How e afraid of the next seizure?

[Janus]

I was just part of an epilepsy support/study on coping Edith E and one of the topics was how afraid are you of having a seizure. I did not really think of this before. I am now on new meds (depakote) and a week past my normal break through of every 2 weeks. I sometimes have status epileptic+us ( nonstop).. And so I am afraid to stay home alone alone. Is this normal? Anyone else have these fears? It's no way to live. I even walk on main roads. And I am a person who needs lots of privacy. I want to. ( actually NEED to) make art but afraid to weld. That machine is dangerous.??

 

[Porkette]

Hi Janus,
I'm so sorry that you had a status seizure, the same thing happened to me when I was put on Neurontin. I took Depakote for yrs. for my absence and complex partial seizure and it worked great for me. I will tell you that it can cause aneorxia where a person can either gain or lose weight. I lost 70 lbs. in 4 months and I was still eating regular meals each day but the drug burnt off the calories so fast and in turn I lost the weight. I also had to keep watch of the liver and have blood test done every month. You should call your neuro and see if you can try a different med and get off the Depakote.
Years ago I was often afraid when I was a kid and had seizures because I didn't understand what was going on and I would wander around and find myself in a different room or location do to wandering when I had my complex parital seizures. I later found that eating to many carbs and starch foods is what was really triggering seizure for me and I started the ketogenic diet and that worked great reducing the seizures. I wish you only the best and May God Bless You!

Sue

 

[Frink]

Congratulations on going the extra week! Never been status. I hate every seizure but I am not afraid of having one and I spend most of my day alone, well, with 2 dogs, they are good company but not much on conversation and not much help after a seizure.

 

[seagull]

I never had status but parts sz can gone on for days like the spell panic body parts have tic...this sort of thing the other thread that mention having test that show sz ten minuets
1 have seen status meaning time with servere e I sure if not at my daughter school they would died.Any one a Brit with child with e get in touch with them. I saw one nurse per patient with status usuall 5 or 6 at the time most of the kids got better many did GCSEs that was rare all were given self esteem and many come normal young.It not easy thing getting them therefore you have education Heath and social service will give all family test anitview..They also had foreign kids too.

 

[valeriedl]

I had my first seizure 13 years ago when I was 27. I was status E and had to be put into a coma for about 3 weeks to make my brain calm down to stop the seizures. I was in the hospital for almost 2 months before I was able to come home.

When I came home I had to move in with my parents because I really wasn't able to live by myself. I'd been taking tons of different meds and dosages. Some helped, some did nothing and some actually caused seizures. I was scared to death to be alone because I was having seizures left and right and never knew when they were coming on. It took awhile before I felt ok to be alone.

I'm perfectly fine being alone and doing things. The only thing that I really don't like to do is cook on the stove or in the oven. And that's only because I almost never know when a seizure is coming on. I will do it though. If you know when you are going to have a seizure then you should be ok welding.

I know in general there are things that other people, mainly my family, think there are things that I shouldn't be doing when I'm alone or even just doing in general. But just because I have epilepsy doesn't mean I'm going to stop living my life.

 

[Belinda5000]

I don't worry about when my seizures may or may not happen. All i get is a feeling sometimes when they come on a head of time; and if some one can't handle seeing me seize they should stay away from me.My mother thinks I shouldn't come off Tegretol when I 'm going into my neuro's office at full throttle to talk with him and to about coming off the med slowly after 41 years.

 

[Cint]

I was just part of an epilepsy support/study on coping Edith E and one of the topics was how afraid are you of having a seizure. I did not really think of this before.

Ahh..... the power of suggestion....onder:.. If you've never thought of it before, then don't let others put those ideas in your brain

I am now on new meds (depakote) and a week past my normal break through of every 2 weeks. I sometimes have status epileptic+us ( nonstop)..

If you keep having status, then something is wrong and you either need to see a different dr. or get a different med or combination of meds. It sounds like you are expecting to have another seizure?

And so I am afraid to stay home alone alone. Is this normal? Anyone else have these fears? It's no way to live. I even walk on main roads. And I am a person who needs lots of privacy. I want to. ( actually NEED to) make art but afraid to weld. That machine is dangerous.??

At one time, I was having lots of TC seizures and was afraid to be home alone. Several times I went status and was in the hospital because they thought they were going to lose me. So they had to change meds and find something that worked for my specific type of seizure(s). If anyone goes status, then they should NOT be left alone. It is dangerous. And one shouldn't be doing something like welding either, if the seizures are not under control.

Now, my seizures are better controlled. I have not had a TC in nearly 15 years and only have a few CPs a year. I do live by myself now and live close to public transportation, so I can get to the places I need to go. However, I do not have a job because of the seizures and other medical problems.

 

[acshuman]

Janus,
If you had never thought of 'how scared are you of having your next seizure', you weren't scared. It is amazing how dumb some questions can be! All this question does, as worded, is make a person who has E have more anxiety or paranoia. That question should either be remover from the study or it should be reworded to ask about how you feel about your E, NOT simple asking a person 'how scared are you'.
It is like you said, you had never thought about having any type of fear before so they definitely shouldn't be asking about it, because you are dealing with your E in the proper way. You aren't worrying about your E, which is great!

ACsHuman

 

[seagull]

Thing is hunny keep saying that to someone who got e maynot been scared but if you asked enough times then you may talk them into it it might start playing on people's mind.
Not many generations back it would been everyday occurrence seeing people with e wait it out then go home that was the lucky ones the others got put in epilepsy hospitals for life.It was people with e putting foot down saying we want lead normal life not spending time worrying about it happening it not be very nice life.I had breast cancer some years back if spent time worrying about that and e I not get out of bed.Life in general is a risk but people with e know what they have and being treated other people with no e have equal chance of sz.Asking if you scared propagates the fear others have...Obviusly not thrilled about situation,have you asked insulin dependent person same question

 

[Zolt]

What will be will be, that's what i reminded myself when i had my brain tumor surgery. At the time i didn't think i would make it, so i just let myself go into the surgeons delicate female hands.

Do i fear seizures, in a way yes, because i hate it when it happens, and lord knows how it will turn out. When it's happening, it's like a religious moment, not knowing if it will be my last one or not. I just make peace with myself and those around me. Because i know i'm on borrowed time, thanks to the advance of modern tumor surgery. Hundred years ago, I would have been dead. Seizure do limit my actions somewhat, but if there is something i want to do, i'll do it, otherwise i'm happy to be home, alone, or with friends.

But bottom line, i'm not worried if lightening will strick me, because if it does, then what will be will be.

Like others said, do what you need to do to get those status elipitisue under control.

iano: op: