seizures when i sleep, i never knew until i was told

[nancym45]

can anyone identify with this?
I was told twice is had a seizure in my sleep,now im paying attention-finally! I see my dr on Wednesday morning and not sure what the frig he can do ??I work fulltime, i have a mortgage and a brand new car...I cant go down! I'm scared and worried about everything..will my kids get this ??HELP!

[huskymom]

Hi Nancy

First things first...breath! I know it is stressful to be flung into a situation that you never saw coming, but try to relax. I have the same thing. Almost all of my seizures happen in my sleep. I do the occasional absence seizure, but mostly at night. (kind of like the movie, Alien, "The come out at night, mostly"). I didn't know I was having them either. I would just wake up feeling terrible, and unable to make sense. Like my entire brain was scrambled. When I had my first EEG was when I found out.

I lost my drivers license for 2 weeks right off the bat. We had to find the right the right combination of medications. Then whenever it changes, same thing again. I have been lucky, those are the only times that I have not been able to drive. On seizure days, I don't drive because I am not capable, and really, where am I going to go? I feel terrible.

Just try to relax. You don't have to lose your job or car. Just be patient and see what happens. I wish you the best. Let us know how you are.

[Nakamova]

Hi nancym45, welcome to CWE!

It's normal to be scared and worried with a new diagnosis, but as huskymom says, it will be easier if you can take a deep breath, and make a plan on how to tackle this. Will you be seeing your regular doc on Wednesday or a neurologist? Either way, write down all the questions you have, and write down the answers you get too. If there's anything that's unclear, be persistent about getting it explained. If you are seeing a neurologist, you will discuss treatment options and medications. It may all feel overwhelming and confusing, but that's what the doc is for -- and that's what CWE is for too!

Aside from medications, whatever you can do to be proactive about your general health will be helpful for your epilepsy too. There's great info here: Proactive Prescription for Epilepsy and also in the book "Epilepsy: A New Approach; What Medicine Can Do; What You Can Do for Yourself" (available on Amazon and elsewhere.)

Let us know how tomorrow's appointment goes.

Best,
Nakamova

[Foxy]

My first seizure was in about 2 years ago. I had a tonic clonic seizure while sleeping. My husband witness my 1min long seizure and 30min catatonic state. I woke up to an paramedic above my bed. WTF. I was rushed to hospital where they ran a bunch of tests. Next stop was the Neurologist who ordered a sleep deprived EEG. During the EEG I was having abnormal waves (a partial seizure) in my left frontal lobe.

So it sucks. yeah. Couldn't drive, couldn't drink, couldn't have sex (tegretol stuffed with my contraceptive). What was the point in living.

Here was the positive. The seizure I had was a full on fit. Before then I was just fine. wrong!! I had been having partial seizures (i call them the fuzzies) probably all my life and at least since I was a teenager. The thing was until I took tegretol I had no idea that epilepsy was the reason I was having the fuzzies and felt mentally exhasted all the time. Yey I wasn't just spaced out, my sudden clusters drops in IQ weren't normal. When I started taking medication all of that stuff went away.

Do some research on partial & complex seizures (they normally go along with tonic clonic/generalised seizures). You might find that there is a lot more reasons to start taking medication then you realise.

I do get it. It sucks not to be normal and not to be healthy and to have to deal with something you never had to before, but you'll get through it. It might not be easy, but it will be worth it

[nancym45]

I do have a neuroligist ,but she deals with my MS ;which i dont have a problem with often, but now THIS which i was first told about 4 yrs ago, but I stupidly ignored as wicked dreaming!Tomorrow i see my regular MD @ 0:850...i only know of two times ,as i dont have partners much, what a surprise for them , eh!!!!? I think "sweet" as i am just starting to live, my kids are near grown and i am so settled in my life and starting to travel more, plus renoing and flipping houses for fun!!My BF understands ,witnessed and said he'd always be there ;his bro has epilepsy so he comes w/expertise and experience..Im so happy Im sleeping and it isnt affecting me too much;except for waking up tired and dopey!!!!!!I am also a social worker and manage a grp home for three men w/developmental disabilities, they all have epilepsy too,what a coincidence , omfg,lol!!!

[nancym45]

i just researched MS and epilepsy and surprise they are linked,man!! ill phone my neurologist tomorrow and may just take a medical day from work!!

[maddiesmom]

I have a question about the partial seizures you mention. You said you called them the fuzzies and then sometimes your head felt scrambled -- were these noticeable to anyone? I thought the only seizures that weren't visible were absent but can partial seizures just be when someone seems a little out of it for a minute?

[Meetz1064]

clarification--there are more than one type of seizure, obviously. Absence seizure is a general term that a lot of doctors use, but it does a good job of explaining how IN GENERAL a "smaller" seizure works--the E patient becomes "absent" to others around them. They may seem to be day dreaming, etc.

Then again, there are other seizures such as atonic, myoclonic, tonic clonic and many more........many, many more.

DON'T let Erun you down...you're the one in charge. Knowledge is power here.

And yes, I, too, have nocturnal seizures. Four different kinds. And I live a perfectly normal life. I watch my diet, exercise and sleep on a regular cycle.

Just don't stress too much, stress is a trigger as well. There are a number of ways to control E....so talk to your doctor, and work out what's best for you.

We'll be here for you, no matter what though.

Take care!

Meetz

[nancym45]

Thanks for all your information! I saw my md today and have been referred on to my neurologist, an mri and a ekg..this will show evidence if it were a seizure and ill lose my license for a year,omg I just bought a new car!!!how does e.i work , hoping my job will wait for me too, ive been there for 5 yrs and I am a supervisor!! must they find me something that'll fit my current situation and offer the same pay!!! ??I pray , please god some good will come out of this , hoping cause i am really very scared right now. Im also in the midst of a mortgage app as my house sold ,hopefully the outcome will wait until I am resettled,reapproved and all the money has transferred!!!

[iloveshelties]

My first suspicion that I may have Eiplepsy was when I thought I had a seizure in my sleep. I slept through my alarm, and my family came upstairs to see why I didn't come downstairs to get ready for work. When they came up to my room and tried to wake me, I had blood all over my shirt, and was very difficult to awaken. When they DID awaken me, I was horribly confused. ( Seizure probably JUST happened minutes before is MY guess) Hubby had been awake for over an hour and downstairs so he didn't see anything unusual while in bed.The blood on my shirt ws from biting my tongue so badly. I also pulled my neck muscles so badly I wound up in physycal therapy for the next 6 weeks. This was all so new to me...didn't know WHY this happened...or HOW this happened, though I had my suspicions! I was just in denial...until that 2nd seizure came along and the whole family saw it and then there was NO denying it! My 3rd seizure was ALSO in my sleep too...so, 2 out of 3 of my seizures so far have been in my sleep.This time, I was alone, and woke up with blood on my shirt again, but I was so scared because I was home alone and so confused and didn't know what was going on. Luckily, I didn' thave to be at work or anything, just a day off, but still really scared. Once I realized what happened, I cried and called my husband. I don' tlike being alone when this happens!!

[Foxy]

Hey Nancy,

Glad to here that you are seeing your neurologist. MRI and EKG are for your brain and heart i.e. to test if you have any brain damage or heart problems. If they don't find anything here they will do an EEG.

They should do an sleep deprived EEG as you are having your seizures in your sleep. So therefore they are most probably caused by lack of proper sleep. Just remember an EEG will show definately that you are having a seizure but can't rule out that you don't have seizures.

As for the driving thing it can be cut short if they know your E is controlled by meds

Hope this helps

Hey Maddie's Mum
I would send you some links but I can't so I will paste some info here instead.

Partial seizures (also called focal seizures and localized seizures) are seizures which affect only a part of the brain at onset. A simple partial seizure can often be a precursor to a larger seizure such as a complex partial seizure, or a tonic-clonic seizure. When this is the case, the simple partial seizure is usually called an aura.

I have a focal abnormality of the left frontal lobe (this is where language and higher thinking etc occurs). But the focal seizure can be in any part of the brain. My partials would come in clusters during the day. Around 4-5 days per week.

It was quite frustrating the days I needed to interact or focus (like with exams) when I was having a bad E day. I think a lot of people just thought I was a bit stupid or a bad communicator, they would just give up and stop listening. I always had good grades at school, but had off days. My report cards read, "could do better if she tried". Haha People aren't really as observant as they should be or they chalk it up to something else. I would often try to hide my partials. I would just stop talking or go do something else.

It was amazing what struggles you can get away with. I always knew there was something wrong (I didn't know it was epilepsy til they disappeared once on medication) but how do you explain "oh I just feel a bit dumb today" no one really gives you the credit.


Neways here is some more info for you

TYPES OF SEIZURES

Primary generalized seizures
Primary generalized seizures begin with a widespread electrical discharge that involves both sides of the brain at once. Hereditary factors are important in many of these seizures.

Partial seizures
Partial seizures begin with an electrical discharge in one limited area of the brain. Some are related to head injury, brain infection, stroke, or tumor, but in most cases the cause is unknown.

One question that is used to further classify partial seizures is whether consciousness (the ability to respond and remember) is "impaired" or "preserved." The difference may seem obvious, but really there are many degrees of impairment or preservation of consciousness.

Primary Generalized Seizures
Absence seizures
Atypical absence seizures
Myoclonic seizures
Atonic seizures
Tonic seizures
Clonic seizures
Tonic-clonic seizures

Partial Seizures
Simple partial seizures
Complex partial seizures
Secondarily generalized seizures

[maddiesmom]

Thanks for this. My dilemma, and I've posted this on other threads, is that I've read WAY too many first person accounts of kids going on anti-epileptic drugs for one type of seizure and then developing another kind of seizure, or then going on two and then three meds, with no relief. I hate, hate that my daughter may be having these off days and off moments, but I also hate the idea of making it worse and having her continue to have seizures AND med side effects. I wish I had read as many first person accounts of people going on a med and having it work. God, I wish I had a crystal ball. For now, I'm trying diet, sleep and supplements. We may get to the med point but anything people can tell me to convince me they are not as potentially damaging as they seem to me...I'm all ears.

[John Sturgis]

I understand exactly what your saying. I have had nocturnal seizures all my life. I am 63 yrs old. When I was 40 they told me I was having seizures in my sleep. I had a young family, house, car, etc. I was scared about what would happen to my wife, sons & my life. I retired at a very young age & started seeing a neurologist who understood seizures & would listen to me. My wife & I downsized our lifestyle but increased the love of our sons. She started working & we lived on, staying together & understanding. With the proper meds, diet, stress control & sleep my life is happy now. It is a day-to-day type of problem solving & I still owe a mortgage, have a car payment & other bills. Try not to worry, Maddiesmom, on a long term basis. Think about what you have & love right now. When you first find you have epilepsy it equals the color RED in your mind. As you continue your life the color will turn to YELLOW then BLUE then GREEN. Think now & good luck, I am always here if you need me, John S

[nancym45]

Thank you John ...sounds like you were exactly where i am now! Holy, I dont want to lose what i have , my career and extreme independence....
and yes , i have sleep problems , always have and keep a btl of 'Melatonin 'by my bedside...great possibly caused by lack of sleep -i guess its time to take care of me and get back to sleep @this time of 0530..

[John Sturgis]

Good Morning, Your welcome. I found that I always feared going to bed because I didn't know if that was going to be the night I had a seizure. Remember the key to living with epilepsy is different for ever individual. It helped me to eliminate eating chinese foods & most msg/aspartme type products & to make sure whatever I ate was not too chemically enhanced or treated. On occasion, maybe once a week I will take 1 antidepressant pill (tranxene) to relax me when I start getting ahead of myself. On meds, I found that lyrica helped me dramatically. It is an anti-epileptic drug that also will help you relax after you take it & fall asleep. Lastly, get yourself in a day by day routine, even on days that you have had a seizure the sleep period before. You seem to be pretty intelligent so this may be info you already have heard but I thought I would list my personal general keys. Keep me posted, John S.

[Loopy Lou]

Hey Nancy, I just wanted to add some input on your job, with my experience. I do the same job as you, working with four disabled adults.

My bosses decided that I shouldn't work on my own or support the individuals out in the community on my own. I couldn't push a wheelchair or use a hoist on my own. I'm not going to lie, this had a big impact on my job as I could no longer do what I was employed for and I feel like I have to be babysat when I'm on shift. The important thing to remember is that THEY CANNOT FIRE YOU or terminate a work contract/employment for health reasons.

[nancym45]

I will do my best to cope with this ,heres hoping ....Im not ready for retirement, not yet! I want to do it on my own terms and not have to leave my work..coincidentally enough I am an R.P , i specialize in a field to work w/ppl w/disabilities ..my 3 main clients have epilepsy(one of their diagnosis) ..wow , this is a learning experience for me :S

[nancym45]

ok , i see the hospital for an eeg on tues the 23rd@ 1130...,no special instructions were given ,just go thro admitting and no hair product allowed..hmmm what i read so far ,as prep has been no caffeine and go as sleepless as you can ? how accurate will this be ? I have no choice but to reschedule until my holidays begin on the 2nd, what a pushy pushy booking clerk..

[Loopy Lou]

Well, out of all the people I've worked with (our company has 6 houses in Blackpool and I've worked in 5 of them) I'd say that at least 50% have epilepsy. I was very strict with one member of staff once when an autistic girl "wouldn't do a thing she was told". Turned out shed had a tonic clonic the night before and getting shouted at by this member of staff was upsetting her. All she wanted to do was sleep and the staff member kept shaking her to wake her up, and calling her lazy.

I asked the girl to come and sit with me to watch a movie and she promptly fell asleep leaning against me. And this other member of staff told me that she was being difficult on purpose.

I find that in my job at least I am someone who knows how these guys feel after a seizure when they can't tell the staff themselves.

[maddiesmom]

ugh. that is so sad...and depressing. So these group homes are full of people who have epilepsy? Are they disabled from the epilepsy? And the staff has no idea of the side effects. this breaks my heart.