First time talking

[Jhagman]

Hi everyone.

This is my first attempt at discussing epilepsy with anyone other than my close family. I've never even met another person with epilepsy. I'm at a point of frustration with all of this that I need to really start talking about it and taking it seriously.

I was diagnosed five years ago, at 40. There was some activity that built up to my first big TC but none of the history that sometimes goes along with epilepsy. It was days after my birthday. "HAPPY BIRTHDAY!!...and you have epilepsy now, so take that."

The docs tell me there are no visible lesions or any other culprit they can point to. It just happens. I'll stop there for now before I tell my entire life's story.

Thanks- Jason

 

[Porkette]

Hi Jason,

Welcome to CWE! I'm sorry to hear that you started having seizures, I've had seizures for 45 yrs. now do to scar tissue on the brain but I had surgery and that made a big difference in my life for the better.

I will tell you the best thing to do is to have your family Dr. refer you to see an Epileptologist which is a Dr. who specializes in epilepsy. I have found an Epileptologist has helped me the most compared to all the neurologist I've seen in my life. The Epileptologist will be able to find the cause of your seizures and keep you on the least amount of meds.

One thing you should do is keep track of any seizures you have. Get a calendar and write down what time of day or night you had the seizure and the type of seizure it was this will help the Dr. possibly see a pattern in your seizures. I always have mine the 3rd week of the month and they happen early in the morning or in the afternoon.

Stress and lack of sleep and the 2 main things that can trigger seizures. I had a sleep study done and they found out I was having seizures in my sleep but I didn't realize it then I was put on vimpat and those seizures stopped.

Take my word everyone here can be a big help and I've learned a lot from everyone even though I've had epilepsy since the age of 10 (55 now). I wish you the best of luck and May God Bless You!

Sue

 

[Hobbes]

you’ll connect with lots of people here who have epilepsy or are related to someone with epilepsy! but please know... epilepsy is more common than most people realize. sure you got it at an age where the incidence is lower but one in 26 people get epilepsy at some point. bet you know people who have it, they just aren’t talking to you about it. and more than half don’t know the cause of their epilepsy.

I am a parent of a child with epilepsy. At first the docs assumed it was from damage (different condition) but now they think it’s genetic (as in if a genetic test doesn’t catch why, there would be some new issue to find, but really they would expect to see some odd arrangement in a small set of known genes).

 

[Jhagman]

Thanks Porkette. I have had an epileptologist from the beginning. I’ve been through different drugs. Done sleep studies. Spent two weekends in the EMU doing a spect/octal spect (sp?) Last Thurs after waking up in the hospital confused and sore again I decided I should probably start trying something new. Wife wants me to try the Keto diet. Nephew is sending me CBD. I’m just about ready to try anything that doesn’t sound completely whacko.

 

[Loopy Lou]

I was diagnosed at 21-22ish, (31 now) and also had nothing show on the MRI. I think they just concluded that it was genetic as there's quite a few people on both sides of my family who have epilepsy which can begin at various stages in life (usually as a toddler, teen, early-mid 20s or middle age).

Sometimes there's just no reason and we've just got to deal with it. It's certainly a crap hand to be dealt.

Talking about it can be good, I've found this site so valuable in the years since i've been diagnosed, i sort of dip in and out a lot now, but there's a wealth of information, support and people in a similar situation.

I hope it helps you too

 

[Daroswene]

Hi Jason,

Welcome to CWE! I haven't been here long myself, but everyone is warm and accepting.

I agree with Sue- keep track of your seizures, either on paper or on pc. Make sure to note dates, times, how long it lasted, what was going on at the time in case it was a stressor. My lupus doctor uses an app that allows me to keep a journal, so I write all of lupus and epilepsy items there. She sends it to my neurologist before each appointment.

I've had epilepsy since I was 6 months old; they think it was because of encephalitis. The doctor then took me off meds at age 5 because they thought I outgrew it. At 16, the seizures were back. I now use daily meds, Lorazepam for breakthrough seizures, and a VNS.

A lot more people around you probably have seizures, but most won't talk about it. Even now, there can be a stigma. Even those who know me and who have been shown how to use my VNS magnet don't get involved.

Talking about it with others who have it helps me and there's a Facebook group for spouses that my husband joined that helps him. I know my seizures scare him and wish they didn't, but together, we get through it.

As far as trying new things, make sure to keep your doctor in the loop.

Jennifer


Sent from my iPad using Tapatalk

 

[valeriedl]

I had my first seizure 14 years ago when I was 27 and they have no clue, and still don't, know what caused it. I they did find damage to both sides of my brain but they don't know where that came from.

I didn't know anyone with epilepsy or know anything about it. Before my first seizure all I thought a person with epilepsy was one who had seizures and a seizure was when you fall to the floor and start shaking like crazy - a grand mal. I never knew there were all sorts of seizures!

This web site is great! I've learned so much about epilepsy since I've joined it. You can ask a question about something because you think you are the only one out in the world who dealing with it and find out there are so many other people who are too. You can get so much help and be able to give it.

My family isn't on the web site but they've learned a lot about epilepsy because of things that I've told them. My seizures used to scare the crap out of my parents, and usually still do, but I tell them what I did during the seizure can be normal and they'll calm down some. I met my husband a year after I was diagnosed and at first my seizures did scare the crap out of him but now he can usually just watch me have one and wait for me to come out of it because of things I've told him about seizures.

I'd been on several different drugs but none seemed to really help so my neuro suggested a VNS and it has helped a lot. I'm still taking meds along with it, not nearly as many or as high of dosages though.

As everyone's said keep a seizure diary with the date, time and as much about the seizure you had that you know. I give a copy of this to my neuro and it makes my visits go much easier.

It's nice to meet you!

 

[Nakamova]

Hey Jason, welcome to CWE!

My seizures appeared out of the blue when I was 35. For various reasons, the timing seemed particularly cruel, and like you I had no prior history. I know how frustrating it can be not to know the "why". That's actually the case for the majority of people who develop a seizure disorder -- there's no obvious cause, no metabolic problem, no clear injury or structural problem with the brain.

It's now more than 15 years since those initial seizures, and although it would still be interesting to know "why", it's become much less important to me. I'm not sure it would give me any particular peace of mind (so to speak ), any more than it has for the people who do know the primary cause for their seizures.

What has helped is the perspective and support that I've gained from folks who "get it" about epilepsy. CWE has been great for that! I hope you enjoy similar benefits from this community. Feel free to explore past threads and start new ones. Make yourself at home.

Best,
Nakamova