Current medical students with epilepsy

[skm22]

I was diagnosed with epilepsy halfway through my M1 year. I have since struggled with balancing the cognitive effects of meds (they really slow me down and make it difficult to concentrate) with the effects of my seizures. I have tonic clonic seizures with post-ictal amnesia. Typically the seizure+post-ictal confusion lasts about 1 hour all together, but my mind is very fuzzy for the rest of the day so it's basically wasted for studying. I don't know which is worse. Taking the meds is guaranteed to inhibit me from memorizing and concentrating to the extent that the M2 year and Step 1 boards prep requires. Having seizures takes me out for an entire day but it's a gamble that's not guaranteed to happen. I never cease meds altogether, but I've been titrating up and down repeatedly trying to find the right balance. I know I will need to titrate up beyond my seizure threshold after boards, because I can't go on wards with the threat of a tonic-clonic seizure looming. But in the meantime.

Are there any other med students that are dealing with or have dealt with epilepsy during med school? I don't mean to discriminate against premeds or non-allopathic students, but I'm really looking for students in an environment similar to mine. I want to know how other allopathic med students or graduates of med school (in residency or beyond) are dealing with epilepsy. I'm at a loss for how to navigate these decisions; it just feels like I'm stuck between a rock and a hard place.

Was there a combo of meds that allowed you to retain full cognitive function while still protecting against seizures? Other than sufficient sleep, low caffeine, exercise and minimal stress (oxymoron in med school), which are recommendations I already try to maintain. Did you have any accommodations that made a significant difference? I appreciate in advance your replies.

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[Snarkitroph]

I'm an M1 with a seizure disorder from a TBI in my teens. Fortunately, I've been dealing for a little under a decade now and have my meds worked out and have not had a full seizure in about 3 years... and it will happen for you too I hope! However, even when you find meds that work for you that slowed down feeling will always be there to some degree. It gets easier to deal with over time.

It took me about 5 years to get it all worked out, and I definitely understand what you are going through. Until you find a cocktail/dose you can live with, it really does mess with your mental capabilities, but having seizures on a regular basis isn't really an option either. I took a year off during undergrad to work on getting the right combo in a lower stress environment, and I think it helped. I don't know if that is an option that you might consider.

It sounds like you are doing the right things - caffeine, sleep and stress are pretty standard triggers. Its not a bad idea to experiment with diet. I never found any particular food triggers, but even before I had meds worked out, eating a more balanced diet helped.

I don't really have any advice for you, but I'm not sure how many med students there are with seizure disorders so I figured I'd respond. If you ever need someone to talk to/vent at, feel free to message me.

 

[Rendar5]

not sure twhat to tell you in regards to your meds and MS1, but please make sure you get accomodations for sleep schedule in your 3rd, 4th, and residency years. Tell all rotations ahead of time when you get them of yoru condition because you should not bedoing 24 hour shifts and whatnot, if possible.

 

[skm22]

Rendar5- Thanks for your concern. I've been in contact with our Dean of Students and he's aware that there will need to be special accommodations for certain rotations. I can be pretty confident abut not being a surgeon, so for instance with that rotation I'll have to be vigilant about limiting my hours and limiting my role in surgery to observation, etc. I have fears about how that will affect how I am viewed by prospective residency programs but I am frequently reminded that this is a disability and they will take that into account. It's not like epileptics are lazy, just careful. I haven't asked for any other accommodations in my M1-M2 years. The idea of extra exam time has crossed my mind but I fear that I won't get that on Step 1 so I need to be preparing myself for that exam pace now.

 

[Mad Jack]

I'm kind of terrified of the whole residency issue myself. I'm an epileptic with sleep deprivation as a primary trigger. By controlling my sleep schedule and eating right, I've been medication and seizure free for 6 years. I have not mentioned this to the medical school, as I fear asking for special treatment may hurt my chances of scoring good rotations etc. Should I just try to ride it out through OMS 3 and OMS 4 and pray my seizures are gone for good? I just don't know what to do. There's just about nothing worse than waking up in the hospital and asking what happened over and over again for an hour straight while your brain switches back on. It's such a scary experience every time it has happened.

 

[Wordead]

That really, really blows.

Thats about all the contribution I have to this thread.

 

[skm22]

Anyone here lucky enough to have an aura? My friend has absence seizures and gets an aura before them, but I only have TC seizures and have never noticed anything beforehand. I would give so much to have a warning... Just curious about what kind of auras other people have, if any. Also curious exactly which meds folks have tried and what their experience has been (on specific meds/cocktails/doses). Just trying to collect as much information as possible before my next neuro appt.

 

[Rendar5]

I'm kind of terrified of the whole residency issue myself. I'm an epileptic with sleep deprivation as a primary trigger. By controlling my sleep schedule and eating right, I've been medication and seizure free for 6 years. I have not mentioned this to the medical school, as I fear asking for special treatment may hurt my chances of scoring good rotations etc. Should I just try to ride it out through OMS 3 and OMS 4 and pray my seizures are gone for good? I just don't know what to do. There's just about nothing worse than waking up in the hospital and asking what happened over and over again for an hour straight while your brain switches back on. It's such a scary experience every time it has happened.

You really need to tell your school this because if you don't, you will have a crap sleep schedule at times.

 

[Mad Jack]

You really need to tell your school this because if you don't, you will have a crap sleep schedule at times.

I'm thinking about just rolling the dice. If I have one seizure, then I'll ask for accomidations. I'd rather be reckless than not match due to asking for special treatment on my rotations. If I have a seizure, then I guess that's that.

 

[Rendar5]

Well dont say that sleep is a.trigger then if you are intent on doing 24hr.shifts

 

[Mad Jack]

Anyone here lucky enough to have an aura? My friend has absence seizures and gets an aura before them, but I only have TC seizures and have never noticed anything beforehand. I would give so much to have a warning... Just curious about what kind of auras other people have, if any. Also curious exactly which meds folks have tried and what their experience has been (on specific meds/cocktails/doses). Just trying to collect as much information as possible before my next neuro appt.

I have them. The room kind of feels like it's spinning to my left, but it isn't quite like vertigo nor is it like dizziness. Your eyes just kind of track that way and need to be pulled back. But with me, they aren't 100% predictive. Every time I've had a seizure, I've had an aura, but not every aura preceeds a seizure. Usually when I feel one I drink something sugary then go lay down. I don't know if it helps, but it makes me feel a bit better that at least I won't go down from the standing position.

I was on dilantin for a while. It actually made my seizures get worse, plus my gums started growing excessively. I eventually stopped taking my meds against my doctor's advice, and only have had one seizure since (6 years back, my last seizure prior to that was 11 years ago).

 

[Mad Jack]

Well dont say that sleep is a.trigger then if you are intent on doing 24hr.shifts

I think I can handle up to 24 hours. Most of my seizures were after all nighters, usually into the 36-44 hour range. So I *think* I can do it, so long as I don't miss a night of sleep between shifts.

For a while I worked odd hours, I taped tin foil to my windows to keep out any light and took benadryl to make sure that I slept between shifts. Yep, I was tinfoil-on-the-windows scared of seizing.

 

[IslandStyle808]

I'm thinking about just rolling the dice. If I have one seizure, then I'll ask for accomidations. I'd rather be reckless than not match due to asking for special treatment on my rotations. If I have a seizure, then I guess that's that.

There are probably PDs who may do this, but I highly doubt you will not match. If I were in the same situation as yourself, I would still try to set it up anyway. I would be scared to be in a situation of a seizure during a shelf exam or presentations of a case. I don't get seizures or anything, but have had bouts of low serotonin (I can get migraines and stomach aches at times), so I can kind of see where you are coming from. However, you know yourself best and I am just putting another opinion out there.

 

[Wordead]

I'm thinking about just rolling the dice. If I have one seizure, then I'll ask for accomidations. I'd rather be reckless than not match due to asking for special treatment on my rotations. If I have a seizure, then I guess that's that.

Maybe you should reevaluate your priorities, dude.

 

[Mad Jack]

There are probably PDs who may do this, but I highly doubt you will not match. If I were in the same situation as yourself, I would still try to set it up anyway. I would be scared to be in a situation of a seizure during a shelf exam or presentations of a case. I don't get seizures or anything, but have had bouts of low serotonin (I can get migraines and stomach aches at times), so I can kind of see where you are coming from. However, you know yourself best and I am just putting another opinion out there.

The only reason I'm taking such a chance is because I know my body as well as I do. If I start noticing auras, I'll notify my PD immediately. Though, wouldn't a legit medical emergency kind of give you a bit of slack on a shelf exam or presentation?

 

[Mad Jack]

Maybe you should reevaluate your priorities, dude.

If you hear me out on this, it isn't as bad as it sounds. Having one seizure kind of sucks, but it isn't life crippling or anything. Living my whole life based on the fear of having another seizure and limiting my own possibilities when I've been in remission for over five years will diminish my potential and quality of life, all because of a maybe. And if I want to push my limits, med school is the time to do it. As an intern, I will not be the primary decision maker for my patents. If I drop, the resident and team keep on doing their thing. I can then ask for accommodation as it will be necessary. This is something I need to know before I am applying for residencies, as my fields of choice will be limited based upon whether or not I can handle terrible hours as an intern without seizing.

There's totally a method to my madness.

 

[Etorphine]

Don't have an answer just yet, but I wish you success

 

[arewethereyet...]

Hey skm22,

Just saw this. I'm an MS1 and have had temporal lobe epilepsy since I was 12. It was supposedly under control in high school, but looking back I definitely had some auras that I didn't realize were auras. I went to college wanting to go to med school but I was having seizures maybe 2-3 times/week mostly because I was in denial and didn't want to have to deal with it. I ended up in an accident after having a seizure behind the wheel so that was a good wake up call for me. Luckily no one was hurt. Anyways, at that point (junior year of undergrad) I didn't think I could go to med school because sleep deprivation and stress were my two biggest triggers. I tried 8 or 9 different meds in different combos but none of them really worked, so I ended up having surgery almost two years ago, and luckily I've been seizure free since. Still on meds though. I totally understand everything you said, but the reality of it is everyone is different and it SUCKS.

One HUGE thing that I wish I had known is that my seizures originated near speech center and now after countless seizures I have trouble "finding my words". No one except me and my mom really notices it, but it's pretty inconvenient when you're trying to learn drug names and bugs and muscles and all of that. So from my experience you are better off taking the meds and not having the seizures because the more seizures you have the more scar tissue you have and the more you brain gets messed up and the more seizures you have (obviously haven't covered neuro yet). The one thing I've learned in the past few years is to listen to my body and that my health is so much more important than my grades. It doesn't matter how much I know in 20 years if my brain has turned to mush (as my neurologist kindly informed me). If I'm tired at 9 I go to bed at 9.

Also, did your neuro start you out on the older meds? I've found much more success and fewer of the more debilitating side effects in the newer meds. I currently take Keppra and onfi and get 8.5-9 hours of sleep, run regularly and maybe 2/5 days per school week I show up to lecture too tired to get anything from it. I totally understand what you are saying though, I wake up feel great, take my meds and 45 min later feel like I could sleep forever.

As for auras, yea I have them; they are actually kind of cool in that weird way. Sometimes I feel like everything around me sort of melts away and also everything connects and makes sense all at once and then I start having an internal battle with myself as to whether or not I should let myself lose consciousness. It's really hard to describe.

You also asked about meds, the problem as I'm sure you know, is that everyone responds differently. I was started on tegratol but I started metabolizing it too quickly. Then I went to trileptal, then we added zonismide which turned me into a terrible mean nasty person, so then I was on trileptal and keppra. That didn't work so we switched trileptal out for lamictal. Keppra and lamictal were great except lamictal made almost all of my hair fall out. Then we tried keppra and vimpat which seemed to be working pretty well; I was having seizures maybe once every 2 or 3 months, so we added onfi and then I had surgery. As I said, now I'm on keppra and I take onfi at night because my original seizures were nocturnal.

Oh and I don't avoid caffeine. I don't think I could do med school without caffeine. I have 2 or 3 huge cups of coffee in the morning and diet coke at lunch. Ginseng has also helped me a lot when I'm feeling extra tired.

Sorry for the long response with not a lot of advice, hope it helps in some way. If you ever want to talk more about it feel free to PM me.

Best of luck

 

[WhiteapeDO17]

I'm kind of terrified of the whole residency issue myself. I'm an epileptic with sleep deprivation as a primary trigger. By controlling my sleep schedule and eating right, I've been medication and seizure free for 6 years. I have not mentioned this to the medical school, as I fear asking for special treatment may hurt my chances of scoring good rotations etc. Should I just try to ride it out through OMS 3 and OMS 4 and pray my seizures are gone for good? I just don't know what to do. There's just about nothing worse than waking up in the hospital and asking what happened over and over again for an hour straight while your brain switches back on. It's such a scary experience every time it has happened.

Epilepsy and medical school is not fun (I would know, I have JME and am an OMS-I). The biggest thing to keep in mind is that if you think you are beaten, you are. If you go through your entire academic medical career afraid of your condition, you'll only limit yourself. You may need accommodations, and you may not. Go without fear, learn your limits, and ask for help if you need it. Not everyone will be nice to you, and few words hold as negative a connotation as epilepsy in the way of chronic conditions. If you feel you can't do something, talk to your preceptor, let them know. Remember, no one owes you anything, and the world won't feel as sorry for you as you do for yourself. If you can function in life with epilepsy, you can function in medicine with epilepsy. Like everything else, adapt as you go, and don't worry about it before it's time. Take it 1 day at a time.

The most debilitating part of epilepsy for most of us is the fear of debilitation and the worry that accompanies it.

I freaking love medical school and am not afraid of it.

 

[arewethereyet...]

Epilepsy and medical school is not fun (I would know, I have JME and am an OMS-I). The biggest thing to keep in mind is that if you think you are beaten, you are. If you go through your entire academic medical career afraid of your condition, you'll only limit yourself. You may need accommodations, and you may not. Go without fear, learn your limits, and ask for help if you need it. Not everyone will be nice to you, and few words hold as negative a connotation as epilepsy in the way of chronic conditions. If you feel you can't do something, talk to your preceptor, let them know. Remember, no one owes you anything, and the world won't feel as sorry for you as you do for yourself. If you can function in life with epilepsy, you can function in medicine with epilepsy. Like everything else, adapt as you go, and don't worry about it before it's time. Take it 1 day at a time.

The most debilitating part of epilepsy for most of us is the fear of debilitation and the worry that accompanies it.

I freaking love medical school and am not afraid of it.

Man, I can't even tell you how perfect timing that was for me. I've have been having a sh**ty sh**ty few days, I really needed someone else that gets it to say that and remind me why I'm here. Thank you so much.

To the OP, nothing has helped me more with epilepsy than talking about it and proving that people's generalizations about epilepsy are wrong.

 

[alina_s]

I wouldn't go so far as to say that any medication is guaranteed to interfere with learning; I made it through undergrad medicated and even phenobarbital, which made me snooze through the winter break when I started it, wasn't as bad for learning as a seizure day. I second arewethereyet's comments about seizures and language, and also the effects of repeat seziures. My parents were freaked out about medications at the beginning, but I've wondered how much I kindled my seizure centers while trying to minimize medications. I was lucky; I'd had surgery and was off meds by the time I started medical school, and I'm impressed that anyone is trying to get through while still having seizures. I also agree with arewethereyet's comments about auras; once in a while, they gave me the chance to extract myself from a setting where it would have been embarrassing to seize, but most of the time, it was a split second to realize I was about to lose control, but not enough to do anything. I would never count on auras as giving me enough time to preserve my own and others' safety and at least the attendings have to know.

 

[masaraksh]

I usually watch pathoma in addition to our lecture material, make outlines of the lectures, make minimal flashcards for things I need to burn into my brain, and then work on a few practice problems