Post-ictal phase...wtf?

[appsandsuch]

Hey guys,

I'm breathing deeply in order to write this thread. Ever since my cluster of odd seizures the other day (Saturday night/Sunday morning) I've felt extremely off. Granted, things have gotten a little better, but not much.

Initially, on Sunday, all day I felt extremely depressed- a depression I had never felt before. I just sat around and waited for something...anything...to happen. I kept feeling like I was going to have another seizure- i was scared out of my mind. I was also, understandably, extremely tired, so I slept on and off. Later in the day, I also had extra meds in my system, though- some Ativan that I'm not used to having there, so perhaps that helped a little.

Yesterday, Monday, I stayed home from work and was lucky enough to have my boyfriend work at home with me because the idea of being alone terrified me (normally I enjoy my alone time.) My fear wasn't as strong, nor was the depression, but it was definitely still there - I can't think of anything that excites me- I'm not normally like that. I didn't feel like myself at all. And this was after almost 12 hours of sleep (slept from 8 - 10 during the superbowl and then 10 - 8 am again.) I believe I used Ativan again, but I can't remember because my short term memory is shit. I can barely remember what I just opened the fridge to get.

Today, I was hoping things would be a bit better. I think, because I'm forcing them to a little bit by going to work (I couldn't stand being at home anymore) and because I saw my neurologist yesterday and talked about some options, my spirits were lifted from the pits to the shallow pits. I just don't feel like myself. I felt off when we got home last night from the doctor so another Ativan it was, and slept for awhile.

When I got up this morning, i was hoping to feel a lot better, as this is the third day and three days just seems like a really long time for a post-ictal phase to last. I've never dealt with this before- ever- for any length of time. I'm still having memory issues, I still don't feel like myself, I'm still scared of everything, I still have no appetite. On the bus to work, I started feeling awful- like I was in an inbetween mental state- like I could lapse into a seizure at any minute. When I walked into work I took a small dose of Ativan to get me through, but I certainly don't want to be relying on it when, just three days ago, I spent five of the best weeks of my life just being myself, no seizures, no auras, no anxiety, nothing.

What is going on? Tell me about postictal phases. Tell me about how to deal with them. Why am I freaked out about everything? Why don't I feel like me? Why do I have no memory? No appetite? When will I be normal again? I could cry and cry, but I know the only reason I'm able to type this is because there's a benzodiazepine in my system- otherwise, I'd be worrying about what's going to happen to my brain in two seconds.

This is awful. Please help.

Sarah

[Nakamova]

Hi Sarah,

Last time I had a seizure, it took me a month to feel like myself. The day before I had the seizure, I had taken my laptop into a repair place because the hard drive had been fried. The next day I had a major tonic-clonic and my own "hard drive" got fried. I couldn't figure out where my laptop was. I told a friend that I thought it had been stolen. I was pretty banged up, though nothing irreparable. But all I could do was sleep. My sister took me into the ER twice because I was so sluggish, and she was worried that I had had a concussion. (It turned out dehydration and an infection were making things worse). Over the next month I felt so strange and dim. A friend of mine called every day to check up on me and answer simple questions because I felt so out of it.

I ended up switching meds as a result, and things have been fine since.

[Nakamova]

By the way, although the Ativan may be helping, it also has side effects that may be affecting you. Some of the side effects are listed below:

Sedation/fatigue/drowsiness
Dizziness
Weakness
Unsteadiness
Memory loss
Confusion
Disorientation
Vertigo
Vision changes
Headaches
Slurred speech
Nausea

[appsandsuch]

Hey Nakamova,

Oh wow, a month? I'm not sure I can handle a month like this. Do you mind if I ask what med you switched off of? I know they're different for everyone, but I'm curious. Oh, also I did find some local neurofeedback practitioners. I'll send you some links.

Sarah

[appsandsuch]

Yeah, I'm not a huge Ativan fan. I just don't know where else to turn right now

[Nakamova]

I had been on Zonisamide. I switched to Lamictal.

Over the course of the month I was improving, but just slowly. And since I was switching from one drug to another, I had both drugs in my system while I was trying to recover -- that probably contributed to my sluggishness.

[appsandsuch]

That's interesting. The only other time I've had seizures without auras and in a cluster was when I was bringing up my Zonisamide levels (from pretty much nothing to 150 mg x day.) It's back down at 75 mg, and I've been waiting until I was stable for awhile to bring it out of the mix (I've got Vimpat, Carbatrol, and a little bit of Klonopin to help out my daily life.)

As of yesterday, I'm now on the road to getting Zonisamide out of my system completely. Even though it was such a low dose, hopefully that was what changed everything around and made me semi-catatonic this time. Fingers crossed.

[Nakamova]

Yeah I think Zonisamide has an iffy track record. I was on 200mg, and it messed up my stomach and appetite, and then my blood sugar, so it seemed to cause more problems than it solved.

I hope you feel better soon. You might want to take notes to help with your memory, and so you can maybe track how you're feeling.

[Deb12345]

Hello Sarah, when was the last time you had a major seizure? When I had two tonic-clonics in one day, last year, I felt ok after a good nights sleep and was quite happy for the rest of the week (I was in hospital at the time), then it hit me. On the Friday evening (a week after the seizures) I suddenly got very, very frightening auras which seemed to last forever. I staggered into bed and cried and cried until I eventually went to sleep. Over the next 4 / 5 days I thought people were plotting against me. I didn’t even trust my own family / hospital doctor. I was seeing and hearing things. Was very frightened. I went in and out of laughing fits, followed by depression (crying fits) and anger etc. I felt each episode coming on but could not control them. It felt like fluid was moving around in my brain. I didn’t have a clue what was wrong with me, nor did the doctor nor nurses – I was put on a stomach ward after my two seizures?!!! I was very scared. At one stage my sister walked me to the bathroom when I was relatively ok, then I felt another attack coming on and went into a drunken state and couldn’t walk properly, so my Dad and sister had to struggle to get me to my bed. Eventually on the 4th day I somehow managed to control the attacks from happening. I was having a big fight against my own brain. It took time for my brain to recover from the trauma and had to rest for a few weeks. Plus I kept having very vivid auras. At the time I didn’t know I had epilepsy so thought I was going mad. My Neurologist has told me postictal state can last up to 1 to 5 days. In other words you will get better and you will come out of it but give your body sometime to recover / take a break. I didn’t want to scare you but just wanted to reassure you that all will be ok. You are not alone. Here is a site about postictal state: http://en.wikipedia.org/wiki/Postictal_state
I had both postictal psychosis and postictal bliss. Touchwood I haven’t had them since I have been on my epilepsy tablets. On the other hand you may well just be experiencing side effects of your tablets. Either way I wish you well. I hope today has been better to you. Best wishes Debbie.

[stilldancing_98]

You might be having small siezures. How many mlg.s of ativan are you taking. Let your Dr. know.But I think I know what you are feeling. It sort of feels like fear with a siezure. I thought I was paranoid. I went to the epileptologist they monitored me right away. They were siezures.And when I have them in clusters. I do take lorazapam (ativan) for them . Of course my Dr. and I are on the same page. And depression will set in. But report it and you will be ok.

[appsandsuch]

I've had my simple partial seizures present as anxiety since July, so that's definitely nothing new, and I always have them in quick clusters. I started taking Ativan for them, but I don't like what that does to me, so i try to avoid it if possible. (Especially since I'm already on a small dose of klonopin regularly- i want to cut down on my drugs if I can!)

But after a lot of research, and a cluster of anxiety simple partial seizures tonight, after which I finally felt normal again (1 week later! Holy crap that was one REALLY long week), I'm realizing what happened wasn't simply postictal depression, but interictal depression. It's the most bizarre thing I've ever experienced...and I have seizures I'd never heard of this stuff before. I've never felt so low in my life. I'm learning that it's not all that abnormal to happen after complex partial seizures (which I don't have that often...in fact, I can probably count the number of them that I've had on two hands, maybe even one.) My neurologist pretty much confirmed this week, after looking at my most recent MRI, that I've got Left Focal Temporal Lobe epilepsy, which just reinforces that this depression was very much chemically related to my seizure...not that there was even a question in my mind.

I guess now I wait to see if these complex partial seizures are going to become a regularly part of my life after 16 years of mostly simple partial seizures with a few tonic clonic seizures thrown in (please God let them remain simple partial seizures ) and then, the next time one of those happens, see if this interictal depression comes along because, honestly, I felt like I was the most depressed, paranoid, insane individual in Boston. (I suppose it didn't help that I was PMSing for part of it, and then dealing with Ativan withdrawal as well.) I don't want to go on an anti-depressant, but I can't live like that, and if it happens again, and I don't know when the next seizure is going to come and relieve me, I don't know what to do.

On the upside, this has pushed me to really pursue Neurofeedback, even though it's going to mean going down to NYC to do it, because now not only do I need to control seizures, but apparently I need to control depression and emotions as well...really hoping it's just the thing to help.

[appsandsuch]

Oh, and the first thing I meant to say was Thank You All for responding and sharing- it helps to have you guys here and understanding

[Nakamova]

Let us know how the neurofeedback goes for you. (I guess you couldn't find the right practitioner in the Boston area?)

[appsandsuch]

Nakamova- there's a bunch of practitioners around here, but I can't seem to find one with decent epilepsy experience, and if I'm going to invest a ton of money into something, i want to make sure I'm getting the best

[Meetz1064]

Sarah. I have to say that I'm like Nakamova in the post-ictal department, but I'm like that for EACH t/c. Which bites a hill o'beans........especially when u have them close together.

Why not talk to the neurologist about changing out the Ativan, and your meds? The neurofeedback is a great idea. I do hope that you can find a practitioner that fills the bill though.

You might want to start recording things, as best as you can in a journal, to help you. It'll help your doc, too, in the long run, to understand how the meds are really affecting you.........

Take care!

Meetz