20 Mins Seizures?

[Anela]

Hi :hello:

A little bit of background...

Complex partial seizure disorder (drug resistant) mostly cluster seizures.
Medication: Tegretol, Lamotrigine and Lorazepam when I have 3+ seizures and ovulation and menstrual days. (Tried Keppra, Pregabalin and Clobazam didn't work) I will be trying Zonegran soon.

The issue that I am having right now is basically sometimes my seizures are lasting 20 mins or so. Not long ago I was looking at the time just before a seizure it was 20:35 next time I saw the time again was 20:55 or so I don't remember anything in between that time. Am I having a one long seizure or could it be clusters without long enough break in between? I have seizures every month but I don't have these long ones every time. I read all about status epilepticus and I am scared.

I also thought that I am having auras which now I know are not auras but partial seizures. I get sudden rush of everything dizziness, nausea, weakness all sorts of sensations onder:

Oh and if you are on Zonegran or have been can you tell me about some of the side effects please?

 

[MichaelJO7]

I on occasion have really long seizures (a couple of hours plus sometimes) but it has been quite a while (a year plus) since I had those. I ended up in the hospital at least two times due to these, and they eventually petered out. I was given Lorazepam. I have gotten use to the long ones. The long ones can be very tiring, but I feel quite relaxed once they are done. I considered them one long seizure at the time, although my seizures do tend to cluster. It depends on the definition of cluster, I suppose. I have had probably four really prolonged seizures, or status epilepticus. All of them were over an hour.

 

[gbpackerfan]

Hi Anela and welcome,
One of my E diagnosis' is complex partial epilepsy. My seizures often turn into tonic-clonic ones. I have always had my big ones while sleeping but my ex had always called for an ambulance for anything that lasted over 5-10 minutes. I've been living and sleeping alone for the past 8 years, so I'm unaware of how long they've been lasting over the past several years. I go through periods of postictal confusion afterwards, maybe you just aren't fully conscious enough to remember to look at the time?? Just a thought. I have tried Zonisamide, generic for Zonegran. Keep in mind that everyone has different reactions to different meds and this was just my personal experience. I will never take zonisamide again. It made me very irritable and angry. It gave me horrible anxiety and panic attacks. It made me have very oily skin and caused me to have acne like a teenager again, I was 33 when I took it. It also had some weird reaction to carbonated drinks, soda and or beer, and you can't feel the carbonation in your mouth and makes it taste/feel like they're flat. I didn't realize how Z changed my mood until a couple of months into it. I hope this helps and I hope you find something that works for you. I'm currently on Trileptal and Depakote. I've been very sleepy mid-day but I added a vitamin b complex supplement which has taken away the daytime sleepiness. Keep your head up and be honest about everything with your doc when you see them. A good thing to try to do is keep a journal of what you've eaten, done each day and things that cause stress and when you have your seizures. It might help you identify triggers for your seizures or just remember things you might not have remembered unless you wrote them down. Good luck finding a med that works for you and keep your head up.
Dan

 

[Anela]

I on occasion have really long seizures (a couple of hours plus sometimes) but it has been quite a while (a year plus) since I had those. I ended up in the hospital at least two times due to these, and they eventually petered out. I was given Lorazepam. I have gotten use to the long ones. The long ones can be very tiring, but I feel quite relaxed once they are done. I considered them one long seizure at the time, although my seizures do tend to cluster. It depends on the definition of cluster, I suppose. I have had probably four really prolonged seizures, or status epilepticus. All of them were over an hour.

Oh wow over an hour sounds very tiring and scary. When I have these 20 minutes ones I am knackered afterwards. I will be seeing my neurologist next month and I will tell him about it. I am glad I wasn't imagining it.

 

[Anela]

Hi Anela and welcome,
One of my E diagnosis' is complex partial epilepsy. My seizures often turn into tonic-clonic ones. I have always had my big ones while sleeping but my ex had always called for an ambulance for anything that lasted over 5-10 minutes. I've been living and sleeping alone for the past 8 years, so I'm unaware of how long they've been lasting over the past several years. I go through periods of postictal confusion afterwards, maybe you just aren't fully conscious enough to remember to look at the time?? Just a thought. I have tried Zonisamide, generic for Zonegran. Keep in mind that everyone has different reactions to different meds and this was just my personal experience. I will never take zonisamide again. It made me very irritable and angry. It gave me horrible anxiety and panic attacks. It made me have very oily skin and caused me to have acne like a teenager again, I was 33 when I took it. It also had some weird reaction to carbonated drinks, soda and or beer, and you can't feel the carbonation in your mouth and makes it taste/feel like they're flat. I didn't realize how Z changed my mood until a couple of months into it. I hope this helps and I hope you find something that works for you. I'm currently on Trileptal and Depakote. I've been very sleepy mid-day but I added a vitamin b complex supplement which has taken away the daytime sleepiness. Keep your head up and be honest about everything with your doc when you see them. A good thing to try to do is keep a journal of what you've eaten, done each day and things that cause stress and when you have your seizures. It might help you identify triggers for your seizures or just remember things you might not have remembered unless you wrote them down. Good luck finding a med that works for you and keep your head up.
Dan

Thank you Dan

Did your seizures turn into tonic-clonic from the day you were diagnosed? My seizures don't turn into tonic-clonic and I was diagnosed with E 5 years ago, I asked my neurologist if they will and he said it's unlikely that they will if they haven't already. I think that's exactly what it might be I think I am not fully conscious to remember them. I have heard a lot of negative things about Zonegran but like you said everyone reacts differently so I am somewhat hopeful. Pregabalin did that to me made me very teary, angry and I gained weight HATED it so much came off them after 2 months. I am trying to quit fizzy drinks so maybe that won't be a bad side effect haha. Thank you for the journal idea, I already do something similar but only with the days I have seizures. I write the seizure time and date and what I was doing just before, but if I start Zonegran I am going to keep an eye on things and write them down everyday. Thank you very much.

 

[Nakamova]

Hi Anela, wecome to CWE!

I was on Zonegran for a little over 6 months. It was not a happy time. I experienced some cognitive issues and a bit of depression -- things I haven't experienced before or since. It affected my appetite, and I ended up with a very acid stomach since I wasn't eating. I ended up having a big ol' tonic-clonic seizure (about 2 weeks before I was to meet with my neuro to say I wanted to switch meds).

Before starting Zonegran (and during your time on it), make sure your neuro tests your serum bicarbonate to make sure you don't develop metabolic acidosis. There's an FDA warning that recommends this test: See http://www.fda.gov/Drugs/DrugSafety...mationforHeathcareProfessionals/ucm095251.htm
Unfortunately the warning didn't come out until after my time on Zonegran -- I think I may have been experiencing some of the early symptoms of metabolic acidosis when I had my seizure. I also recommend that you drink plenty of water while on Zonegran , especially if you find that you are eating less. Dehydration can be one of it's side effects.

As noted above everyone has a different reaction -- yours may be better. Good luck!

Best,
Nakamova

 

[gbpackerfan]

Anela,
I don't really know much about my seizures. My ex wife was the only one who ever witnessed them. I had a minor seizure that was recorded on one of my EEG's and that is where that diagnosis came from, but I had no idea that I had a seizure at the time of the EEG. I have several E diagnosis'. I usually go through extended periods of postictal confusion & amnesia. Usually the way I know that I had a seizure is being very confused when I wake up and I usually bite my tongue pretty good. I'm sorry, I wish I could be more helpful. I've had E for about 15 years and I barely received a diagnosis other than a "Seizure Disorder", earlier this year. My E is caused by brain damage from a depressed skull fracture I suffered as a child. My epilepsy makes my memory horrible, so a journal is crucial for me. I've gone through several med changes and have had different side effects from each med. it sounds like you have a doctor who is trying to take care of you. Keep your head up and I wish you the best!

 

[Anela]

Thank you Nakamova

My neurologist is planning to take me off Lamotrigine and start Zonegran slowly. I am very scared to try it. But I think I need to start something anything because things are just not improving whatsoever. I am housebound I am afraid to go out I am afraid to have a bath I don't lock the door and I only take a shower when my mum is at home. I am a bit of a freak of nature haha so they might work for me perfectly.

I am already having problems with not drinking enough water which is constantly giving me urinary tract infections and my doctor has put me on antibiotics for 6 months. She thinks because I am on Tegretol I need to drink more water. Thank you once again I really hope that it works for me.

 

[Anela]

Anela,
I don't really know much about my seizures. My ex wife was the only one who ever witnessed them. I had a minor seizure that was recorded on one of my EEG's and that is where that diagnosis came from, but I had no idea that I had a seizure at the time of the EEG. I have several E diagnosis'. I usually go through extended periods of postictal confusion & amnesia. Usually the way I know that I had a seizure is being very confused when I wake up and I usually bite my tongue pretty good. I'm sorry, I wish I could be more helpful. I've had E for about 15 years and I barely received a diagnosis other than a "Seizure Disorder", earlier this year. My E is caused by brain damage from a depressed skull fracture I suffered as a child. My epilepsy makes my memory horrible, so a journal is crucial for me. I've gone through several med changes and have had different side effects from each med. it sounds like you have a doctor who is trying to take care of you. Keep your head up and I wish you the best!

I see, thank you so much you have been helpful. Yes I have a wonderful doctor. He is trying very hard to do whatever he can he said he is finding it harder to adjust my medication and find the right one for me because I am still so young and probably might want to be a mother some day so he is trying to not cause too much damage lol. My epilepsy like yours causes me to have really bad memory loss I had a neuropsychological test to check how quickly I am forgetting things for now its somewhat okay but we will check again in few years. I tend to forget places I have been to or how to get to them, I forget films I have seen so when I watch them again I feel like I am watching a brand new film. The doctor that did my test told me to take notes and have them around so I have little sticky notes all around my room lol. On my dressing table on my wardrobe on my laptop it does help a lot.

So do the medication you are on now work for you? How many seizures do you think you have in a month?

 

[MichaelJO7]

My epilepsy like yours causes me to have really bad memory loss I had a neuropsychological test to check how quickly I am forgetting things for now its somewhat okay but we will check again in few years. I tend to forget places I have been to or how to get to them, I forget films I have seen so when I watch them again I feel like I am watching a brand new film. The doctor that did my test told me to take notes and have them around so I have little sticky notes all around my room lol. On my dressing table on my wardrobe on my laptop it does help a lot.

Same here. I have facial recognition problems. I can't recognize the words I am writing sometimes. They don't quite look right. Even people now I have known for years don't seem quite real. It is really hard to feel comfortable around people like this, knowing that I will forget so many things.

I have to have things written down. I have to read and reread things. Many things just don't register. People who don't have these issues just don't understand, even if you explain it (repeatedly) sometimes. I think they think I am making excuses. It is hard to figure out.

I am currently reading a brain textbook (with many pictures). It helps for me to use more than one sense when trying to learn something. Repetition helps. It helps to at least try to keep my brain active.

 

[gbpackerfan]

Hi Anela,
I really don't know how to answer your questions. I think that I am having more seizures than I realize. I was on Dilantin for the most of 15 years. I was not honest with my doctor about the seizures I did know that I had and several other things. I was in a lot of denial for many years about what I was going through. I did not tell friends or family members about my problems. Friends, I pushed away. Family, I avoided. My doctor, I just told him that the Dilantin was working for me.

I have had several experiences over the past few years, where I left my home in a postictal state, read some of my other posts, pretty crazy stuff. I have two wonderful kids that I need to be here for and they were my main motivation to come to terms with what is happening to me and be honest with my doctor to get the help that I need.

I have had several med changes just this year and they do not appear to be working for me. The Dilantin was causing issues with my kidneys and liver, according to blood work ordered by my Neurologist. Z was my first med that I tried after the Dilantin and the Z was horrible for me. I then tried the Trileptal, which doesn't appear to be causing me any real issues.

I have spent years of my life in depression about my illness and how to cope with the outside world. My illness also causes me incredible anxiety, the line of work that I was in for about 15 years required late nights, abrupt shift changes, traveling out of town and sleeping in hotels. I used to only have seizures in my sleep, that I know of.

Just in the past couple of months, I have had 3 seizure experiences which did not make me lose consciousness, nor did they happen when I was already asleep. One, was completely visual with a loss of control of my arms and legs after I layed down. The other two, were my right leg kicking or right arm clenching. When I told my doc, he decided to add Depakote to the mix. He says if we can get me stabilized for at least 6 months, he will take one of them out of the mix. I have recently lost my driver's license because of my E. With Trileptal and Depakote, I have not yet had any seizures.

My memory loss is basically put together when family members tell me about something I did or said, which I have no memory of. Places I've been, people I've met, movies I've watched, you name it.

I now have been diagnosed with: Complex Partial Epilepsy, Post-traumatic Epilepsy, Convulsive Generalized Seizure Disorder, Unspecified epilepsy without mention of intractable epilepsy, Sleepwalking (Somnambulism), and Parasomnia. I recently had a single night sleep study. During the sleep study, apparently I was hot and had asked the tech for a fan in the room and I have no memory of it. I am meeting with my new "Sleep Medicine" doctor next week, to go over my sleep study results.

I recently stayed a couple of nights with the ex. She told me that I had 3-4 seizures each night. She also told me that I sat on the couch eating a bag of potato chips in the middle of the night. If she hadn't witnessed all of this, I would have never guessed because I felt "normal" the next morning.

So, I am not sure if the meds are working because I think that I am having small seizures but my memory is so bad, I don't remember things from 10 minutes ago and I don't carry a journal with me all day to write everything down. The same thing can be said about how many seizures I have each day, I really don't know.

I have had bruises on my body and face when I wake up in addition to biting my tongue. I have also had bad cuts on the bottom of my feet from walking barefoot in the middle of the night. My doctor's are not sure if what I am doing is actually Postictal State or Sleepwalking. I am currently living with family because of the sleepwalking.

What are your seizures like?

 

[Anela]

Same here. I have facial recognition problems. I can't recognize the words I am writing sometimes. They don't quite look right. Even people now I have known for years don't seem quite real. It is really hard to feel comfortable around people like this, knowing that I will forget so many things.

I have to have things written down. I have to read and reread things. Many things just don't register. People who don't have these issues just don't understand, even if you explain it (repeatedly) sometimes. I think they think I am making excuses. It is hard to figure out.

I am currently reading a brain textbook (with many pictures). It helps for me to use more than one sense when trying to learn something. Repetition helps. It helps to at least try to keep my brain active.

I have the same problem with words I have to check several times if what I type makes sense. Right after seizures I can't spell properly for a while and yes repetition really helps me as well.

 

[Anela]

Hi Anela,
I really don't know how to answer your questions. I think that I am having more seizures than I realize. I was on Dilantin for the most of 15 years. I was not honest with my doctor about the seizures I did know that I had and several other things. I was in a lot of denial for many years about what I was going through. I did not tell friends or family members about my problems. Friends, I pushed away. Family, I avoided. My doctor, I just told him that the Dilantin was working for me.

I have had several experiences over the past few years, where I left my home in a postictal state, read some of my other posts, pretty crazy stuff. I have two wonderful kids that I need to be here for and they were my main motivation to come to terms with what is happening to me and be honest with my doctor to get the help that I need.

I have had several med changes just this year and they do not appear to be working for me. The Dilantin was causing issues with my kidneys and liver, according to blood work ordered by my Neurologist. Z was my first med that I tried after the Dilantin and the Z was horrible for me. I then tried the Trileptal, which doesn't appear to be causing me any real issues.

I have spent years of my life in depression about my illness and how to cope with the outside world. My illness also causes me incredible anxiety, the line of work that I was in for about 15 years required late nights, abrupt shift changes, traveling out of town and sleeping in hotels. I used to only have seizures in my sleep, that I know of.

Just in the past couple of months, I have had 3 seizure experiences which did not make me lose consciousness, nor did they happen when I was already asleep. One, was completely visual with a loss of control of my arms and legs after I layed down. The other two, were my right leg kicking or right arm clenching. When I told my doc, he decided to add Depakote to the mix. He says if we can get me stabilized for at least 6 months, he will take one of them out of the mix. I have recently lost my driver's license because of my E. With Trileptal and Depakote, I have not yet had any seizures.

My memory loss is basically put together when family members tell me about something I did or said, which I have no memory of. Places I've been, people I've met, movies I've watched, you name it.

I now have been diagnosed with: Complex Partial Epilepsy, Post-traumatic Epilepsy, Convulsive Generalized Seizure Disorder, Unspecified epilepsy without mention of intractable epilepsy, Sleepwalking (Somnambulism), and Parasomnia. I recently had a single night sleep study. During the sleep study, apparently I was hot and had asked the tech for a fan in the room and I have no memory of it. I am meeting with my new "Sleep Medicine" doctor next week, to go over my sleep study results.

I recently stayed a couple of nights with the ex. She told me that I had 3-4 seizures each night. She also told me that I sat on the couch eating a bag of potato chips in the middle of the night. If she hadn't witnessed all of this, I would have never guessed because I felt "normal" the next morning.

So, I am not sure if the meds are working because I think that I am having small seizures but my memory is so bad, I don't remember things from 10 minutes ago and I don't carry a journal with me all day to write everything down. The same thing can be said about how many seizures I have each day, I really don't know.

I have had bruises on my body and face when I wake up in addition to biting my tongue. I have also had bad cuts on the bottom of my feet from walking barefoot in the middle of the night. My doctor's are not sure if what I am doing is actually Postictal State or Sleepwalking. I am currently living with family because of the sleepwalking.

What are your seizures like?

Oh my goodness so sorry to hear that. Mine are simple and complex the way I tend to have them now is clusters so sometimes for two weeks I won't have any seizures and then suddenly 3 days in a row I will have about 15. I grind my teeth a lot, I turn my head left and right I rub my legs. My boyfriend actually recorded one for me to see it. Maybe you can get a family member to record it for you if you have one in front of them.

For my doctor the biggest issue he is having now its the amount of seizures and the fact they went from simple to complex. Tried Keppra, Pregabalin, Clobazam birth control injection Depo-Provera as hormones affect my seizures as well none of it worked. Now I am on Tegretol, Lamotrigine and Lorazepam when I have more than 3 seizures. I am not sure if I have seizures in my sleep. But sometimes I do wake up feeling like I just had one. I also feel depressed some days are really hard and I have had a few panic attacks ended up in hospital because I couldn't breath and suffer from anxiety which I was told comes with epilepsy. Insomnia is another problem. Last time I spoke to my neuro he said that people with E like mine drug resistant suffer from fear, anxiety and depression.

At the moment I am not working because of all these things put together I couldn't hold a job I am home most days which is obviously not helping either.

 

[Nakamova]

Hang in there -- here's hoping the Zonegran helps and you can feel better.

Since hormones affect your seizures, maybe an "anti-estrogenic" diet would help a little. It's basically avoiding foods that tend to increase estrogen in the body and eating plenty of the foods that tend to decrease levels. You can read about some of the anti-estrogenic foods here: http://www.thedailyfastingblog.com/top-10-anti-estrogenic-foods-why-you-should-know-about-them/ And estrogenic foods to avoid here: http://www.livestrong.com/article/70189-estrogenic-foods-avoid/ If you decide to make any dietary changes, it's always a good idea to check with your doc first.

 

[Anela]

Hang in there -- here's hoping the Zonegran helps and you can feel better.

Since hormones affect your seizures, maybe an "anti-estrogenic" diet would help a little. It's basically avoiding foods that tend to increase estrogen in the body and eating plenty of the foods that tend to decrease levels. You can read about some of the anti-estrogenic foods here: http://www.thedailyfastingblog.com/top-10-anti-estrogenic-foods-why-you-should-know-about-them/ And estrogenic foods to avoid here: http://www.livestrong.com/article/70189-estrogenic-foods-avoid/ If you decide to make any dietary changes, it's always a good idea to check with your doc first.

Nakamova thank you so much for the links. I am a bit down at the moment had 3 seizures. I think its because I got really emotional. I will talk to my neurologist about the changes. I eat most of these foods especially mushrooms, onions, garlic, lemons although I was told by my neuro that I can't have grapefruit something to do with Tegretol. I have stopped eating meat it'll be 4 months soon which I need to tell him. But thank you very much very kind of you

 

[masterjen]

I have stopped eating meat it'll be 4 months soon which I need to tell him. But thank you very much very kind of you

Just curious why you gave up meat - was it a dietary choice or medical requirement? Make sure you are getting enough protein and iron via other food sources. I know when I do not have adequate protein I am apt to feel weak and lack energy, and while lack of protein does not specifically trigger a seizure for me I will have stronger post-seizure after effects if my protein intake has been too low. I was only able to establish this connection by keeping a journal; this might help you as well.

 

[AlohaBird]

What Jen said plus lack of B12 (which is found in meat) can cause and/or worsen seizures.

 

[Anela]

Just curious why you gave up meat - was it a dietary choice or medical requirement? Make sure you are getting enough protein and iron via other food sources. I know when I do not have adequate protein I am apt to feel weak and lack energy, and while lack of protein does not specifically trigger a seizure for me I will have stronger post-seizure after effects if my protein intake has been too low. I was only able to establish this connection by keeping a journal; this might help you as well.

I was never really a big meat eater to begin with. I don't like chicken and the meat I did like is the bad burger type lol. I do eat high protein vegetables and anything I can to replace meat. I bought a brand new journal to start

 

[Anela]

What Jen said plus lack of B12 (which is found in meat) can cause and/or worsen seizures.

Whenever I have a blood test they check B12 and they haven't said that its low. Although I am going to ask for blood test in October as it has been a while to make sure its not low.

 

[gbpackerfan]

Hi Anela,
I am not a huge meat eater either. Rice and beans, eggs and nuts are some good protein sources also. My blood work has been done every month for the past year and a half. None of my B vitamin levels have come up low, nor have my D vitamin levels. With that being said, there are a couple things to remember. Some of the meds that you're taking might be affecting this depending on when you take your meds, if you're hydrating and/ or eating before or after and if your day to day routine is habitual or random. Sleep habits are a big contributing factor as well. Even though my blood work shows normal, my new sleep medicine doc wants to add 5k units of vitamin D3 daily as well as a vitamin b complex with electrolytes. She was very specific about when to take my vitamins as well because I take my meds twice a day. She said to take my vitamins in the middle of my med schedule with 2 full glasses of water.