I think I have epilepsy

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Hello! I'm Emily, and I think that I might have epilepsy.

A little background: I have schizoaffective disorder and Asperger's syndrome, and was born three months prematurely.
Also, I'm sorry if I use some vague words when talking about time. My memory is terrible and getting worse.

My earliest memory is rather funny, now that I think of it. I was standing in front of the bathroom sink, and it seemed very large. It didn't look very large; rather, I had a gut feeling that it loomed above me. Everything around me seemed bulbous and huge. Nothing felt real, and I was one layer away from direct contact with reality. I couldn't feel my head at all.

Growing up, I suffered from migraines. Patches of my vision would just disappear, the holes fringed by flickering phosphene fractals, and I'd feel ill. Then would come the headache, the headache that would make it feel as though my head had been split in two and that one side of it was being hit wih a sledgehammer. My face would go numb and flop down on one side as though I'd had anaesthetic at the dentist. Sometimes the headaches were so bad that I'd have to lie down in a darkened room for the day.

When I was about 15, around the time that I started to take serious psychiatric medications (Zyprexa and Valium, at first), I stopped having migraines - at least, I stopped having headaches. All of the other symptoms of migraine continued. My vision would break down, and it would get worse the more I tried to concentrate to see. Too much visual stimulus - tightly packed text, flashing images - would send me into freefall. I would tremble and my vision would flicker and I physically couldn't concentrate on any one thing.

One day, one or two months before my 17th birthday, I took a ridiculous amount of sertraline tablets. I think I took 2g sertraline. I was just messing about. I knew about serotonin syndrome, and thought that it would be interesting. I remember feeling very giggly and hypomanic as I did it, deeply peaceful afterwards, and then going to bed.

When I woke up, I was on the loo. TMI!
There was diarrhoea everywhere
and I remembered nothing. I didn't know where I was and I didn't recognize my mother. After that, I fell unconscious again, and, when I awoke, I was in an ambulance.

It was explained to me that I'd had a tonic-clonic seizure as a result of serotonin syndrome. The paramedics commented that this was a surprising reaction to serotonin syndrome, and that I must have a low seizure threshold, but nothing more was thought of it. I thought that it was just the effects of the overdose. I soon went home, and got on with my life.

In early 2014, I started to take pseudoephedrine as a diet pill. I took it as recommended for a sniffy nose. Four or five days into my pseudoephedrine use, I was watching TV, and that's where my memories end. I woke up in an ambulance. I'd had a seizure, and my mother had called 999.

When I got to A&E, the doctor asked me if I'd been taking my anti-epileptic meds. I answered that, no, I didn't have epilepsy. The doctor looked confused and asked why I'd had a seizure. I said that I'd been taking pseudoephedrine, and he looked disbelieving. I think that he thought I'd been doing hard drugs. It was embarrassing.

I went to a concert in April. I went to three concerts in April, in fact. I love live music. At this one concert, during my favourite song, they used a strobe. I had to concentrate my vision on the shadowed floor in front of the speakers, as I found that I felt queasy and flickery if I looked at the light. At one point I thought that I would faint. It passed, though, and I enjoyed the night.

Throughout my life, I've had strong, uncanny, disquieting feelings of deja vu when presented with things that I rationally know are unfamiliar. Lately they've been almost daily. I thought that everyone had them, and that they were what everyone referred to as 'deja vu'. Earlier this year, though, I was reading an article about an epileptic, and I realized that I recognized the deja vu symptom.

I never thought I was epileptic, though, until last month. In February, I went into a psychiatric hospital following a psychotic break. In May, I was taken for an MRI and EEG. I never got the results back from the MRI, so I assume that they had been unremarkable. When I went for the EEG, however, they tested me with a strobe. I remember lying on the treatment couch, watching the light. My eyes kept rolling involuntarily. I saw a dark figure similar to those I saw following me in the months leading up to my psychotic break, but I tried to ignore it. I remember nothing after that, until I 'woke up' in the chair in the middle of the room, in filthy clothes. I had to be told two or three times that I'd had a seizure before I remembered it.

Now I'm convinced that I have epilepsy. Everything has marched inexorably into place. I can't write this off as a 'low seizure threshold'. I also believe that my brain is degrading with every piece of seizure activity, be it a tonic-clonic or a deja vu, and that's why my memory and intellect are degrading so rapidly. I'm scared, I really am. I want to get medicated. I'm seeing my GP on Monday, but it's about something else; my parents think I'm being a hypochondriac when I say that I think I have epilepsy. I'm hoping to sneak the epilepsy thing in somewhere and hope that the doctor takes an interest in it. Until then, I'm just waiting for the next time it breaks in my brain.

Edit: I forgot to mention that I've had several instances of complete memory loss. I put this down to psychotic dissociation, but it could be seizure-related. I was once out for long enough to manage to throw a chair at a teacher. Another time, I ordered a coffee whilst out.
 
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Hi Emily, welcome to CWE!

I hope you can get a referral from your GP to see a neurologist, preferably an epileptologist. With your symptom and seizure history it should be pretty straightforward to be diagnosed, and an epileptologist can go over the medication options with you. Don't "sneak in" the epilepsy -- be upfront about your concerns, and be persistent in getting a referral.

In the meantime, it can help to record all your symptoms in a journal. It can be help the neurologist to get a sense of the nature, duration, and frequency of your symptoms. A journal is also a good way to identify patterns or triggers. It sounds like you've already identified at least one trigger -- photosensitivity -- but there may be others out there as well (things like fatigue, physical/emotional stress, hormonal fluctuations, metabolic issues, food sensitivities, etc.).

You're doing the right thing by seeing a doctor and taking steps to get your symptoms under control. The GP and/or neurologist should be able to explain things to your parents so they understand and accept any diagnosis.

You might want to ask about having a neuropsych evaluation done. It's basically a series of memory and cognitive tests that provide a snapshot of your brain function. It acts as a benchmark for measuring any future cognitive. Based on the test results, the neuropsychologist can recommend treatments and techniques that should help.

Best,
Nakamova
 
Hi Emily, welcome to CWE!

I hope you can get a referral from your GP to see a neurologist, preferably an epileptologist. With your symptom and seizure history it should be pretty straightforward to be diagnosed, and an epileptologist can go over the medication options with you. Don't "sneak in" the epilepsy -- be upfront about your concerns, and be persistent in getting a referral.

In the meantime, it can help to record all your symptoms in a journal. It can be help the neurologist to get a sense of the nature, duration, and frequency of your symptoms. A journal is also a good way to identify patterns or triggers. It sounds like you've already identified at least one trigger -- photosensitivity -- but there may be others out there as well (things like fatigue, physical/emotional stress, hormonal fluctuations, metabolic issues, food sensitivities, etc.).

You're doing the right thing by seeing a doctor and taking steps to get your symptoms under control. The GP and/or neurologist should be able to explain things to your parents so they understand and accept any diagnosis.

You might want to ask about having a neuropsych evaluation done. It's basically a series of memory and cognitive tests that provide a snapshot of your brain function. It acts as a benchmark for measuring any future cognitive. Based on the test results, the neuropsychologist can recommend treatments and techniques that should help.

Best,
Nakamova

Thank you for the advice. So, you think I have epilepsy, too? I can't convince my family.
 
Hi Emily! Welcome to CwE! It sounds like you had a seizure of some sort during your EEG--did they ever tell you the result of your EEG, or if an abnormal reading was recorded during this event? That would be an important bit of information for your next appointment. Either way, I agree with Nakamova, I would be assertive and stay assertive as you are comfortable with in regards to your parents and in your appointment that they follow up on your concerns. Many of us went a long time before a correct diagnosis was made and we were appropriately treated, and that is certainly not ideal. Best of luck and look to us for support any time!
 
Hi Emily! Welcome to CwE! It sounds like you had a seizure of some sort during your EEG--did they ever tell you the result of your EEG, or if an abnormal reading was recorded during this event? That would be an important bit of information for your next appointment. Either way, I agree with Nakamova, I would be assertive and stay assertive as you are comfortable with in regards to your parents and in your appointment that they follow up on your concerns. Many of us went a long time before a correct diagnosis was made and we were appropriately treated, and that is certainly not ideal. Best of luck and look to us for support any time!

Apparently the EEG seizure was a generalized tonic-clonic. It corresponded to seizure activity on the EEG leads. The hospital also has a video of that seizure.

Thank you! :)
 
In that case I'm mystified that any convincing should be necessary at all, with your parents, doctors or otherwise--multiple seizures supported by an abnormal EEG is typically considered sufficient for an epilepsy diagnosis. I definitely recommend not wavering in your discussion with your doctor and being very clear about your EEG finding and history. Your instincts are correct that you don't want to continue being untreated. I wish you the very best, and please let us know how this all turns out.
 
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Hi and welcome, Emily. I second everything Nakamova and Lindsay said, and I hope you can get to an epileptologist soon. Also, learn everything you can about epilepsy and the various treatment options, med side-effects, etc. because you may find that you have to go to bat for yourself sometimes, and you need to have lots of information. It's true that seizures (and meds) can degrade your mental functioning, but perhaps not too rapidly. I've had seizures (mostly complex partial, with about 5 tonic-clonics thrown in) for over 30 years and am still mostly OK mentally, though I definitely have memory issues. I also have prosopagnosia, which may or may not be related to the epilepsy. (If you don't know what prosopagnosia is, Google it. It's kind of an interesting condition!) My partial seizures are very poorly controlled, and I have 250-300 per year, more or less.
Anyhow, welcome to the amazing world of epilepsy! Please keep us posted on how things go for you.

Cheers!
 
Hi Emily, welcome to CWE. Your best bet right now is to see a neurologist because they know more about brains than any of us in this forum. In the meantime, identify other triggers like the photo-sensitivity you mentioned. This would help you prevent seizures in the future and help your neurologist in diagnosing you. Hope everything goes well with the GP visit!
 
Hi, Emily
Do your best to get a referral to an epileptologist (a neurologist who is an epilepsy specialist), rather than a general neurologist. Good luck and I hope you get seen quickly and get things under control.
 
Hello Emily,
welcome to cwe.
Unlike the others I'm satisfied with my neuro because I've had bad luck epileptologist and found that they weren't so smart and they didn't always look in my case were my neuro did but he use to be a professor at Emory University.

I've had my neuro for 23 years and he listens as to where the specialist wouldn't take time on my case and would expect me to do the leg work like the last one.
I have partial seizures, tonic clonic sz's and some times absence rarely.
 
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