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Epilepsy Diagnosis
A MyEpilepsyTeam Member asked a question 💭

When did you get it?

1950s

1960s

1970s

1980s

1990s

2000s

Last of 101 replies sign up to view previous answers
A MyEpilepsyTeam Member

Diagnosed 1992 I think winter. Oh wait nope summer.

I'm Thinking About Going For A Disability Check, Do You'll Think I Should?
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

Raylene, There are two-2-types of Disability that Social Security issues they are: SSI and SSDI . Be certain that you get the type of Disability that you are qualified to receive. SSI only gives… read more

When You Were Told That Medication To Assist You, Did You Choose Surgery Or Alternative Solutions? How Well Did It Work For You?
A MyEpilepsyTeam Member asked a question 💭

I have heard in the past from several friends who have tried many others including surgery, implants or non-medication alternative methods. However, I think it would help if those of you who have to share your experience with those are now at the point where they have been told that medication will never allow them to reach a long-term seizure free state.

If Q + A section was better organized, then I would not have to ask this question, but we have a support site, so we have to do what we can… read more

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member Everyone gets nervous. Usually what helps is if you talk to your epileptologist/surgeon. From the surgeon, I learned there was a better chance of dying from a car accident… read more

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Vns Therapy
A MyEpilepsyTeam Member asked a question 💭

i want to know as much as possiable about it they r talking about doin this on my daughter

A MyEpilepsyTeam Member

I have a VNS also, I am not very organized so I don’t know where my 🧲 magnets have gone. The battery 🪫 in my VNS is dead 💀 right now. My neurologist recently told me there is a new and improved one… read more

Has Anyone Experienced A Significant Increase In Frequency And Severity Of Seizures With Perimenopause?
A MyEpilepsyTeam Member asked a question 💭

I am 100% positive that hormones are playing a huge factor in both the frequency and intensity of my seizures but I’m not sure where to start to address it. If anyone has any suggestions, PLEASE let me know!

A MyEpilepsyTeam Member

I started with seizures just as I was coming out of menopause at 54. I’m going to be 64 in June. All of my family and friends as well as myself think my epilepsy was brought on by a hormonal change. I… read more

Jobs Vs Disability (SSDI)
A MyEpilepsyTeam Member asked a question 💭

Ive been fired from 6 jobs within the past year alone for "too many missed work days" due to seizures. Or my co-workers "being uncomfortable w my epilepsy and chance of seizures". I had a seizure at work at 2 of my jobs and was fired from both shortly after each. My question is, how do you handle others who don't understand epilepsy in the workplace? I'm currently applying for SSDI but it's taking FOREVER! Would you apply for disability or continue to work knowing it would be a less than 6… read more

A MyEpilepsyTeam Member

I applied for disability and had no problem getting it but my situation is a bit defferent because I became legally blind first. I can only see center vision on my left eye and on right lower vision… read more

My Medicine Listing Per Day, I Believe Is Too Much !
A MyEpilepsyTeam Member asked a question 💭

My Daily Medicine List
1- Dilantin ((Brand Name) caps 400mg. Per day
2- Lamictal (Brand Name) 700mg. Per day
3- Verapamil 80 mg. Per day
4- Zone gran 400mg.per day
5- Dilantin (chewable) 50mg. Per day
6- Tranxene 7.5 mg per day
7- Singular 10 mg per day (Asthma pill)
8- 2 puffs Advair 2 times per day (Asthma)
9- Sleep with BIPAP at night (improves sleep)
10- As needed to stop seizures 2mg Lorazapam
(Which is only given when I have clusters
Or a longer than normal seizure,… read more

A MyEpilepsyTeam Member

Wolf2677, I am 59 almost 60-10/10/17. For me its been alternating medications and dosages. So far we haven't discussed surgery. Prior to my marriage seizures were about six weeks apart. I got… read more

What Experiences Do People Have With Lamictal And Briviact?
A MyEpilepsyTeam Member asked a question 💭

I am currently taking 1500 twice a day of Keppra and 150 of Vimpat twice a day. I have vision and fatigue as my two major side effects with Keppra and have talked with my doctor about switching medications. I would continue with the Vimpat, but switch my Keppra to either Lamictal or Briviact. I have done research on both, but would like to hear experiences people have had with both before I make any decisions.

Thank you in advance, I appreciate it!

A MyEpilepsyTeam Member

i had a side effect on Lamictal with Phenobarbital. It didn't work for me. I never been back on it since. That when i was in my 20's. I had a side effect Neurontin i still do to day they try that… read more

Does Surgery Make The Seizures Go Away Fully?
A MyEpilepsyTeam Member asked a question 💭

I have been epileptic since I was about 7 years old and am now 27 years old and feel like this past year has been one of the worst when it comes to the amount of seizures I’ve had
At the beginning of 2019, my doctor and I decided to try a new medication called Lamotragine and slowly take me off the older medication carbamezapine as I wasn’t fully under control. While I was on the carbamezapine I would have about 1 seizure/year and it was durable and livrable. We decided to lean another… read more

A MyEpilepsyTeam Member

I had a right lobectomy surgery back in 2012. It never stopped my seizures but it did reduce them by more than half! I was haveing about 20+ gran mal seizures a year and now im having like 5-8 a year… read more

I Have Read About People Losing Loved Ones To Epilepsy Is It Epilepsy That Takes Them, Is It What Happens To Them During The Seizure.
A MyEpilepsyTeam Member asked a question 💭

My wife is living with epilepsy and I am so scared to death of losing her. I would like to know if there is anything we could do, or is it something that's inevitable?

A MyEpilepsyTeam Member

I would say when for some reason the seizures can not be controlled, no matter what they do