Need help...

[luglio]

I recently had my first and hopefully only grand mal seizure ever...I was out for three days, two of which I spent in the hospital's ICU.

Now that I'm back at home on my own, I feel like a different person. The things I used to enjoy doing (ie. writing) I now have no interest in. I have a pet lovebird and since I got home I don't even want to get her out of her cage like I used to. I've suddenly become afraid of the dark and have spent the last few nights since getting home up drinking coffee and sitting in my computer chair with all the lights in my apartment on. I've been unable to sleep except in the late morning through to the early afternoon though I'm a college student so luckily this change in sleep habits probably won't be too bad for me. Every so often I am overcome by these intense...I don't know, shivers of fear or something, which reduce me to tears. It's driving me insane.

I don't know why I'm telling you this. I just need to vent I guess. Thanks for reading if you have. Feel free to offer any comments you may have.

 

[CrunchyFrog]

Have you been put on medication? Sometimes medication can have an affect on the way you feel, lots have people have been describing feeling the way you are on certain meds.

It also could just be that you're emotionally still trying to figure things out, I only lose a few hours when I've had my seizures so I can imagine that losing three days must be difficult. Where are your family? Maybe you should let people around you know you're feeling the way you are, sometimes just letting people know so they can help support you can make all the difference.

I certainly hope that you've had your last seizure too..

 

[Nakamova]

Hi luglio, it's not unusual to feel strange after a grand mal seizure. Not only has your body been put through the wringer, but your brain has too, especially during the very first seizure. I remember feeling a lot of confusion and emotion at the time. And as CF says, medication can sometimes exacerbate moods, so if you've been put on any that might be contributing.

Did they do an EEG at the hospital? Did they make an appointment for you to see a neurologist? If you were in the ICU I assume your seizure must have been fairly intense. Were you give any instructions for follow-up? For instance, I would recommend staying away from the coffee -- caffeine and other stimulants can be tricky for folks with a lowered seizure threshold -- which may be the case for you even if you only have the one seizure ever (as I sincerely hope).

I recommend that you write down everything that happened in the days (or weeks) leading up to the seizure, everything you can remember from the seizure itself, and info from the hospital stay as well. Also keep notes on how you are feeling now, including the emotional changes. The pre-seizure info can potentially help identify any triggers (like stress, fatigue, dehydration, etc.), and keeping a current journal can be helpful to any doctors you may see next. If your mood changes persist, definitely see a doctor.

Do your best to be pro-active about your general health. Make sure you are eating and drinking properly. And don't be shy about asking for help.

Best,
Nakamova

 

[bombom]

Hi! luglio! I have had sz since I was 3yrs old, I'm now 38yrs. old so I have had them for 35yrs already. I believe that yes the feelings that you're talking about have to do with that big sz. You see the chemical imbalance in each of our bodies are different so in your situation that's probably why you're going through and feeling this way. What you said about having trouble sleeping I was going through the same thing yrs ago. So my doctor proscribed me a sleep med. it has really worked for me to help my sleep habits. You might want to ask your doc. about these. It also could be one specific med that you're taking. I love to read that's one of my passions, but lately I have lost my concentration, focus, motivation, and I have lost interest in even the smallest things in my life. Most of all my reading. I'm trying to get my docs to check in on this so that maybe they can change one of them, because if your body starts getting imune to a med it just seems to stop working the way it use too. I hope maybe what I just shared with you will give you a better idea of how to go about getting the help you need.

 

[Lola Lolushka]

Hi luglio,

As others have stated, you have every reason to feel the way you do - seizures are hard to comprehend, and to be honest I think it's harder to accept them as an adult rather than having them as a child. Has a trigger been identified? By the way - I know of about 6 people who have had seizures at some point in their life - but only one (aside from me) has actually been officially diagnosed with Epilepsy. Here's hoping for your first will be your last...

 

[luglio]

Thanks for all your replies. I actually ended up going back to the hospital (I called my mother and she came and picked me up) last night because I was afraid that I was getting closer to another seizure, and I did get worse but then they gave me some medication. I started feeling better and I left after a while and went home and fell asleep.

To answer some of your questions now...

I haven't been put on any medications in the wake of this. The doctors performed some tests on me while I was in the hospital, and I'm supposed to arrange further tests including CAT scans and some others. I don't know when those will happen; the people who perform them are supposed to call and when they do we will discuss scheduling. I assume this will all take place shortly but in truth I don't know.

And I have no idea what it felt like immediately prior to my seizure; from my perspective, I was just sitting down eating dinner with some family members and then three days later I woke up in the hospital with tubes coming out of me. They said that I just stood up and started vomiting everywhere and then fell down.

The worst part of it is being deprived for my driver's license for (at least) six months. If I can go six months seizure free, then I get my license back in the new year. But I live in a very car dependent city with poor transit, and the nearest bust stop to my home is a 15 minute walk away each way.

I hope i can go six months without another one and look forward to the new year.

 

[survivor]

Dont worry, all will turn out well! After proper diaganosis and treatmemt u will feel much better. Dont worry about the changes going on with u, it happens dear! We all went through this but today many of us are leading a normal life, so be hopeful and do what the doctors suggest. Keep posting!

 

[Endless]

Luglio,

Please call the hospital and ask for a copy of your records. It should say what neurolotistss they referred you to, so you can call those neuros and follow up to get an appointment.

Also, it is so important you get those follow up tests, and fairly quickly. So please do follow through.

The emotional symptoms you have been feeling are common. Seizures themselves can cause emotional swings and depression.

I'm so happy you came here to vent. That's what we are here for. Please keep coming back and letting us know how you feel, and how it's going with the docs.

 

[Lola Lolushka]

Hi luglio,

I have one piece of advice - ask questions! Doctors only ever seem to tell you the bare minimum, and you practically need an MD to be understand them. Write the questions down - any time I go to see a neurologist I go in armed with many questions and become so flustered I don't even ask half of them.

Best of luck.