Does anyone have experiences like this?

[kesaiserris]

I lose time not just a few minutes or seconds as would be the duration of a normal seizures but huge chunks. It doesn't happen often but obviously its very disruptive

Examples
I talked once for 5 hours strait, repetitious nonsense mostly. I did not respond to questions or stimuli and right after I fell asleep. I have absolutely no memory and when my husband told me it sounded so ridiculous I thought he was making it up. At that time I was undiagnosed so he just thought I was tired.
Sometimes I will be vacuuming the floor the same spot for hours and my husband will have to physically stop me, in my mind it just seems like I was doing it for a few minutes.
As a teenager my cousin was spending the summer so we were staying up most nights and after a while she noticed that I was really not with it, I remember being in this fog and my body and mouth just would not do anything I wanted. I figured I had to go to sleep and I slept for 48 hours strait!!! Its like my body functions stopped unless someone was taking me to the bathroom or feeding me because I don't remember a thing.

I do really badly without sleep. I have to have a sleep schedule and keep it, going out in the evenings with friends is so embarrassing because if I am not seizing I am falling asleep!

 

[petero]

I've never had an experience like that that I know of certainly.
I've had a lot of filaments of memory that remind me of a period I was having cluster seizures I guess, wherein I had periods of time I figure I must have had low levels of consciousness where I must have been talking, and these talking periods (if that's what they were, or dreams?) continue to creep into my recollection, brought about by strange triggers, people, places, things, events, who knows. My mom was there with me at the time, now I think my dad was there for a period of time also, but neither confirm what I have as recollections. Lately I've come to suspect it may be some sort of PTSD mental absorption thing, where events enter my recollection as my mind is able to cope with them- slowly, apparently, because this time period was two years ago.

 

[petero]

I've definitely "lost time" though during tonic-clonics, if you count sleeping for hours and having no concept of time...
nothing exactly like what you're talking about though.
in my understanding, seizures themselves wouldn't last for five hours, and if they do that's a definite medical emergency. Max they would last no more than a minute or so.

 

[Cint]

I've definitely "lost time" though during tonic-clonics, if you count sleeping for hours and having no concept of time...
nothing exactly like what you're talking about though.
in my understanding, seizures themselves wouldn't last for five hours, and if they do that's a definite medical emergency. Max they would last no more than a minute or so.

When a seizure lasts for more than 5 minutes, it is called status and it is absolutely an emergency. I've gone status twice and had to be rushed to the ER. Kesaiserris, what you're talking about sounds more like a Dissociative Disorder. Have you seen a therapist?

 

[kesaiserris]

I have wondered if might be some type of Dissociative Disorder but there is a lot that doesn't fit, still I have an appointment with a therapist encase. I have Epilepsy perhaps in addition to this, when I mentioned these episodes to my Neurologist they never suggested anything, I may just have an exaggerated postictal phase, because I am just really, groggy, foggy and out of it, if it would be another personality she is a zombie but you know some people sleep maybe I just keep forcing myself to stay awake but I am totally ineffective. I do tend to have a lot of seizures back to back to back. I was actually in the emergency room recently for that. I have had seizures since Saturday evening morning through night probably every 10 to 20 minutes even into the night when I sleep. Meds aren't controlling them.

 

[Sandie]

I think you should investigate this further. I have experienced this but I was suffering from severe depression and I am not suggesting that you have it but it may be something other than epilepsy. I found myself in the middle of a busy intersection and didn't know how I got there so I urge you to find out what is going on.This was a long time ago. I had a nervous breakdown and was under psychiatric care for 2 years but thankfully, my life is wonderful now I am with my soulmate. It may be absolutely nothing to worry about but it doesn't hurt to check it out.

 

[kesaiserris]

This events don't only occur in times of stress or Depression in several cases I was feeling quite okay emotionally. I do have childhood trauma but I was never the repressing sort

 

[Sandie]

It may well be E. related although I can't really say. Maybe someone else here can shed some light for you. I have still so much to learn about epilepsy and am still struggling to come to terms with my own diagnosis. I do know that it can be annoying and embarrassing and I don't envy you having this problem. It is annoying enough getting absence seizures so I hope you can get it sorted out soon. Take care.

 

[Maisy]

remember a post about this a few months back as above I've deffo lost tine after t-c but usually partials where I lose time lost time for 24 hours once but also As above I had severe depression still have so im thinking maybe there just slight partials hmmm

 

[elis]

I have epilepsy and periodically get grand mal and petit mal seizures and have since I was 12 (now 50) but about 4 years ago I was diagnosed with Cushings disease which in my case were 2 tumours on my Pituitary gland. This caused a lot of problems but one of the problems was that I would lose time. I would end up places in my house and I couldn't figure out how I got there or I would start out driving somewhere and end up somewhere else. The doctors wanted to put this down to me being depressed but there was nothing situational in my life to make me depressed at the time and my GP and my family kept pushing the issue and demanding more tests. That was really fortunate as Cushings disease is fatal if it is not caught. So be careful with this kind of thing. On the other hand, after a seizure I am totally out of it. Even the next day I have done things (like write a final exam for a course) and have had no memory of doing it or ride my bike home after the seizure. I think that our brain when it is so traumatized goes into automatic mode and just does what it has to do.

 

[kesaiserris]

I have epilepsy and periodically get grand mal and petit mal seizures and have since I was 12 (now 50) but about 4 years ago I was diagnosed with Cushings disease which in my case were 2 tumours on my Pituitary gland. This caused a lot of problems but one of the problems was that I would lose time. I would end up places in my house and I couldn't figure out how I got there or I would start out driving somewhere and end up somewhere else. The doctors wanted to put this down to me being depressed but there was nothing situational in my life to make me depressed at the time and my GP and my family kept pushing the issue and demanding more tests. That was really fortunate as Cushings disease is fatal if it is not caught. So be careful with this kind of thing. On the other hand, after a seizure I am totally out of it. Even the next day I have done things (like write a final exam for a course) and have had no memory of doing it or ride my bike home after the seizure. I think that our brain when it is so traumatized goes into automatic mode and just does what it has to do.

Thanks so much for your concern! I am familiar with Cushings Disease I actually looked into for my husband's mother. I hadn't considered I might have it. I will do a little research as much of what you said is really ringing a bell. Did you have any of the appearance elements indicative of the condition? I do think automatic mode has something to do with with it because I do suffer extreme fatigue at times (I have seizures at night so it disrupts sleep). Doctors are quick to claim everything is Depression but Depression is a common symptom for a lot of physical conditions so I always wondered why they never make sure a person's health is good before writing them off. I am glad you were able to find a doctor who kept pushing for you. I started out with a good Neurologist but he wanted me to have an Epilepsy Specialist and I've been very frustrated with her performance so far.

 

[elis]

Yes, I had the appearance elements of the disease. Since I had the brain surgery they have disappeared - thank goodness. I gained a lot of weight and had the typical round (moon face) - and my hair became curly. The problem is that with a lot of epilepsy drugs - especially the ones that I am on one of the side effects is weight gain so the specialists just put it down to that. I also developed diabetes and ashthma and high blood pressure. All of this happened at the very end of when they finally diagnosed me. The endochronlogist said that I probably had the disease for about 5 or 6 years by then. I think the key thing to remember is that we can have epilepsy and also have another serious illness. When I talked to my neurologist to complain to him he was upset at missing something so obvious and really serious but reminded me that they specialize and because of that they tend not to see outside of their own specialties. So the neurologist who my GP sent me to for MS saw me as a fake because I didn't have the symptoms of MS, my neurologist saw my weight gain as all related to the epilepsy drugs and then the diabetes as related to the weight gain and the fatique as am emotional thing well because I was fat and a woman. Sometimes the patient has to think outside the box - unfortunately.

 

[kesaiserris]

Yes, I had the appearance elements of the disease. Since I had the brain surgery they have disappeared - thank goodness. I gained a lot of weight and had the typical round (moon face) - and my hair became curly. The problem is that with a lot of epilepsy drugs - especially the ones that I am on one of the side effects is weight gain so the specialists just put it down to that. I also developed diabetes and ashthma and high blood pressure. All of this happened at the very end of when they finally diagnosed me. The endochronlogist said that I probably had the disease for about 5 or 6 years by then. I think the key thing to remember is that we can have epilepsy and also have another serious illness. When I talked to my neurologist to complain to him he was upset at missing something so obvious and really serious but reminded me that they specialize and because of that they tend not to see outside of their own specialties. So the neurologist who my GP sent me to for MS saw me as a fake because I didn't have the symptoms of MS, my neurologist saw my weight gain as all related to the epilepsy drugs and then the diabetes as related to the weight gain and the fatique as am emotional thing well because I was fat and a woman. Sometimes the patient has to think outside the box - unfortunately.

I have curly hair naturally and it is a little coarse, I have kyphosis but no fatty deposits on the back and my clavicles are bony, my face does flush red for no apparent reason but this a recent thing, I do have hip pain frequently, my shoulders are weak weak, I have not gained weight though I didn't gain weight on the Epilepsy meds either I am pretty thin and eat quite a lot but I exercise a lot. I do have super dry skin especially the calves (also dry eyes and dry mouth I was tested for Sjögrens) and I do bruise easily. I did recently have hypercalcemia actually and it caused such severe fatigue I was literally falling asleep standing up. I think my calcium is normal again not 100% sure. Despite no weight gain and a long history of low blood pressure my blood pressure was quite high last time I had it checked which is very strange.

 

[elis]

There is a really easy way to test for Cushings - get them to do a blood test for cortisol. If your cortisol is through the roof then there is a really good chance that your endochrine system is messed up. It is a simple blood test and can easily rule out this really deadly disease and put your mind at rest.

 

[kirsten]

I used to go into status a lot and my neuro told me that the five minute rule only applies to tonic clonics. For other types of seizures, there are different 'danger periods' that signal status.

 

[kesaiserris]

Do you happen to know the times?

 

[kirsten]

I don't, I'm afraid. I do remember that partial seizures had a far longer time frame. You should be able to find the times through Google.