Hi everyone. Glad to be part of this community.
Has anyone any advice on Epilepsy? My once-bubbly 24 yr old Daughter suddenly started getting seizures 2 years ago for no apparent reason , never ever had it before. She’s on Keppra which seems to work, but she’s lost confidence in herself and is living in constant fear of getting another attack. How do I coax her out of her fear so she can live a normal life again?
Hi everyone. Glad to be part of this community.
Had but outgrew it at 24! Yay!!!
Idiopathic Grand Mal Epilepsy is NO JOKE. ALSO KILLRD ME QUITE A FEW TIMES! HAD TO BE RECUSSITATED MORE THAN A FEW TIMES! HAD A PHNEUMOENCEPHLAGRAM,WHICH PUT ME IN A COMA FOR 9 DAYS.
I was 23 and in Navy flight school when I suddenly started having seizures. The Navy sent me to Bethesda Naval Hospital in Maryland where I spent the next 3 months undergoing tests. I was pretty much a training tool - when I would come out of a seizure there would be 5 or 6 corpmen trainees learning about epilepsy with the doctor explaining what had happened. After one of the numerous tests I was very frustrated since no one could tell me “why”. The civilian Dr sat with me and told me I was lucky, that if they really found a " cause", it would likely be some type of tumor, and the success rate for surgeries was not good. On the other hand, not having an identifiable cause meant it was just “epilepsy”, which was some abnormality in my brain that caused it to randomly fire off electrical impulses that caused the muscle spasms, and usually it could be controlled by meds. That was in 1970. I am now 72. I was medically retired from the Navy. Being a Navy pilot had been my dream and goal since I was 6 years old. I am now on Keppra too. I have changed meds several times over the years, having occasionally had seizures, but very few. I went law school and have practiced law since 1974. It took time to mentally adjust to the fact of my disability, but my wife was very supportive as was all of my family. I joined one of the national groups supporting research and tried to become educated about the details of epilepsy - I have more than once stepped into discussions where someone was talking about having seen a seizure, and expressing the ignorant view of why it happened. I have been able to live my life, and my epilepsy, while a part of my life does not control me. Your daughter can succeed at just about anything she wants to do. Become educated about the disease. Most epilepsy is first diagnosed at a much earlier age. Find some way to help kids with epilepsy. Many times they really have a hard time adjusting, and the treatment they receive from their peers when they have a seizure is often very cruel - it helps to know how to explain what has happened and why. Get information from the national epilepsy foundation, and have her discuss her questions and fears with someone who has coped with the same issues.
Thank you, Patarky, for your invaluable advice. You don’t know how much renewed strength & hope you have given me!
CBD or cannabis oil. My oldest daughter has epilepsy. The oils have made her attacks non existent. I’m not saying it’s a cute but it’s worth a try.
Thank you, all, for sharing your experiences on epilepsy.
Caroll, hello my name is Missi. I jabe jad Epilepsy since I was 9 years old. And yes it is a scary thing. But if she can keep herself busy and definitely keep her friends around her! She will be ok. Now I have 1 Concern! And it is very important! !! I was on KE£p=a, and so are many other people. You need to watch her close on that. There are many many bad side effects! Many people ( me included) had psychiatric problems do to this drug! I was diagnosed by polar. I started to hit my husband. And was thrown in jail. And it was due to this drug. They took me off of it and have had no problems. Just watch her on it! And if you see.any of those signs at all! GET HER TO HER DR ASAP!
Thank you for the warning, Missi.
Have not had an episode of seizures in four and a half years. I’ve been on excellent medication I see my neurologist on a regular basis and have any emojis done on a regular basis my neurologist also does my migraine medications. My neurologist he is with Minneapolis Clinic of Neurology and his name is spelled Dr Ghazali and his phone number is 763-427-8320
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
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.
200 mg of Topamax in the morning and at night.
I would not change it for anything else
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.
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.
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.
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
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?
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.
Thank you, hollyshort, for pointing me in the right direction. Will check at Walmart. Cheers.