Epilepsy

Hi walleyelady. Sounds like you’re doing great. What medication are you on?

YOUR LOVELY DAUGHTER has to stop worrying about having a seizure, because too much worrying will put you in one!!
She seeing a neurologist?
Does she Trust her Neurologist?
I was on Keppra and became allergic to it. The other medications I’ve tried is Depakote and after three years of being on that it stopped working and I ended up having a seizure on that.

Does she know when she’s going to have one a pre-warning? I would get a working dog they can sense when she’s going to have one and get your down on the ground and get her in a safe area and call for help on the help button on her arm. There are organizations that will train with her at very little/no cost to her you. I will look around to try to find them. I just don’t know what state you’re in.

I don’t when I am going to have a seizure either which scares The Living Daylights out of me, but I am now on Topamax and I’ve been on it now for three and a half years and have not had one seizure and I trust that medication. I also see my neurologist every 3 months and I also have an EEG at least twice a year.

If she wears glasses she must have solar glasses since she can get seizures from the sun. Her insurance company has to pay for that because of her diagnosis of seizures and the Sun can cause a seizure.

Has your daughter ever had a traumatic brain injury? I had a traumatic brain injury when I was 9 years old and was always told I could have seizures at any point in time in my life and they never showed up until 2007 and until they got me on the right medication that’s when they stopped.

You got to tell your daughter that is one of the main medications she has got to keep on top of making sure she takes it when she’s supposed to and make sure she has some in her purse. that’s my only advice’s
but please right back to me if you have any questions.

1 thing I did notice is the lights in an elevator there was a time when I was on Keppra and when I went into an elevator I would have a seizure due to the lights why I don’t know and another thing she should not be looking at blinking lights and this time of the season that’s a hard one they’re trying to get away from blinking lights at stop lights especially the red ones.

Good luck to you,

Happy holidays to you and your family and if you ever want to talk on the phone just give me a jingle and I’ll give you my number in a private way take care for now

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Thank you again, walleyelady! That’s very helpful advice. You’re right, she has to stop worrying about getting a seizure. She has taken on a part-time job gift-wrapping at a department store for one month. This is the first time since she got her seizures one & half years ago that she has dared to take on a job. I do drop by once in a while to see her and let her know that it’s alright. She did have a fall from the stairs when she was 9 years old - her friend playfully pushed her and she fell on her face & forehead. Not sure if this could be the cause of her seizures, but this happened so many years ago! She also used to get migraines when in a room with bright lights.

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200 mg of Topamax in the morning and at night.

I would not change it for anything else

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As a pediatric nurse I work with special need kids. Seizures are an issue. We have many on keppra we also have many using CBDs as well with amazing success. There is one child who is also using a nasal spray CBD to break the seizure once it starts.
I can only imagine that your daughter must feel embarrassed that a seizure could happen in front of friends. Perhaps she is incontinent. Encourage her to share her condition with a friend. Once she finds she’s accepted perhaps it will boost her confidence.
Many years ago my son had some friends sleepover. One was insulin dependent. When he took his injection one of the kids teased him. My son told him off and stood up for his friend. He wasn’t teased after that incident. It only takes one person to make you feel better about yourself and shut up the idiots.

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Hello Localgirl
Thanks for writing. Yes, my daughter does wet herself in the midst of her seizures. She has not come to the stage where she’s comfortable with telling her friends about it, not even with close relatives. I am giving her time to come to terms with this as I don’t want to stress her up and will leave it to her to decide when she’s ready. So far, she has told one friend that she gets bad migraine headaches. I guess that’s a good start.

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My dentist actually told me the same thing about traffic lights and blinking lights! He also told me about the blue blocker glasses. Two of my car accidents were at the traffic signal at the same time of day. My gp was not taking me seriously. So my dentist friend diagnosed me before the neurological tests. Thanks for your post. It should really help this young woman.

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I can’t have keppra,depakote, or topramax. Horrible side effects. I tolerate gabapentin, lamotrigine, and vimpat so that’s what I take. Not 100 percent effective but it’s what I can take. Doc wants me to get a seizure dog but I can’t do that to my geriatric dog who is very needy as she’s losing her hearing and vision.
I do have a seizure CAT. He predicts my seizures better than the ‘burning popcorn ‘ smell that is my aura. He’s naturally able to sense it and paws at my face. Never does it any other time. I can just get my meds before it gets intense and I can’t control my movements. Doc says some animals just naturally know

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Hi hollyshort
Thanks for sharing about your seizure cat. My daughter has always wanted a cat, perhaps I should get her one. The blue blocker glasses you mentioned - are they the same as polarised sunglasses?

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I know some are sold for computer work and water sports, like fishing. I don’t think polarized is the same thing. If you ever go to Walmart, try asking the people at their optical center. Then it’s convenient to just go to the sports or computer department to look at them. I’m sure the sports area has sold them in the past. I haven’t googled them or checked on amazon but that’s another good way I learn about these things. Best to you.

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Thank you, hollyshort, for pointing me in the right direction. Will check at Walmart. Cheers.

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Hi, I have epilepsy too.
I take keppra and topiramarate.
1000 mg keppra and 50 mg topiramarate morning and night.
I had many convulsions…I feel very scary in my job…in places out my house…but little bit everything come back in the routine…God is good all the time.
God Bless you and your daughter.

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Ive been on keppra before. Ir turned me into a hermit. Let me restart conversation my name is clyde. When I was 18 i was in a 1 car accident. We hit 6 trees i went through the windshield. In order to keep my 5 different types of seizures under control. It takes lyrica, lamotrigfine & tegretol. And I wouldn’t
Wish a seizure on my worst enemy
Ive had them since I was 18. Ended my
Military career. I had plans of spending
2 0 or 30 yrs in. Ive recently started losing
Weight. Mid January i weighed 225 now
I weighed in at 200.1
Any ideas on sudden weight loss

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Clydeallen, I feel for you. Thanks for your post here. It’s interesting to me to hear about your accidents and seizures. I had a couple of falls down stairs in childhood, and one down concrete stairs at the dolphin show in Sea World in my teens. In addition, I once was thrown from the far back bed of our Rambler station wagon when a relative was learning to drive. This in the early sixties, before seat belts, and I was five or six. Yep, hit my head on the dashboard. Daddy always said I was hard-headed! We didn’t know about these being traumatized head injuries then. And I had a lot more minor ones too. I didn’t want to be a wimp. No doctors for me!

That’s terrible about your military career. So very sorry.

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Clydeallen, I meant ‘traumatic’ brain injuries but autocorrect thinks it’s smarter than I am.

Some medicines make people lose weight as a side effect, or gain weight. It varies with the person, sad to say, and there’s no predicting how they’ll do or how they might interact with each other. These things may change over time. Lamotragine stopped working fo me, and so did fycompa. Aptiom appears to be working, for now. Side effects sometimes crop up in ways you don’t expect over times. It can be frustrating. Even more frustrating is when you feel a seizure coming on, or you have one, and you can’t do something you want to do. And other people think you’re making it up! These major ones are the stuff of nightmares and sometimes it’s hard to get them under control. I’ve had them one after another and never want anyone besides my husbands to see them.

My father and sisters cut me, my husband, and daughter out of their lives because this kept me from an important family event that I very much wanted to attend. I was told people die from these kinds of seizures and that I’m lucky to be alive. We did everything we could to prevent me from having to be hospitalized against my will. One seizure after another with us trying every available med and intervention while I stayed in my bed with hubby by my side. I knew if I went into hospital they wouldn’t let me leave for days.

I’m on disability for seizures after some frightening incidents in front of my students and car wrecks. But my family doesn’t believe me. So, I guess I’m better off within them, but it was a painful thing to see the betrayal. I hope you have some support. I’m grateful for my husband and daughter.

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I’ve been having about twice a week or more with epilepsy/seizures. I couldn’t tell what causes it. Sometimes, autistic overload i hit occipital robe without knowing how strong I’m doing. Sometimes it just happens with no reasons. Up till last months, when i complained how tired it is after having seizures or get confused, (i tends to forget to tell things), she told me about there’s anti seizure meds that specifically targets. Starting low dose and if it works fine, if not slowly increase and see how it goes. The med is depakoeex extended release 500mg T, yes i know it sounds big but it’s not. It is supposed to be sleepy for some, but i take it in morning cuz May be due to autism any meds that waifs makes me drowsy never do. I’ve been on for a month, first week 1 dose, second week on 2 dose, tho 1 worked i my opinión. But i never have seizures anymore!! :) hopefully works well onto next month!

Yeah these smartphones think they’re smarter than us. I wish you all of the best on seizure control. Dr figured out I have 7 different kinds. And at 11 pills a day I’m not taking anymore that that. Still having trouble holding weight. Have a Great and Blessed day

I hope it does work and keeps your seizurea under control
I’ve been on depakote before 3250mg per day. After 10 years at that level it quit working. But there is bbetter and more effective meds out there. Talk to your Dr about your ooptions. Have a great day and God Bless

It helps me with energy

I had my first one at 49. Christmas morning. They tell me I’ve had it since birth. I understand how she feels. After each seizure or med change they take my Liscense away for 6 mths. You start to worry about driving what if, showers, stairs etc. What I did was take each item at a time and worked it out. I never drive with anyone other than immediate family. I make sure they know what to do if I have one while I’m behind the wheel. I make sure everyone knows what to do if I have one. Keep meds, phone numbers etc in wallet for EMS. Doing small things like this helped me feel like I had some sort of control with this. That is one of the problems. I know this was a while back, I hope she is doing great