounds scary, but in many ways epilepsy is no different than asthma or diabetes -- it can be "coped with" and it doesn't have to define you. Everyone's experience of epilepsy is different, and "epilepsy" is just a catch-all term for a wide variety of seizure disorders, so it may feel very confusing at first. I hope you feel free to ask question and post here at CWE -- the members offer terrific support, empathy, feedback and advice.

Best,
Nakamova

 

[Liv]

Thank you both for the responses. I know that if it does turn out that I have a seizure disorder I will be able to deal with it. Right now I think the unknown and waiting to take the tests is what is bothering me most. I really don't like being in limbo.

I do have a question about the sleep deprived EEG. My instructions are to go to bed at midnight and wake at 4am. The EEG is scheduled for 10:30 and my MRI is at noon. Would it do anything to get even less sleep than they told me I was allowed, or would it make no difference? Part of me feels like I won't be able to sleep anyway from anticipation, but then again I'll probably feel different once the time actually comes.

 

[Nakamova]

They want you to be weary during the EEG, so if that's just as likely to happen if you stay up all night, then feel free. In fact, for my sleep-deprived EEGs I was told not to sleep at all the night before.

 

[Liv]

Thank you for answering my question.


This is probably unrelated, but I just wanted to see anyway. Is there any connection with seizures and lightheadedness/almost fainting? I'm guessing mine are not because I can usually pinpoint it to something (I stood up recently, I'm stretching up). But it happens very frequently, at least every other day/every couple days I would say. Sometimes it's so bad my vision goes completely black and I have to let myself slump down to my hands and knees. I get a rush of a headache that usually goes away right after, but sometimes lingers for a little while.

Is this just normal, or at least probably unrelated to a possible seizure disorder? That I don't even know I have yet, so I should probably stop thinking about it! I've just spent so long feeling like something isn't right with me and second guessing myself saying nothing is wrong I must just be looking for excuses that I've totally confused myself. I had my thyroid checked because I thought maybe that was why I'm so tired all the time and get light headed. Then I was just getting used to the doctor's suggestion of trying antidepressants when I have a seizure and possible epilepsy comes up. I feel like a hypochondriac.

 

[Nakamova]

Hi Liv --

I know exactly what you are describing and I do think it's related to the seizures, at the very least as a contributing trigger. Do you have low blood pressure? And/or get dehydrated? Both those things can lead to the sensations you describe and also affect oxygenation of the brain, which can in turn trigger seizures. Low blood pressure may not be a primary cause of your seizures -- that could be something else -- but it can definitely act as a trigger to push you over the edge if you already have a low seizure threshold.

I used to experience the lightheadedness/vision blackout/dizziness especially if I stood up after being crouched down (like looking at a library book on the lower shelf), or if I stretched my hands above my head. Now it doesn't happen as often, in part because I've trained myself not to do those things quickly. One thing to try: Before you stand up from a sitting position, flex your legs at the knees a few times, almost as if you are pumping them. That actually helps to "pump" blood to the brain so that there is likely to be the lag and lightheadedness as you stand up.

Don't worry about being a "hypochondriac". Paying attention to how you feel at different times, and looking for triggers is one of the best ways to approach a seizure disorder (or any other health issues for that matter). I wish I had paid attention to small odd sensations before I eventually had my first tonic-clonic. In retrospect they were tiny seizure-related symptoms. They were small and infrequent so I ignored them. I'll always wonder what would have happened if I paid them more attention.