New to epilepsy

[twhkid08]

Hi, I'm relatively new to epilepsy. I'm 20 and I started having seizures in April, 4 days before my birthday. I had my first known seizure a month and a half ago and have had 2 more since then. My neurologist said my first seizure was, or sounded like, a focal seizure that then became a generalized seizure. I've fainted 6 or 7 times between the ages of 7 and 17. I had what I now know to be an aura and thought I was going to faint. I laid on the ground and almost immediately had a seizure. Maybe within the first week of that seizure I had another one where I was sitting eating lunch and had what I think was an aura and then my eyes rolled up and had difficulty keeping my eyes open. A month after being seizure free I woke up excessively tired and had bitten a chunk out of my tongue and cheek. So, I suppose I've had 3 different kinds of seizures.
I've wanted to be a horse trainer almost my whole life and have been apprenticing with a trainer for a year now. Between not being able to drive for 6 months and not having my seizures under control I'm seriously bummed out. My job is physically demanding and I often feel "shaky" a day or two a week. I'm scared to death of having a seizure while riding, even though I've had auras before my first 2 seizures. Has anyone had to change jobs or quit sports due to seizures? I don't know what to do if I can't train horses...
Sorry if I ranted, I'm just glad to have an outlet.

 

[Endless]

Welcome, twhkid08!

This is a great forum. The people here have taught me so much about epilepsy and treatment, and have been a great support network for me, as well. They will be for you, too.

A diagnosis of seizures can mean a lot of changes in life - hard ones to deal with sometimes. Getting those seizures under control is our ticket back to a "normal" life - driving, sports, work.

You are really lucky your seizures were diagnosed early. Are you seeing a neurologist? Are you on medication? If so, which one and what dosage? How is it working?

Make yourself at home in here. Read through old posts. They contain a lot of really good information.

 

[epileric]

Welcome Kid08

Sorry to hear about your seizures. It sounds like you usually get a warning so you at least know when ones coming.

I've had them all my life & I have to admit it has made a difference in that I've never been able to drive and I can't get jobs that either need me to get there when public transit isn't running or do things like work in construction or be a window washer (not that I've ever wanted to do either).

When I lived in the country I actually had friends suggest that I get a horse since I can't drive & the town I lived in was small enough that I could have just tied it up wherever I wanted. I would think a well trained horse would sense if I was going into a seizure so hopefully it would slow down or stop until it was over rather than get scared & run away.

I don't know what's involved in training horses but I can't imagine why your seizures would stop you from doing that.

As for ranting..... don't worry about that. Everyone here has ranted at some point. We even have a "padded room" where we can go to vent & let off steam.

Once more, welcome to CWE.

 

[twhkid08]

Thanks. Yes I've had a neurologist for 5 years, because of frequent migraine headaches. I'm currently on 200 mg Lamictal. I'm not quite up to full strength yet and I have a blood test next week to see what level of the medicine is circulating. I'm just hoping the medicine works.

 

[epileric]

Well good luck with that. Make sure to keep us updated.

You're pretty lucky to already have a neurologist that's familiar with you. Finding a good one can sometimes be hard.

 

[twhkid08]

Sorry to hear about your seizures. It sounds like you usually get a warning so you at least know when ones coming.

I've had them all my life & I have to admit it has made a difference in that I've never been able to drive and I can't get jobs that either need me to get there when public transit isn't running or do things like work in construction or be a window washer (not that I've ever wanted to do either).

When I lived in the country I actually had friends suggest that I get a horse since I can't drive & the town I lived in was small enough that I could have just tied it up wherever I wanted. I would think a well trained horse would sense if I was going into a seizure so hopefully it would slow down or stop until it was over rather than get scared & run away.

I don't know what's involved in training horses but I can't imagine why your seizures would stop you from doing that.

As for ranting..... don't worry about that. Everyone here has ranted at some point. We even have a "padded room" where we can go to vent & let off steam.

Once more, welcome to CWE.

I suppose this would be a good excuse for not getting on 2 year olds, which I am actually kind of thrilled about.

 

[Nakamova]

Hi twhkid08 --

Welcome to CWE!

You raise a good question about what you can or can't do with a seizure disorder. It's different for everyone, and depends a bit on the kinds of seizures you have, and the level of seizure control you can achieve. Seizure control can take a while -- it might involve trying out different meds, or learning what your triggers are and how to avoid them, or using alternative approaches like neurofeedback and diet. In my case, I've found meds to help, and don't appear to be limited in my activities right now. It took some time to get to this point, and to get a sense of what risks I was prepared to take and what compromises I was willing to make. These choices are unique to each individual. You may find that as you become more familiar with how your brain behaves, you can gauge whether horse training will work for you. Don't rule it out yet. If your anxiety makes it too stressful to continue with the training right now, take a break until you feel comfortable with making a decision one way or another.

Best,
Nakamova

 

[RobinN]

Welcome twhkid08 -
My daughter is 18 and her seizures began at the age of 14.
She is unable to drive, however she continues her passion of figure skating at a competitive level. She is not medicated, and controls her seizures with alternative therapies. She has done neurofeedback, and works with nutrition and vitamin and mineral supplements to maintain good body and brain health. She has gone from 6 seizures per month (when on medication) to not having one in 5 months.

Her hormones tend to be a trigger, but when she is maintaining proper health eating habits, her seizure threshold is high enough not to have these symptoms. She also has blood sugar issues, which can target the part of the brain that is effected (in her situation). She is learning how to maintain the best level of nutrition for her body needs.

With focusing on finding your triggers, and finding ways to raise your seizure threshold, I have no doubt you will continue with your passions in life.