Newly diagnosed with Epilepsy

Posted by eeegreen @eeegreen, Aug 2 6:31pm

Five months in, and they seem to be ramping up. Feedback?

Liked by Leonard

@eeegreen
Could you share more about your situation?
I’ve had Epilepsy for 53 years.
Take care,
Jake

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@eeegreen
I wanted to mention as I’m sure you already know the most essential thing is to take your medication regularly, don’t miss a day like I did. I had 6 seizures after none for 8 years. Meds should be taken at same time/s. Especially if taken multiple times a day. Specific time/s aren’t necessary for everyone but some have seizures not long after medication was due. My doctor always tries to give extended release medications when available. Some benefits are,
1. once a day vs 2-4 times a day.
2. blood serum level is more consistent.
3. sometimes fewer side effects.
4. possible better seizure control.
You may also want to keep a seizure diary especially if your seizures are uncontrolled. You may be able to find out what your triggers are if any, Although many have no memory of seizures or activities prior to. List all emergency information & medication, where it happened, time, date, did you eat, time it lasted, quality of sleep, seizure type if you know, time took medicine, stress/depression level, menstrual cycle, alcohol how much, details of aura, seizure, post ictal details, video if possible.
Hope your seizures are controlled.
Best of luck,
Jake

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Jake, thank you. Thank you very much.

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@jakedduck1

@eeegreen
Could you share more about your situation?
I’ve had Epilepsy for 53 years.
Take care,
Jake

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I was a terrible drunk 2015-19’.. my Sister saw me in mid-conversation “go away, drooling, eyes not focusing”.. I thought it was a drunk thing. 5 months post sobriety, I was in a car accident (July 19’) Zero memory, I now recognize the pre-seizure warnings. But, I didn’t then. I really thought it was a dry drunk moment. *I’ve been sober since June 13, 2019*
In February, I was a month into a new job and had a fall down, pass out, piss myself attack. I refused medical (no insurance), went home for the day. Then I had another one the next day, also at work. After X-ray (EEG¿, I think) a neurologist diagnosed me. I have been keeping a journal, and I take my lamotrigine x2 daily, it’s the only meds I take. I’m having mini seizures (?) no less than x2 day, I feel one coming on, and find a seat or the ground. I try to ‘talk’ my way through it. I’m aware of three blackout seizures whilst awake, and at least once while asleep (the tell is in my loosing control of my bladder). My Rx has increased since May, and a virtual doc meeting later this month. Are there any questions I might want to ask? You’ve been at this 53 years, that’s got to be one heck of a story Jake. You’re a good ambassador for us newbies.
I’m tired. I’m scared. This thing has or is consuming my life.
Wow! Jake, Thank you for asking, and understanding what this is. I avoid the topic w/ friends and family, how to convey..is difficult.

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@eeegreen
Sorry it took me so long to reply.
Thank you very much for replying it was helpful & thoughtful although I do have some questions.
“go away, drooling, eyes not focusing” I’m curious if this was an absence seizure or perhaps a focal impaired also known as complex partial, do you remember if your doctor mentioned either of these terms. Do you remember if you had a warning (Aura) before it happened. If you did have an aura do you remember if any of your other orders would like that one or similar. I don’t imagine you were aware of anything while this episode was going on and assume you had no memory of it other than what your sister may have told you. These generally last less than 30 seconds but it depends on the person. Epilepsy is a very personalized condition frequently differing in symptomatology. Take for instance a focal seizure or partial as they are sometime still called because they start in one specific part of your brain and symptoms differ wherever the seizure starts. Hey Cesar you mentioned where you fell down passed out and lost the ladder control it is consistent with a tonic clonic seizure. Did you sleep after that and/or were you confused. It’s very seldom necessary to be taken to the hospital for a seizure anyway. Don’t refuse if your seizures last more than five minutes, that would be what is called convulsive status epilepticus, it’s serious and requires immediate medical attention. A major problem with seizures is the longer they last he more difficult they are to stop. If they can’t stop them they have to put the person into an induced coma.
Do you remember what the Neurologists diagnosis was?
Do you remember if your EEG showed any abnormalities? Did your x-ray show any lesions or other abnormality?
What do you mean by mini seizures? I thought at first you were talking about an absence seizure which is a generalized seizure that you’re not aware of so I’m wondering if what you’re talking about is a focal where is seizure or what used to be called a simple partial. Can you explain exactly what happens during these episodes and how long they last. Has your neurologist told you specifically want any of these episodes were? Tonic-Clonic, Grand Mal, Focal Aware or Impaired, Partials, Simple or Complex, Absence? My Nero believes I had an Absence recently, I’m not so sure myself. I was in Costco and I have got a horrible pain in the back of my neck and then my legs became extremely weak I wasn’t sure I could make it somewhere to sit down but I did. Glad to hear you have a journal. there is so much information you can include in them that may lead to the trigger of your seizures or give the doctors other valuable information. be sure to include as much information as possible in it provided you remember it which is usually the main problem.
you stated ”I’m aware of three blackout seizures whilst awake, and at least once while asleep” how do you know you were aware of what happened where are you were asleep? are you referring to the aur? I understand you lost control of your bladder but you don’t actually remember that occurring do you?
I ask your doctor the results of any tests that he is performed and if any of them were positive I would ask him what the specifics we're and what your diagnosis is. what type of seizures you’re having. you may want to ask if he has any idea why are you began having seizures which I’m 99.9% sure he does not. however if he does explaining how your seizures begin ask him exactly how he knows that. it’s best to take someone with you to your neurology appointment especially if they have witnessed any of your seizures we may be able to add some thing that you have forgotten. You may want to ask your coworkers if you ever have a seizure again at work to videotape it and then take that to your neurologist.
i’m not sure if you live alone or not which involves more risk but I would suggest never take a bath unless someone is with you people have you been drowned taking a shower but that’s a very very rare occurrence. if you cook on the stove it’s best to use the back burners although the safest method of cooking is a microwave and the best way to wash dishes in the dishwasher although I don’t have one so I don’t feel the sink with water. There are lots of dangers. furniture with sharp corners, coffee tables, People have fallen on them hit their head got cut and bled to death, never swim alone. If you ever have nocturnal seizures make sure you have an anti-suffocation pillow which is
something no doctor will tell you.
You made a comment that greatly concerns me,
” I avoid the topic w/ friends and family, how to convey..is difficult.”
since having a seizure or actually three or so at work I would assume some of them saw them so they know exactly what happened if that’s the case. I would imagine your family knows you have epilepsy it’s important because they may need to be involved in your care during a seizure during a seizure. we may need to put you in the rescue position and they should definitely time your seizure depending on the length of time your seizures last if they last longer than usual, so for instance the last two or three minutes if they last more than five minutes they should call an ambulance or you could be in convulsive status epilepticus which is very dangerous.
remember epilepsy is nothing to be ashamed or embarrassed about so don’t refuse to talk about it based on those things.
Please don’t let epilepsy consume your life it’s something you’re going to have to live with even if they get it under control and you need to except it. Worrying about it being fearful of it isn’t going to do you any good whatsoever in fact it could do you much harm. Anxiety and depression are often triggers for seizures so if you have any of those issues try your best to bring them under control or to be treated for them.
My gracious I didn’t realize I chatted on and on reading this post is going to be worse than reading War and peace.
Blessings,
Jake

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