Hoping for help on signs and indications

[Leea9]

Hi,

My girlfriend is 24/7 care taker for her brother. He has epilepsy and is intellectually challenged. He has the wherewithal to mostly take care of his daily needs. He has a seizure every couple of months. Years ago they used to be multiple times per day. His medication (7 times a day) has reduced it to the current level however he sleeps 12-14 hours a day. When he has a seizure he just goes unconscious. He has been injured a number of times from the resulting fall. For him lack of sleep and stress and excitement seem to bring them on but not always.

The first thing I want to ask about is I understand that many people can feel a seizure coming on. He does not seem to. What do you feel or what are the signs? His sister can sometimes tell they are coming on. He talks to himself a lot and when that changes she is careful and will ask him to sit down. That way she can support him from injury. There are one or two other very subtle clues she can use but I can’t detect them. Is there something we can teach him to look for so he can tell he is going to have one so he can make himself safer? What kind of indicators do other people get?

Thanks
Lee

 

[Fedup]

Leea9

Welcome to C.W.E. you will find many good people here. Sounds like your girlfriend is very good to her brother in taking care of him and knows him very well to be able to pick up on such subtle things. Some people can tell when a seizure might be going to occur or maybe when one is going to happen, the main reason this is, and do not take this up the wrong way, we have epilepsy and from living with it there are different signs we can pick up on which can help us. I think you are trying to describing what sounds like a Tonic Clonic seizure, I cannot tell you any signs for when a seizure is approaching simply because I do not get a warning but I do have an idea when one will occur because I am aware of the frequency of my seizures.

Everybody is so different when it comes to seizures.

 

[Leea9]

Thanks for the reply
I had not heard the term Tonic Clonic seizure. I googled it and he does not have the stiff muscles or jerky motions I see described.

You said you don't get a warning. Maybe he doesn't either, he can't put the thoughts together to tell us. But if you ask him a question he will answer it and maybe we can find out if he does. I thought some people did get warnings. I thought he might because his sister can some times tell. So I was hoping for suggestions of things maybe to look for. My idea is to get him to sit down when they are coming on to avoid injuries.

 

[Fedup]

Leea9

That is I that does not get any signs, not everybody else, just me, I cannot speak for others because epilepsy affects everybody differently, So let others answer your question as well. Any idea what kind of seizures he has, I should say that what you see is what happens to one person, it affects everybody differently, some the same. But do not take that as what a Tonic Clonic is only the basis for one.

 

[Leea9]

Fedup,

I am hoping for just that, a variety of replies with suggestions. Thanks for you input.

Lee

 

[Matthew74]

Some people get a warning "aura", some don't. The aura can be all sorts of things. Common ones are feeling nauseous, fuzzy/tingly sensations, seeing colors, déjà vu, or hearing sounds. Sometimes you just feel funny. Everyone is different depending on what part of the brain is affected. The so called "aura" is actually the beginning of a seizure, or a very small seizure. However, not everyone gets them. Some people just seize all at once. Even if people around the person can tell when it's starting, the person seizing might not realize it because they are already having a seizure. They might start doing something, or stop doing something, and not be aware of it..

If you tell him what you see before he seizes, or ask him to pay attention when it happens he might learn. Even then, he might feel what is happening when it occurrs, but not remember later. Seizures often cause short term amnesia. They might forget everything that happened a few minutes before the observable seizure.

 

[BIGMAN131307]

There are many kinds of seizures. Some come with or without warnings.

Here are a few sites about the many possible warnings signs of seizure activity.

The first step in being prepared is to recognize warning signs of possible seizures.

http://www.epilepsy.com/get-help/ma...izures-and-emergencies/warning-signs-seizures

How Can I Prevent Epilepsy?
In someone with epilepsy, certain triggers can lead to a seizure. Identify and watch for particular behaviors, environments, or physical and emotional signs that precede attacks. It's not uncommon, for example, to feel annoyed or elated several hours prior to a grand mal seizure, and immediately before the attack.

http://www.webmd.com/epilepsy/understanding-epilepsy-prevention

http://www.healthtalk.org/young-peo...sy/early-symptoms-epilepsy-and-first-seizures

http://www.aboutkidshealth.ca/en/re...psy/pages/signs-and-symptoms-of-seizures.aspx

http://www.nhs.uk/Conditions/Epilepsy/Pages/Symptoms.aspx

http://www.medicinenet.com/seizures_symptoms_and_types/article.htm

 

[Nakamova]

Hi Leea9, welcome to CWE!

It sounds like your gf's brother may have "atonic (or "drop") seizures? (No loss of consciousness or convulsions, just a sudden fall). Or perhaps he gets "Complex Partials" where there is some awareness, but impaired? He may or may not be someone who gets a warning beforehand. If he does get a warning, it usually takes the form of what's called a partial seizure. Partial seizures only involve a part of the brain, so the person is fully or conscious or partly conscious while they are occurring.

Simple partial seizures can take the form of a wide variety of sensations -- perhaps a phantom smell, a sense of deja vu, optical illusions, odd feelings of anxiety or a "pit of the stomach" feeling, etc. You can read more about them here: http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures

If he experiences anything like that, and then not much later has the more dramatic seizure, then those could be considered warning signs or "auras".

Or he might experience "complex partial" seizures. (see http://www.epilepsy.com/learn/types-seizures/complex-partial-seizures). Those can feature impaired awareness, almost as if the person is sleepwalking or sleeptalking. Sometimes the person starts making "automatic" motions like picking at their clothes, or smacking their lips. They might talk but not make any sense. They might seem distracted or confused. So perhaps when the things he is saying or doing change in odd ways they may indicate that a complex seizure is happening or starting to happen.

In the ideal scenario, his seizures might be prevented from occurring in the first place. You mentioned fatigue or stress as his triggers -- those are probably the Top 2 on the list. Sometimes triggers can be more subtle, or there can be a delay between the trigger and the seizure. If you and your girlfriend are able to keep a "seizure diary" for her brother, you may notice patterns or other triggers that are playing a role. They can be anything from fatigue, to dietary stresses (allergies, low blood sugar, food sensitivities), or metabolic issues (dehdyration, electrolyte imbalance), to general health stressors (infection/illness/injury), to environmental features (flashing lights, certain music), and/or psychological stressors (anxiety, emotional extremes). Everyone is different -- and you might to be able to pinpoint all of his particular triggers -- but if you can, then there's a chance you can help him avoid the seizures that might otherwise ensue.

Best,
Nakamova

 

[Leea9]

Thanks everyone. I think I would have to call them Atonic plus extra. He seems to lose consciousness and has short term amnesia. I get the feeling the symptoms may be too complicated for him to grasp and be aware of. He spends a lot of time talking to himself and oblivious to the world around him. When he does that he talks in his own language. If he is injured it may take him a while to point that out and ask for help. So all in all I am getting the thought this may not be feasible. I think he may not have the awareness. Maybe if it were just one symptom, but this sounds too complex. His sister is good at helping him avoid triggers but I don't think he is aware of consequence of his actions especially since the result may be days later.

I am new to this but she has been helping him for decades. The seizures started after he was an adult. Since he has a hard time explaining how he feels his medication was just increased until the seizures got less frequent. The doctor just goes by results. She does keep a diary of when they happen. One of his meds gives him OCD so he is real good about taking his medication. Except once in a while he may lose one because playing with them is part of the process.

thanks
Lee

 

[Nakamova]

Don't know if this is an option for your gf's brother, but sometime a companion dog can be trained to sense when a seizure has occurred, and to stay by the person's side until they can get help.

 

[Leea9]

I know about companions dogs and did suggest one. He does not want a dog and so this is not an option. He won't do anything he doesn't want to.
Lee

 

[valeriedl]

Sometimes I'll have a simple partial seizure, aura, before I have a complex partial but most of the time I don't.

What you might feel during a simple partial is very hard to describe to someone who doesn't have epilepsy. Many times during a simple partial my lips might tingle, I'll see things, be confused about what's going on, know what I'm trying to say but have problems saying it and many other things. Everyone is different when it comes to this though.

After a complex partial I don't know I had it. Someone has to see it happen to know it did. Sometimes I won't remember things that happened a few minutes, a few hours and even a few days before it. My memory in general is very bad too.

I've been with my husband for 12 years since I've had epilepsy. There are times that he seems to know that I'm going to have a seizure. It could be a few minutes to a few hours before I have it. He says I have this 'look' and I don't know what he means by that. I think the only reason he can tell is because he's seen me have so many.

Fatigue and stress are two of my major seizure triggers.

 

[Blonde Angel]

Hi Leea9
I'm a Mother and main carer to a child with ASD, Epilepsy and has a moderate-severe diagnosis of intellectual impairment.

The question you ask is not always going to be straight forward unfortunately.
My girl is a nonverbal communicator, she uses some facial expressions and gestures to get her message across, however, she relies HEAVILY on others to interpret these signs.

I keep a record of her seizures and this provides me with some guide as to when, type of seizure, description , but not always the why. The challenge is there is no warning sometimes.
However, in saying that there is some cues very little at times that all is not what it seems, this is where it involves behaviour.
eg my girl loves her food but one time she refused a treat and went to sit down on her sofa and a few seconds later she had a big seizure. She obviously felt not right and she did the right thing by seating herself on the sofa.
But there has been challenges and scares in the shower, spa, while eating food and in transit in the car no warning at times.

A person with intellectual disability verbal or not can learn but it does take patience and longer time to teach.
Its great your GR Brother is verbal, one thing I can suggest is with Speech therapy support to teach him 4 feelings?

1.happy
2.sad
3.sick
4.help
I am in the process of teaching these with Speech Therapy support to my daughter, these 4 various feelings provide simple yet powerful descriptions in future life skills.
What is "sick"" need to demonstrate eg
What is "sad""

She has a communication device that is her "voice""

These may be too simplistic for him but perhaps if he learns to associate what does he feel to have a seizure exactly he can provide some warning for him and others who care for him. This is where the Speech therapist can model appropriate questions to his comprehension.
If he eventually can understand simple feelings if can help your GF and others and lessen his frustration, which can lead to negative behaviours.

Remember to take care yourself as a carer sometimes we are guilty in giving giving giving that one forgets to take care of themselves.

Respite is important and caring for someone else is a tough job.

One can minimize certain risks to increase the chances of seizures eg stress
sleep deprivation, fever but sometimes one just does not know why.

 

[Blonde Angel]

Some people get a warning "aura", some don't. The aura can be all sorts of things. Common ones are feeling nauseous, fuzzy/tingly sensations, seeing colors, déjà vu, or hearing sounds. Sometimes you just feel funny. Everyone is different depending on what part of the brain is affected. The so called "aura" is actually the beginning of a seizure, or a very small seizure. However, not everyone gets them. Some people just seize all at once. Even if people around the person can tell when it's starting, the person seizing might not realize it because they are already having a seizure. They might start doing something, or stop doing something, and not be aware of it..

If you tell him what you see before he seizes, or ask him to pay attention when it happens he might learn. Even then, he might feel what is happening when it occurrs, but not remember later. Seizures often cause short term amnesia. They might forget everything that happened a few minutes before the observable seizure.

I do see that after a seizure my girl appears very confused and it takes her a few minutes to be orientated, there is like this lost expression on her face."