Just getting started, really

[kellybones]

Hello,
So. I'm really not sure even how to start.
I'll go back to my first possibly related issue and build from there, I guess.

September 2016, while having dinner with my parents when travelling, I had what I have been terming a "light-headed" spell. I've had them fairly regularly since about 2009 when I started running outdoors. I would generally get them when I would start running without warming up, especially in the hot weather here in Arizona. I didn't think much of the light-headed feeling, to me, when I describe it as, literally, it feels like there is a moment when there isn't enough blood in my brain. After having them for awhile, I hit upon a solution which was to up my electrolytes (it is very hot and I'm a heavy, heavy sweater) and increase my fluid intake, as well as warm-up by walking before starting a run. So long as I was dedicated and vigilant about supplementing and my hydration level, these episodes were basically gone. Any time I did have one, it was when I was doing something out of my ordinary (i.e. travelling, forgot to take my electrolytes, wasn't hydrated enough). I even have had them during half marathons and just kept running, so I didn't think much of it. My mother, on the other hand, lost her gourd when this happened in front of her (I'd been on an airplane, literally an hour beforehand and wasn't hydrated). So, to calm my mother, I promise to go see my GP when I get back to AZ.

GP, in September, checks my bloodwork (fabulous as usual) and sends me to a neuro, just in case. Neuro does her thing - basic neuro physical and then to be safe, sends my for a CT - totally normal. GP on my revisit, tentative diagnoses me with POTS (Postural Orthostatic Syndrome, since my heart rate does spike during these events) and he suggested keeping on top of the fluid intake and the electrolytes but otherwise, not to worry unless things changed.

Fast forward to 3/1/17. I wake up in the morning with a super sore tongue and start getting ready to go for a walk with the dogs (there's 3, and there's walking/running every morning) when my husband stops me and tells me that I had a seizure the night before - tonic clonic. So back to the GP who does my bloodwork (still all in the excellent/normal range) and sends me back to the Neuro where we discuss and determine that my husband has observed at least 4 to 5 automatisms (lip smacking) during the night, possible complex partial seizures. She orders an EEG on 4 hours of sleep (abnormal during the "dozing" phase) and an MRI (with/without contrast - 2 congenital malformations were determined in my right temporal lobe). I'm still in the which medication works phase at this point I guess. I started with Keppra (generic) and hated the RAGE. I could have lived with the tiredness but the anger was just too much. So I've now transitioned to Vimpat.

My questions at this point are related to employment, driving, and exercise.

1.) Who is employed/who is not? I had already stopped working (36 years old but husband wanted a stay at home wife to take care of the zoo - 3 dogs and 4 cats) a year to the day prior to the seizure. I had always had the possibility of going back to work in my head (I was a clinical laboratory technician) if I got too bored, something happened to the spouse, or if I just wanted more money. Now....I really don't know. The tiredness level is definitely rough enough without dropping a highly stressful job on top of it.

2.) I miss my car. Oh boy do I miss my car. I have 25 more days of no car, if everything else works out right. I'm trying SO hard to not count on getting my car back. I'm afraid if I don't that it will feel catastrophic. I've been getting rides with my husband, friends, and Uber. I just feel so dependent! I'm not certain how this is generally handled. Do you just learn to accept it as a new normal?

3.) Like I said, I run. But I also walk, and prior to this, lifted, biked, swam, hiked, etc, etc, etc. I am still walking and running because I just can't imagine NOT being physically active. That being said, finding information about exercise and seizures is hard. Does anyone have any information/links/tips on exercise with epilepsy? I'm currently running 3 or 4 miles a day and walking 3 or 4 miles a day - but I plan to up that as I have a half marathon in Cincinnati in October that I need to start training for.

I know, this is a long one - but I am just starting to find my feet again and I'm really hoping to start to feel more like me again. Hopefully.

Kelly

 

[masterjen]

Hi, Kelly, and welcome to the mysterious world of seizures
It is not uncommon for seizures to have triggers; two of yours, or perhaps the only two, may be the dehydration and resulting imbalance in your electrolytes as a result because of the high intensity exercise you do. A large number of people with seizures need to avoid/control their seizure triggers along with taking medication; medication is only part of the treatment. If you haven't been doing so, keep a diary in which you log the seizures in terms of what happened during seizure, how long it lasted, what you were doing before the seizure, and how you were feeling before the seizure. In your case you may also want to keep a food and beverage log. As well, keep track of when you went to bed, how restful your sleep was, and how many hours of sleep you were able to get. I also have nocturnal seizures, and one of the biggest triggers for me is lack of regular sleep/wake times (ie. not just number of hours of sleep).

To answer your questions:

1. I would say that if you have medical as well as work-place approval to work and you want to work, then you should work. You may want to work a shorter day if possible, in order to keep stress and fatigue to a minimum until you adapt to the medication.

2. I'm fortunate to live where there is public transit, and because traffic is often so busy and can be backed-up during rush hour, I have even come to prefer public transit much of the time! Hang in there for the next 25 days, and avoid your known seizure triggers. If you do have a seizure during that time it may reset the clock again as to when you can drive, but those who have only nocturnal seizures for a given period of time are often eventually given approval to drive.

3. Absolutely no reason to not exercise when you have seizures, as long as there isn't something about the exercise that triggers the seizures. It seems you have this figured out (the dehydration and resulting electrolyte imbalance) so this is great. However given the trigger, you may have to increase your running distance and/or speed much more slowly than you would otherwise, and drink even more water than you would otherwise, as you train. A good training mixture I like is 2 cups of water with a pinch of salt, 1 tsp sugar and a couple squirts of lemon juice (not much different than the expensive electrolyte replacement beverages!) Also, you may want to consider having a running "buddy" for the first while you train to make sure all is okay and then at least running where other people are around.

I hope all works out for you with the medication, and that you are out on the road (running and driving) very soon!

 

[Porkette]

Hi Kelly,

Welcome to CWE! I also have right temporal lobe epilepsy. Masterjen gave you some good advice keeping track of your seizures, by doing this your neuro may be able to see a pattern in your seizures as to what time of day or night you will have seizures and what days of the month. I have both absence and complex partial seizures and vimpat has decreased my seizures a lot.

Sometimes people have certain things that will trigger seizures for them, and being to hot like when I shower is one thing that triggers seizures for me. This may be the problem that you are having when you are running, you get so hot that the neurons in your brain fire up and in turn trigger seizures. Try and put a cold cloth on your face when you are running and see if that helps, this is known as cold water therapy and by putting to cold water on your face and the back of our neck it calms the neurons down in your brain. Stay away from anything that has nutra sweet (aspartame) in it the aspartame causes more electrical activity in the brain and can sometime trigger seizures for some people.

In regards to your questions:

1.I have always worked even after I had brain surgery done twice. I would catch a ride into work and there were no problems even if I had a seizure on the job. I've been working in public school with students for over 31 yrs.

2. Each state is different when it comes to driving. I've never had my license in NY but I can take the bus or catch a ride to work and back home with no problem.

3. It's good to exercise and keep healthy but try not to get to hot because sometimes it can trigger seizures. Also you may want to talk to your neuro about trying the seizure med. Diamox Sequel (brand name) this drug will help get rid of the extra fluids in your body which can sometimes lead to seizures for some people. I've been taking in for years and it works great.

I wish you the best of luck and May God Bless You!

Sue

 

[Nakamova]

Hey Kelly, welcome to CWE! Make yourself at home.

1.) Who is employed/who is not?

I was already self-employed when epilepsy barged into my life (at age 35), so I've had zero issues with my boss or co-workers in accommodating my disorder. I'm also lucky in that my seizures have been basically medication-responsive and I can work full-time from home.

2.) I miss my car. Oh boy do I miss my car. I have 25 more days of no car, if everything else works out right. I'm trying SO hard to not count on getting my car back. I'm afraid if I don't that it will feel catastrophic. I've been getting rides with my husband, friends, and Uber. I just feel so dependent! I'm not certain how this is generally handled. Do you just learn to accept it as a new normal?

I did my time car-free, and yeah, it was no fun. During the time I was unable to drive, I very reluctantly took advantage of my friends and family in all sorts of ways -- and I learned that they didn't mind one bit. Being "dependent" strengthened my relationships in unexpected ways. Although I can drive now, I also made changes to my life based on the possibility that I might not be able to sometime in the future: I moved to a neighborhood that's in walking distance of just about everything (including public transportation), and I moved my office into my home. I know not everyone has those options.

3...Does anyone have any information/links/tips on exercise with epilepsy?

As noted above, folks can have different secondary triggers for their seizures, and for some those triggers may be exercise and exercise-related physiological changes. Generally speaking, most forms of exercise are safe for people with seizure disorders (keeping in mind and individual's degree of seizure control and/or side effects or other health issues that may be relevant). Physical fitness may even have neuroprotective benefits. But since there's a lot of individual variation, paying attention to how you're feeling and keeping a symptom journal can help. Proceed with caution, especially in sports that may have risks for head trauma (such as boxing or football) or in other ways (scuba diving). Since Vimpat and other seizure meds can have side effects (such as dizziness) that can be exacerbated by exercise, it's a good idea to ramp up any routines slowly, and have a workout training buddy where possible. You might find this article about "Epilepsy and physical exercise" helpful: http://www.seizure-journal.com/article/S1059-1311(14)00266-0/fulltext?cc=y=


Best of luck to you in your running and driving. Be well.

 

[valeriedl]

Hi Kelly and welcome to CWE. This web site is great. I've gotten a lot of good answers about questions on here because there are so many people that deal with the same issues concerning seizures that I have.

1. When I was first diagnosed with epilepsy I had to stop working because I was having about 20 seizures on average a month. Many people work here with no problems. I'm having about 5 seizures a month now but I don't work and only reason is that I live in the country and there's no public transportation or anyone that could drive.

2. As I said I have no public transportation here and it is very frustrating. I need to work around other people's schedules, usually my family, in order to get places. I've had epilepsy for 13 years and I guess you could say that I've accepted it and luckily my family has too. We always try to do things, like going shopping, or making dr appts when other people are able to take me. My neuro is only in on certain days of the week and there have been many times that my husband has had to take a day off work because he wants to be the one who's there with me. I have accepted it and luckily my family has too because they never seem mad that they need to drive me places. Keep your fingers crossed for those 25 days though.

3. I've never had a problem with exercise I've just had to take it a little bit easier. If work myself too hard this will sometimes bring on a seizure.

Good luck!

 

[Jeanbean]

Hi Kelly,
Welcome to the forum!! It is a great place to find answers and to support others. I do work a few hours a day only 2 to 3 days a week in food service. I used to work in human services for years so this has been a big change over the years. I received disability this past summer and this has helped so much.

I gave up driving a number of years ago and yes it is so difficult but my seizures have become worse and I have no warning whatsoever and don't want to kill or injure self or others. So even though I can drive I decided not to. I have family and a few friends and Uber and the city bus if needed. As far as exercising I would take it slow and if you have issues decide what to do. I think we all understand having our lives changed with seizures and medications. One thing I did was get an ID Bracelet from www.RoadID.com to wear when I go out. I also have a vagal nerve stimulator for seizures in addition to medication so wanted that information on it, too. It's nice to have that simple peace of mind by wearing that. Wishing you the best, Jeanne