Trying to work around seizures...

LenGray

Hey everyone! I'm currently on W3D1 of C25k and am supplementing my workout with bodyweight exercises 2x a week. I've been doing a really great job sticking to my deficit and workout routines...until yesterday.

I have epilepsy. My seizures aren't all that bad considering and I'm not on any medications. As a matter of fact, getting in shape so I might not have to be on medication is a huge motivator for me (I'm 26 and my family's epileptic episodes get worse in their 30's)

Yesterday, I had a pretty bad seizure progression. It started off with some simple partials (ringing in ears, etc), went into complex partials (localized twitching, messed up depth perception), and ended with a severe myoclonic seizure (long stare followed by a full-body jerk that knocked me on my *kitten*) It was obvious enough that I had to be sent home from work, which means my dad found out about it.

My dad is really worried (my aunts and grandma died from seizures) and told me that he thinks that I'm stressing my system too much with the exercise I'm doing. He wants me to stop working out until I get okayed by a doctor and to eat at maintenance for a while. The soonest I can get in to my doctor is a month from now and I have a 5k scheduled for July that I'm really excited about and don't want to miss.

I know you all are just internet strangers, but any idea how I can help convince my dad that my training isn't the problem? Also, any suggestions about how I can stay safe while stressing my body with exercise? I love my dad and value his opinion, but I just don't feel he's right in this instance.

TL;DR- My dad is worried that my training for a 5k is a contributor to my having more severe seizures than usual. How do I convince him it isn't and stay safe during training?

janjunie

I don't understand how you can have epilepsy and not be on medication, esp with your family history. I had epilespy when I was a child and was on at least a couple drugs. I agree with your dad, wait until you are okayed by your doctor to work out.

Just curious what kind of diet are you on? People with epilepsy are usually given a hflc diet.

BlueSkyShoal

I don't know enough about epilepsy to be comfortable recommending you to encourage your dad to let you continue training. Especially since, if it's been in his family (aunts and grandma), then he probably knows a thing or two about seizures.

To be honest I think you should do what your dad says: wait until you meet with a doctor and make sure that what you're doing is safe. I get that you're excited about the 5k, but there will be other 5k's. Whereas you only get one body in this life.

TavistockToad

I'm not sure how you can not get an appointment with a doctor for a month if you just has a seizure?

RuNaRoUnDaFiEld

Get your doctor to speak with your Dad.

My sister is epileptic and runs several times a week.

girlinahat

TavistockToad wrote: »

I'm not sure how you can not get an appointment with a doctor for a month if you just has a seizure?

this. Try again with the doctor - especially if your seizures have changed recently.

Your dad is worried about you - and quite rightly given your family history. But that doesn't mean you shouldn't run - there are plenty of runners with epilepsy [url="http://"]such as this teenager[/url] but like any illness, it requires consideration and building into your workout. BUT, that will require discussing it with your doctor - presumably you have a specialist who knows about seizures?

there are other 5ks. You can walk it if need be. Don't risk your health over it. Or stress yourself or your dad.

LKArgh

No one here has any idea about your medical history and about what is or is not safe. Your dad might be 100% wrong or 100% right for all we know. You need to talk to your dr.

lorrpb

To convince your dad, do some research and find some medically reviewed articles that say exercise and running do not aggravate epilepsy in any way. If you can't get into doctor, can you call the nurse and ask if your workouts are medically acceptable? When did you last see the doc? Did you discuss your exercise routine at that time?

LenGray

@janjunie, My current doctor doesn't want me on medication because I'm young and she feels as though the possible liver complications aren't worth it with my level of seizure activity. She also doesn't have me on a specific diet, and says that any diet will help because I'm so overweight.

I've had a few grand mal seizures in my life, but mostly I have myoclonic or complex partial seizures so she says she isn't worried? They're getting worse though (this is my second severe seizure progression in the last 6 months) so she might change her mind. My dad's worrying a lot because he said that I'm progressing the same way that his mother and sisters did and I'm near the same age they were when they started having grand mals regularly.

@TavistockToad, *shrug* It took me over a year before I could go see a neurologist to get diagnosed with epilepsy and that was when I was having 5-10 seizures a day. My dad's getting angry enough at this point that he's looking into other doctors now though.

@lorrpb, After thinking about it, I'm pretty sure that my dad's just worried because I run alone. A few days before this latest episode I'd mentioned that I'm going to have to leave my neighborhood because I'm running faster/farther. I suspect he doesn't have anything against me running so much as he's worried about me having a seizure and not being in a place where I can get help.

I saw my doctor in September and discussed losing weight, but not running. She suggested watching my calorie intake and doing some form of exercise for 30 minutes a day and said that hopefully if we got my weight down that the seizures wouldn't be as severe and I wouldn't have to go on medication. My dad thinks that's ridiculous since I've had a grand mal seizure while being 145 lbs before and doesn't think she's taking my condition seriously. As for the nurses, they just keep telling me they'll let my doctor know and she'll get back to me

*sigh* Reading it out like that, I definitely see his point. I just really love running and hate feeling so powerless all the time when it comes to having seizures...

SoozeE512

I looked at your diary from Monday and your salt intake was excessively high. High sodium can trigger tinnitus (ringing in ears), muscular twitching, and seizures. Keeping your daily sodium intake closer to the 2300mg goal as set on your diary would probably be a wise thing for you to watch to prevent this from continuing. Make sure to stay hydrated with water too.

janjunie

LenGray wrote: »

My dad thinks that's ridiculous since I've had a grand mal seizure while being 145 lbs before and doesn't think she's taking my condition seriously.

I completely agree with your dad. I'm guessing your doctor is not a specialist, the lack of medication is a big red flag, I never had grand mal seizures either. Back in the day I had what was then just called petite mal and was given medication, because even though I still had seizures, the medication made them less frequent and severe. It was for my own safety, I could be walking across the street have a seizure and bam a car hits me....stuff like that.

lorrpb

LenGray wrote: »

@janjunie, My current doctor doesn't want me on medication because I'm young and she feels as though the possible liver complications aren't worth it with my level of seizure activity. She also doesn't have me on a specific diet, and says that any diet will help because I'm so overweight.

I've had a few grand mal seizures in my life, but mostly I have myoclonic or complex partial seizures so she says she isn't worried? They're getting worse though (this is my second severe seizure progression in the last 6 months) so she might change her mind. My dad's worrying a lot because he said that I'm progressing the same way that his mother and sisters did and I'm near the same age they were when they started having grand mals regularly.

@TavistockToad, *shrug* It took me over a year before I could go see a neurologist to get diagnosed with epilepsy and that was when I was having 5-10 seizures a day. My dad's getting angry enough at this point that he's looking into other doctors now though.

@lorrpb, After thinking about it, I'm pretty sure that my dad's just worried because I run alone. A few days before this latest episode I'd mentioned that I'm going to have to leave my neighborhood because I'm running faster/farther. I suspect he doesn't have anything against me running so much as he's worried about me having a seizure and not being in a place where I can get help.

I saw my doctor in September and discussed losing weight, but not running. She suggested watching my calorie intake and doing some form of exercise for 30 minutes a day and said that hopefully if we got my weight down that the seizures wouldn't be as severe and I wouldn't have to go on medication. My dad thinks that's ridiculous since I've had a grand mal seizure while being 145 lbs before and doesn't think she's taking my condition seriously. As for the nurses, they just keep telling me they'll let my doctor know and she'll get back to me

*sigh* Reading it out like that, I definitely see his point. I just really love running and hate feeling so powerless all the time when it comes to having seizures...

So stay in your neighborhood and run a few loops if necessary. It might not be as interesting, but safe is more important. Is there any type of medical alert/alarm you can wear that would give him greater peace of mind? There certainly are runner ID bracelets.

jessiferrrb

if your doctor isn't concerned about your seizures, it's time for a new doctor. my little brother has been through several neurologists and literally dozens of medications to curb his partial, complex, atonic, tonic clonic, absence and screaming seizures. he's never had a grand mal. he isn't triggered by exercise, but he does mostly the recumbent bike at the gym in his apartment building where it would be unlikely that he is alone and without help. if you have an option to run on a treadmill somewhere supervised - or just public where help is close at hand - and your doctor thinks that running is ok, i think it would help your dad to be less scared. but he's always going to worry.

Heather4448

You need a new doctor.

janjunie

lorrpb wrote: »

LenGray wrote: »

@janjunie, My current doctor doesn't want me on medication because I'm young and she feels as though the possible liver complications aren't worth it with my level of seizure activity. She also doesn't have me on a specific diet, and says that any diet will help because I'm so overweight.

I've had a few grand mal seizures in my life, but mostly I have myoclonic or complex partial seizures so she says she isn't worried? They're getting worse though (this is my second severe seizure progression in the last 6 months) so she might change her mind. My dad's worrying a lot because he said that I'm progressing the same way that his mother and sisters did and I'm near the same age they were when they started having grand mals regularly.

@TavistockToad, *shrug* It took me over a year before I could go see a neurologist to get diagnosed with epilepsy and that was when I was having 5-10 seizures a day. My dad's getting angry enough at this point that he's looking into other doctors now though.

@lorrpb, After thinking about it, I'm pretty sure that my dad's just worried because I run alone. A few days before this latest episode I'd mentioned that I'm going to have to leave my neighborhood because I'm running faster/farther. I suspect he doesn't have anything against me running so much as he's worried about me having a seizure and not being in a place where I can get help.

I saw my doctor in September and discussed losing weight, but not running. She suggested watching my calorie intake and doing some form of exercise for 30 minutes a day and said that hopefully if we got my weight down that the seizures wouldn't be as severe and I wouldn't have to go on medication. My dad thinks that's ridiculous since I've had a grand mal seizure while being 145 lbs before and doesn't think she's taking my condition seriously. As for the nurses, they just keep telling me they'll let my doctor know and she'll get back to me

*sigh* Reading it out like that, I definitely see his point. I just really love running and hate feeling so powerless all the time when it comes to having seizures...

So stay in your neighborhood and run a few loops if necessary. It might not be as interesting, but safe is more important. Is there any type of medical alert/alarm you can wear that would give him greater peace of mind? There certainly are runner ID bracelets.

There are MedicAlert bracelets, these are actually very important. I wore one, completely forgot about it until you mentioned it.

itsbasschick

wow, your doctor sounds like she's making this up as she goes. find a new one who can hopefully push you ahead for a specialist, and if you want to run further and are okayed, run with a partner so your dad doesn't have to worry. sure, it's all a compromise, but so is life.

megdnoorman

I'm epileptic and have been medicated for it since I was 14. My seizures are controlled now, but if I have so much as a migraine (I get 2-4 a year) I call my dr and he will either fit in an appointment or do a consultation over the phone (sometimes ordering blood work, adjusting prescriptions, etc).

A good neurologist takes any sign of neurological change very seriously. The liver concerns are strange to me because there are many epilepsy medications that can be managed without significant damage to the liver. Having a seizure can cause lasting brain damage. It can cause you to fall, hit your head, break your neck, and even die (in terribly sorry about your family history related to this). It is FAR more important that you control your epilepsy above liver concerns (which, again, your doctor seems to have blown out of proportion), and above any exercise program.

Running with uncontrolled seizures is really dangerous. What if you have a seizure whilst running and alone? Getting knocked on your *kitten* while running, could mean a broken leg or worse.

My recommendations from years of personal experience:

1. Find a new neurologist.
2. Look into and consider the ketogenic diet. It doesn't work for everyone but it seriously reduced the amount and severity of my seizures.
3. When exercising, make sure you are wearing medical alert jewelry. Preferably, never exercise alone (especially with uncontrolled seizures). Join a running group or find a running buddy. If you are going to the gym, work with a trainer or bring a friend. Treadmills and ellipticals can be very dangerous, so I'd avoid those until your seizures are controlled. Swimming is also very dangerous, and epileptics drown every year. Please be safe.

Feel free to friend me and check out my journal if you are interested in the ketogenic diet.