Dangerous and Strange things I do after seizures

[moongal]

Hi there, I'm new here I've had epilepsy for 14 years now but over the past 2 years the seizures have gotten really out of hand. It used to be so long as I took my medication everything was fine but now not so much and I've started getting tonic clonic seizures one after another last week I ended up having 6 TC seizures over a 2 day period and the month before I had 5 TCs in one day.

I find I am absolutely exhausted after them and have a raging headache that nothing can cure. I also find I do very strange things after them like last week I was in hospital and I just started walking around the wards and nobody could get me to go back to bed, the month before I hopped out of my mum's MOVING car. (luckily she just about managed to pull in on time)

This worries me greatly as it is so dangerous. Those around me have said I am very hard to reason with after a seizure that I'm like a zombie that can't be controlled. I think though that after the TC seizures that I may be still having absense seizures and that's why it's so hard to communicate with me. I have also been told that I can't take neurofen or solphadine which I did not realise until this week which I have taken in the past for bad period pain. Also I am more likely to get TCs during my period.

Can I ask does anybody else do weird things after TC seizures? Other times I have tried to climb into my mam's wardrobe and a couple of other times I have gone into the bathroom put the toilet seat down and just sat there for quite a while, nobody could get me to just come out. Is this just me? Also the recovery from my seizures takes well over a week. By now but I'm not sure if its because there were so many? And I still feel like I'm floating in a dream or something? Something just doesn't feel right.

My epilepsy never used to bother me, but recently its become something I really fear. Anybody else felt like this? Also I'm on new medication (phenytoin and zarontin syrup) that is making me feel so nauseas all the time.
Has anyone been on these and do these side effects pass?

 

[valeriedl]

I very rarely have tonic clonics only partial seizures so I can only tell you about what I do during and after them.

When I usually have a seizure I'll just stare off into space, sometimes "talk", but it's just mumbling that's coming out of my mouth.

During the seizure I don't know what's going on or what I'm doing, this may last for a little while afterwards until I'm completely out of it. One night I was wondering around the house "looking" for something. I kept going into my husbands bedroom and turning on the light then walking back out. After the third time I did it my husband realized that I was having a seizure and got me to sit down until I came out of it.

I had one in a Wal-Mart once when we were in line checking out. I just sat down on the floor and wouldn't move. My husband had a heck of a time getting me out of the way so other people could check out and then finally got me into the car and took me home.

Sometimes I'll grab things in the house and just start doing stupid things with them. Once I had a pillow in a pillow case and kept trying to put it over my foot like a sock. My husband tried to take it off of me but I wouldn't give it to him so he just let me keep it until I came out of the seizure. As long as whatever I've got won't hurt me, or I'll hurt it, then he'll just let me have it.

I'll almost always have a horrible headache after the seizure and I'm very tired too, I'll be very tired the next day also and sleep most of it. My dr gave me some headache pills and shots to use but neither of them do anything.

I'll just lay on the couch with a bag of ice on my forhead (heat works for some people too) with a pillow over my face to block out the light. Sometimes I'll put my headphones in and listen to music, it blocks out all the other noise but for some reason the music is ok. I end up falling asleep for a few hours after this. When I wake up the headache is usually gone but if it's not then I just do this whole thing all over again.

 

[moongal]

Hey thanks Valeried it really helps to know that I'm not alone in this. The headaches are absolutely horrible and I've tried different painkillers too but nothing seems to work. I might try that ice pack the next time. I do that "talking" thing too. Like I am communicating with people, but I really have no idea what I'm saying and would have no recollection afterwards what has gone on, I don't remember wandering around the wards in the hospital but my mother said I was very sure I wanted to be out of my bed walking around....oh dear this is quite a pickle....

 

[m1987]

For the headache, a fast re-hydration is always effective for me. So maybe have some dioralytes or similar in the house or in your bag or something to take when you come to.

I've never tried to jump out of a car, but I am generally a difficult and confusing person when I'm postictal (or so my friends tell me), so you're not alone there.

 

[moongal]

Thanks m1987, I think I tried to jump out of the car after my 2nd TC of the day, it usually takes a few to get me do as something as crazy as that it wouldn't be after the first one. ya hydration does help too actually so I might do that. I also find I can't follow conversations and don't have a clue what I'm saying from the begining of a sentence to the end.

 

[Nakamova]

Hi moongal, do you have temporal lobe epilepsy? that tends to associated with more unusual or aggressive post-seizure behavior.

Probably the best way to deal with it is to get your seizures under control (I know, easier said than done). Is your neurologist reviewing your meds? You may have developed a tolerance, or had your metabolism change in such a way that a different dose or different med may work better.

This thread might be of interest:
http://www.coping-with-epilepsy.com...-post-ictal-agression-violent-behavior-15795/

 

[moongal]

Hi Nakamova, the doc said I have juvenile myoclonic E. He is reviewing my meds and currently I am being moved on to phenytoin and they are trying to get my levels correct but I am finding the side effects just awful, but I've been told to stick with it and these side effects will pass in a few weeks. I feel like I don't have a life at present I'm just nauseas and tired all the time. I'm 29 and have to take a nap during the day. I really hope this medication works because at the moment I feel like my E has changed my personality or something I can't remember anything. My doc also said that I'm more prone to seizures around my period. Thanks you for the post

 

[Nakamova]

I was on phenytoin (Dilantin) for a few years. No mood side effects, but I couldn't stay on it because it was starting to affect my gums, and can cause bone loss too. You might bring that up with your doctors -- whether or not the Phenytoin can or should be a long-term solution.

If you're more prone to seizures due to hormonal fluctuations (which is called catamenial epilepsy), there may be progesterone-based treatments that can help. You can read about catamenial epilepsy in these threads:
http://www.coping-with-epilepsy.com/forums/tags/catamenial epilepsy.html

 

[moongal]

Thanks Nakamova, I might have to bring it up with them this is just making me so sick, I think I can do about another week on it but no more. I'm sorry for complaining so much I'm normally a much happier person it's just this is really getting to me I hope you are doing well.

 

[crappieflop]

I do weird things too...

I have adult-onset epilepsy; started in 2009 with tonic-clonic seizures, and as my epilepsy progressed, I would do really weird things after my seizures, like play with the hood-strings on my husband's hoodie, trying to wrap them around his ears, wtf? I was hospitalized last year because (they thought I was a drug overdose because of the weird things I was doing) and I don't remember a thing about it. I was walking around the house saying and doing really weird things, and it lasted for hours... it probably started around 10 pm and my husband and mom finally decided to take me to the ER @ around 3 am. By then, anyone coming into the ER was a suspected druggie or drug overdose, which is what they thought I was. Anywho they drew blood and of course it came back neg for drugs. I started having simple partial seizures really bad last fall, 30 times a day or more, mostly it was my speech that was affected, and I had "lapses" in memory i.e. going to a restaurant, having pictorial proof that I was there, but not remembering it whatsoever. Complete amnesia.

 

[Nakamova]

Hey crappieflop, are you seeing a neurologist to adjust your meds? Sounds like they need adjusting...

 

[moongal]

Ya I agree with nakamova it does sound like they need to review your meds. I know what you mean though, people have told me that I spoke to them and I've no recollection of it whatsoever. Sometimes I think it's really funny how that happens and then other times I worry that I could put myself into a dangerous situation like go out into traffic or something, thankfully that hasn't happened yet.

But yes definitely pursue them about some kind of adjustment.