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Living Alone With Nocturnal Grand Mal Seizures

Living Alone With Nocturnal Grand Mal Seizures

Does anyone live alone with Grand Mal Seizures- Only during sleep. My son, who is 21, wants to live alone. He only has Seizures between 1am-3am. He has about 5 seizures a year. Depending on "the severity" of the seizure it can take 10min-60min, to recover. He usually comes and gets me after he has one. He resembles a "drunk" in his recovery. What steps or safety measures do you take to live independantly?

He also have AWFUL dreams periodically since taking Lamictal. Anyone else?

A MyEpilepsyTeam Member said:

Katie Your son will be fine on his own. Think of how little they harm himtlr physically. Confusion etc but this abates too. And so infrequent too. Why let this control his entire lifestyle? He can handle a seizure well knows the cause and bow to settle after. Please don't worry he'll be fine .

posted 2 months ago
A MyEpilepsyTeam Member said:

I have been a epileptic since I was 7yrs old.
Am now 62 and retired.
I cannot tell you what your son needs are you know best.
Being a father myself I worry about my children also.
However I realize that when a child wants to fly you have to let him go . If he can financially do so.
Knowing that he will always have you by his side to help when need be.
A parents love never ceases even when you lose a child.
Then you ask yourself did I do everything right. This feeling can weigh on a person for life.
What I guess I'm saying is even thou he suffers from this disease he needs that chance to live on his own.

Grand mal (tonic clonic) seizures I suffer from also.
After a seizure I will take a 3 to 4 hour nap. While I recover what you say resembles a "drunk" is called postictal confusion. It also can take up to a half hour for me to recover. I will also have muscular pain from the clonic stage that will last a few days.

To give you some peace of mind have a medical alert alarm activated on his person to notify the hospital and you also when he needs it.
Have him add a medical alert app on his phone that will always be at a paramedic aid and notify you if he needs it even thou his phone can be locked out the app will give the access needed.
Paramedics look for this type of app when phone is around the person needing help.
Be open minded if you have alert given to him and there is a issue he still has to live on his own if he wishes it.
You cannot take that away from him.

Set up a time of day were you can call him and see how he doing on a daily basis. Invite him over for dinner if he has able transportation
Look back to when you wanted to leave the nest and understand how you felt.

As for medications
you are aware medications don't always work.
Every medication I have taken has had some type of side effect.
Over the past 10yrs I have had five medication changes
Each medication had a different affect .
One I became mean with my family
One made me cry all day
One made me sleep more hours half the day
One gave me perverted thoughts. I did not leave my home for almost a year.
When taken off this particular medication the withdraw took almost another year.
This by far was the worst medication I was ever on.
The fifth medication I'm on has worked for me the past 3yrs. I have been seizure free for that time. The medication I'm now on is Lamictal 700 mg daily.

I have felt like a lab rat with all these changes in medication.
And I have had a lot of anxiety with these changes.

As a parent myself only you and your son together can work this out.
I wish you my best in both you and your son on this endeavor.

I leave this long letter by giving you a u tube look on epilepsy you might like.
U tube Epilepsy it is a 9 minute video

Have a blessed evening

posted 2 months ago
A MyEpilepsyTeam Member said:

Nocturnal seizures are hard, i have only had a couple, most of mine are in the day. But levels of independence is important. People i know who have also had nocturnal seizures had resorted to getting a special seizure detecting watch. The device can detect certain movements as potential seizures, and it gives a bit of a warning, if the person doesnt press a certain button in a certain amount of time it notifies people that are in the emergency contact list. Those people were able to gain more independence with it. I had no choice but to move out when my seizures were at my worst so i moved into whats called a rooming house, rent by the room, rooms like the kitchen and washroom were common areas, and there were a few others who lived in the house. It made rent a lot more affordable, but there was also the safety of being not completely by myself. I let everyone in the house aware and instructed them what to do incase something happened, thankfully those instructions also included contacting a friend of mine. And they would either come help, or over the phone talk with them about whst to do.. another option to help with independence in a safer way, is to live with a roommate that already knows, and trusts, and if their not already aware of how to respond in case of a seizure happening teach them.

posted 2 months ago
A MyEpilepsyTeam Member said:

I was diagnosed at 7 when my parents were told by a teacher I was deliberately not paying attention to her. They knew since I wanted to be a teacher, I would not do that. They took me to Yale New Haven Hospital, and I was tested. I had Epilepsy according to the EEG. In 1959, what I had was called Petit-Mal. My seizures got worse when I began to Menstruate. My Period was not regular, so could not guess when they might be more likely to happen.
Eventually I had taken all the Seizure Medications then known, when I was in my early 20s. After a number of tests, the doctors and Neurosurgeon said I would be eligible for a Temporal Lobectomy. Yes, such a step has an effect on the entire family.

Yet since it might help and I was eligible, I decide to try it. When it did not entirely stop them, I became depressed. However, my Doctors told me if I had not had it, my Left Dominant side could be more damaged. It was possible if I continued seizures there, where I remember, speak, move and other things would experience Mirror Seizures. That could mean damage to those skills.

I more recently was with Dorothy 24/7, about. She knew how to know if I were going to have a seizure and what to do. I had to urinate, often. Lack of quality sleep, and eating well were triggers. So is Stress.

When I was with Dorothy, sometimes at the Check-out line, I would have a severe seizure. With those I had to hold onto the Shopping Cart because I was loosing my balance. I would not know where I was. They wanted to call 911, but Dorothy assured them I would be fine. She could tell by my face when I would have a seizure and what to do.

Dorothy died a few months ago, so I am on my own. I do have a Conservator, and because I do not drive, someone brings me to Doctor's Appointments, shopping, the Bank and other errands.


posted about 2 months ago
A MyEpilepsyTeam Member said:

I had a seizues 7 years ago at supermarket. Everyone Thought I was drunk. I asked for help one that told the Manager call 911 she was from my church we became sisters

posted 2 months ago
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