Trying to cope with the diagnosis

[DadofTwins]

Welcome. I am the parent of someone who has just been through what happened to you. My 16 year old daughter had her first three seizures since May 1. I understand how scary it can be, but you are in the right place. There are many helpful and compassionate people who really care. As you go on this journey, please know that you are not alone.

 

[JLogefeil]

You can vent here. Did the test show up that you have epilepsy? Or did the doc just go off of you past medical history? We're here if you need anything. (hugs)

 

[Laura In Arizona]

Hi C_Comardelle,

I know how you feel. When I first met my epileptologist I told him, "I can't even say the word". He smiled, put his hand on my knee and said, "I don't care if you call it Fred." Then he went on to discussing how we would approach treating it. I hope your doctor is as supportive as mine. If not, find another. You need to know you can trust and count on him or her.

Cheers!
Laura

 

[Bathtub]

I'm a newbie parent too, and yes it really does give you a nasty scare!!

Adjusting to the rollercoaster ride between the initial scare and then the "post-crisis letdown" (It might never happen again, but it probably will one day, we just don't know when) that seems really hard. You can't live forever on tenterhooks, but almost scared the day you relax will be the day it happens again?

 

[qtowngirl]

Hi C_Comardelle,

I know how you feel. When I first met my epileptologist I told him, "I can't even say the word". He smiled, put his hand on my knee and said, "I don't care if you call it Fred." Then he went on to discussing how we would approach treating it. I hope your doctor is as supportive as mine. If not, find another. You need to know you can trust and count on him or her.

Cheers!
Laura

Now THAT is a doctor who everybody needs. Congrats Laura, I'm happy for you; I have a good epileptologist too and only wish it could be that easy for everyone. Reading a few posts I had tears in my eyes but when I came to 'Fred' just burst out laughing. That will be one I'll think of often, thank you for the laugh today.

 

[RachelinAZ]

I think a lot of us were hit from out of the blue when we had our first "known" seizure. It is pretty scary. ((((hugs))))

I love how people who have had "E" for a while/long time/forever are so caring and upbeat. Although I've had seizures since 1991, reading the upbeat replies, always makes me feel even better than when I first came on the site.

 

[Bathtub]

A few people higher up this thread have talked about extreme tiredeness. Ongoing fatigue, day in day out for months, even years is what I'm reading, here and elsewhere. After my daughter's recent seizure, the doctor said she should be sure and get loads of sleep (what, and miss the party?? yeah, riiiiight.) I'm trying to figure out if it's a trigger factor like he suggested, but some of you seem to be saying the episodes actually cause the tiredness too? I know some of the drugs can, but she's not been prescribed anything yet. I guess if you are having disturbed sleep I can see you would be tired every morning, but if it's not enough to wake you, how would you know?

 

[Abynorml]

first, lack of sleep is pretty much a standard trigger for most people here, your brain need downtime. Second a seizure can just leave you feeling exhausted and can make it hard to think, like you havent gotten any rest, the duration of this differs for everyone, after my last two simple partials I couldnt think straight for awhile, and it was very frustrating, it was kind of like having a page missing from an instruction manual, you just cant put simple things together, things youve done a hundred times like cooking a dinner, or getting ready in the morning for work. Or trying to write an intelligent reply to somebodies question on an internet forum (Im having a small moment as I type, had a horrible migraine today, and missed a dose of primidone.)
it took me a half an hour to write this.

 

[Bathtub]

Thank you so much for taking the effort to reply and explaining it so clearly. I can see how frustrating it must be I've had a foggy brain in the past due to medication while I was also adapting to a new work environment, made it all soooooo much harder.

 

[DadofTwins]

JLogefeil,

All tests were fine. VEEG, 70+ hours, MRI with and W/O contrast, Catscan, blood and urine.

 

[DadofTwins]

Abynorml & Bathtub,

I understand that lack of sleep can be a trigger. My daughter has a shirt that saws "Got Sleep?" She has gone many a night with 3 hours or less and we have discussed it with her and explained the need for more.

Thanks for your input.

Tom

 

[DadofTwins]

Apologies to all. I was off track, but thank you all.

Tom

 

[c_comardelle]

first, lack of sleep is pretty much a standard trigger for most people here, your brain need downtime. Second a seizure can just leave you feeling exhausted and can make it hard to think, like you havent gotten any rest, the duration of this differs for everyone, after my last two simple partials I couldnt think straight for awhile, and it was very frustrating, it was kind of like having a page missing from an instruction manual, you just cant put simple things together, things youve done a hundred times like cooking a dinner, or getting ready in the morning for work. Or trying to write an intelligent reply to somebodies question on an internet forum (Im having a small moment as I type, had a horrible migraine today, and missed a dose of primidone.)
it took me a half an hour to write this.

You made me really lol just now!!! My dad asked me to order a pizza last night and it literally took me 30 minutes to type a few things. If it wasn't for this site I would still be considering asking my husband to bring me to the psych ward.

 

[c_comardelle]

You can vent here. Did the test show up that you have epilepsy? Or did the doc just go off of you past medical history? We're here if you need anything. (hugs)

My eeg showed slowing in the front and temporal lobes. My neuro really didnt explain to me what that means. Which is frustrating!! Do you know what this means??

 

[c_comardelle]

Hi C_Comardelle,

I know how you feel. When I first met my epileptologist I told him, "I can't even say the word". He smiled, put his hand on my knee and said, "I don't care if you call it Fred." Then he went on to discussing how we would approach treating it. I hope your doctor is as supportive as mine. If not, find another. You need to know you can trust and count on him or her.

Cheers!
Laura

I think I need a new doc, he is not very helpful. And definitely doesn't make me laugh like yours seems to do!

 

[Nakamova]

Slowing is considered an abnormality, but it's also a very common EEG finding. It doesn't necessarily indicate seizures, though it is often present in people with temporal lobe focal seizures.

Focal slowing suggests a problem, but it doesn't necessarily specify the nature of the problem. It could be from a tumor, a stroke, or it could be because the person is having a migraine, or has just come out of a seizure. Both low and high blood sugar can also cause focal slowing from time to time.

The slower the brainwave is, the more serious a problem it suggests. If there are continuous bursts of slowing that implies that epilepsy is the cause. If the slowing is described as "rhythmic" or if it shows "frequency evolution," epilepsy is likewise indicated. And when the focus of the slowing is in the temporal area, epilepsy is again the most likely culprit.