Just spent almost two days in the hospital

[Eggbertx]

So I figured I may as well stop being a stranger and introduce myself. To quote the "Seizure background" section of my profile:

I was born with hydrocephalus, and had a shunt implanted in the right-rear section of my head. My hydrocephalus seems to have caused grey matter heterotopia (stiffening of a section of the brain, often a cause of epilepsy), but I wasn't diagnosed with non-photosensitive epilepsy until my second seizure in May 2013 (apparently it's pretty rare, considering my condition to not have any seizures at a young age, and we don't know why it never happened until recently). The first was a year before, but we attributed it to a medication I was on. All three were tonic-clonic seizures.

I don't remember the exact phrase describing it, but while I was about to eat breakfast, I went into seizure state(?) and had several seizures, one after the other, so I was taken to the hospital and I spent the night in the ICU.

Can epilepsy cause any kind of body dysmorphic disorder? I felt relatively normal before this last ordeal, like I could just ignore my condition as long as I was diligent with my meds, but ever since then, my body has felt almost alien to me, like a broken down car

 

[Nakamova]

Hi Eggbertx, welcome!

What anti-seizure meds are you on? Sometimes they can have psychological and/or physical side effects that can alter perception.

Another possibility is that you are experiencing a kind of seizure called a simple partial. Simple partials feature sensory disturbances, including things like out-of-body sensations or alice-in-wonderland syndrome (where you misperceive your body's size). You can read more about simple partials here: http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures

Best,
Nakamova

 

[Eggbertx]

I'm on lamectal. And I don't think it's like that, they never made me feel like this before. I suffer from grand mal/tonic clonic seizures, not simple partial.
Maybe dysmorphic isn't the right word. I mean it feels like my body and brain are a rickety unreliable car

 

[Nakamova]

I've felt unusually "rickety" a few times. The first was after my initial seizures, when I was trying to recover from the physical trauma and was also over-medicated on Dilantin.

I also felt pretty lousy after a seizure I had 6 years ago. That one was made worse by dehydration and low blood sugar, as well as by the extra dose of anti-seizure med I was mistakenly told to take by the epilepsy nurse. It took me a month or so to feel like "myself".

I would give yourself some time to heal from your recent hospital visit. If you're still feeling shaky after a a few weeks, or feel yourself getting worse, let your doctor know. It could be that your medication needs adjusting. Testing for Lamictal levels and a general CBC might be useful. Lamictal gives me subnormal white and red blood cell counts (all the AEDs have had this effect on me), which can cause fatigue. I've found that a B12 vitamin supplement helps with this.

You might also take a look at ways to improve your overall health -- tweaking your diet or physical routines can sometimes make a big difference.

 

[arnie]

Welcome! I agree with what Nakamova says, and would like to add that I have often had strange feelings that I'm sure are epilepsy-related, but are pretty hard to accurately describe. Epilepsy can be kind of like that.It's hard to know what is something that is due to meds or unusual seizure activity, or just a "normal" part of the effects of E. Keep in touch !

 

[Eggbertx]

I've felt unusually "rickety" a few times. The first was after my initial seizures, when I was trying to recover from the physical trauma and was also over-medicated on Dilantin.

I also felt pretty lousy after a seizure I had 6 years ago. That one was made worse by dehydration and low blood sugar, as well as by the extra dose of anti-seizure med I was mistakenly told to take by the epilepsy nurse. It took me a month or so to feel like "myself".

The doctors think that low severely blood sugar was the cause of these seizures, they ended up having to put glucose in my IV drip.
It looks like I am going to have to start tweaking my diet though. This never happened to me before, even with my other seizures, I wonder what started it now?

It's hard to know what is something that is due to meds or unusual seizure activity, or just a "normal" part of the effects of E. Keep in touch !

In my case, I think I remember feeling this way after my other seizures. I know they screwed up my memory,but I don't remember if they caused me to feel this way. Ever since I got out of the hospital, I've felt like I'm in a fog.

 

[Nakamova]

I know they screwed up my memory,but I don't remember if they caused me to feel this way. Ever since I got out of the hospital, I've felt like I'm in a fog.

If you can, keep a journal of how you are feeling. It will help you track how long the fogginess persists, and give you a sense if it is lifting. It will also give you a frame of reference if there are future seizures/fogginess.

For me, the duration of the post-seizure fogginess seemed to correspond with the severity of the actual seizure, if there was hospitalization involved, and also the condition I was in when the seizure hit (i.e. dehydrated, ill, low-blood sugar or otherwise physically stressed).

 

[Eggbertx]

I've never really been much of a journal writer, or a writer in general. I've always been too laconic. But I guess it's worth a shot.
Considering they made me sleep in the ICU, it was probably pretty serious, but my memory from the time of seizures to that night is very patchy. I don't think I was even that stressed, I just followed my usual routine of watching some animu or something when it happened.

 

[Eggbertx]

Despite the fact that my most recent seizure was actually a seizure cluster that resulted in an overnight stay in the ICU and was caused by low blood sugar (I had very low blood sugar when they measured, so we think that was likely the cause), my memory seems to be fairly intact, thankfully.

 

[Bidwell]

I just want to mention that whenever I have had low blood sugar my body and brain have felt rickety and unreliable even without seizures being in the picture. Good luck!