Epilepsy and change of routine.

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davidprior8

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Hello all.

Diagnosed 12 years ago. Chronotype/circadian rhythm are big factors for me to manage. If I stray from my sleep patterns my seizures can increase.

What I’ve also noticed is routine. Generally routine seems to play a big part in managing my epilepsy. I get up the same time every day, go to work at the same time, work the same shift, come home the same time. If I stray from that shift pattern or do something in the evenings that I don’t usually do my body doesn’t seem to cope with that very well. I imagine it is to chronotype but I’m unsure and nobody medical has ever confirmed this. I’m told routine is important but I think they are talking about med taking and not missing doses. When I try and explain my issue with sudden changes to routine they look at me as though I’m mad.

Does anybody else struggle when their daily routine is messed around with? I am very much a morning to early afternoon person but by the early evenings if I am feeling tired, which I usually am any sort of change in my routine sets me back.

I think I’m just looking for someone who is in a similar boat to me.

Thanks.
 
Hello. I've had epilepsy since childhood--diagnosed at age 14. I believe disruptions in a person's sleep/wake cycle DO affect their sezures. I have simple & complex partial seizures, and currently take 500mg Zonisamide & 250mg Xcopri/day. I have also noticed that when my sleep/wake schedule gets messed up too much, it can trigger seizures, the same way stress or tension often do. This can happen whether I've missed a dose or not. I am a deep sleeper & early riser--I have been since I was in school, averaging 6-6.5 hours/night. I am so accustomed to the AEDs "drowsiness" side effects that they DON"T affect me.

Recently, for example, we had to go to 2 or 3 family functions on consecutive nights. Because I was constantly up far past the time I normally would go to sleep, I had a complex partial seizure about 2 or 3 days later.
 
Thank you for your reply,

Recently, for example, we had to go to 2 or 3 family functions on consecutive nights. Because I was constantly up far past the time I normally would go to sleep, I had a complex partial seizure about 2 or 3 days later.

This ties in with me. If I differ my evening arrangements my body doesn't like the change of routine.

I thought I was alone.

Thank you.
 
Hi davidprior8.

Welcome to CWE forum! I was told by my Epileptologst that lack of sleep and stress are the 2 main things that
can trigger seizures. I've had both absence and complex partial along with simple partial seizures for 52 yrs. but
I had surgery to help reduce my seizures.

A few yrs. ago I would wake up in the morning and feel exhausted after a good nights sleep and I was wiped out
the entire day. Then I would start to have seizures right before I went to bed or early in the morning. I let my
Epileptologist know about it and she did a sleep study, e.e.g. and e.k.g. on me around the clock and I was on video.
It was then that I found out I had sleep apnea and this in turn caused me to have seizures 1-2 hrs. before I would
even wake up and that's why I was so tired. The Dr. calls them myoclonic seizures. If you haven't had a sleep study
done maybe you should talk to your neuro. and get one done you may be having the same problem as I did, but once
I got on vimpat those seizures stopped. Also when a person has any heart problems that can also lead to seizures.
I wish you only the best and May God Bless You,

Sue
 
Hi dp8, welcome to CWE. 👋

My wife has daily routines for sleep, eating (adhering to a low sugar/simple carb diet as well as eating on a regular schedule) and taking her meds.
 
What's annoying is that other people often just do not understand this fact. Constant or extreme changes in our daily patterns or schedules may bring on seizures even if we've taken all our medications. I know, since it's happened to me.
 
Sabbo said:
What's annoying is that other people often just do not understand this fact. Constant or extreme changes in our daily patterns or schedules may bring on seizures even if we've taken all our medications. I know, since it's happened to me.
Click to expand...
I'm tired of people thinking taking a pill is enough, cured. As if its that easy!
 
I don't think DST is an issue. For DST, you change your clock twice a year. After doing so once, the time remains the same for months, until switched again. When one goes on a vacation, however, they must adapt to new time zones very quickly, & often for very short periods of time. If the DST time change IS so disruptive for a person, maybe they should remain within one time zone all their life--including any vacations.

I live in the Central time zone, by Chicago. Last summer, we drove to visit my older son in California, so we travelled from the Central Time Zone to the Pacific Time Zone. Our trip was 14 days, and I had no issues from the time changes.
Without DST (in midsummer) dawn in Chicago would be around 2:30 am, meaning sunrise would be around 3:30am. I know, as I get up for my morning prayers around 4am. During winter, in standard time, dawn is around 6am, & the sunrise is close to 7:30!
 
Sabbo said:
I don't think DST is an issue. For DST, you change your clock twice a year. After doing so once, the time remains the same for months, until switched again. When one goes on a vacation, however, they must adapt to new time zones very quickly, & often for very short periods of time. If the DST time change IS so disruptive for a person, maybe they should remain within one time zone all their life--including any vacations.
Click to expand...
It might only be twice a year, but it does take a week or two to get over and get used to it. Meanwhile your sleep gets messed up which is a major contributor to seizures. You're waking up an hour earlier than you're used to. Or you're used to getting that hour of sleep that magically disappeared in the middle of the night. On top of this, your stomach is confused and you're not sure you need to be hungry or not since your schedule is off. Usually you eat at 7 AM and take your meds. Well, now it's already 8 AM DST and you haven't eaten yet because you weren't hungry (or slept in). That goes for Standard Time as well (ie I’m used to eating at 7 AM, but now my body is used to DST and now I'm waking up starving at 6 AM). Changing the clock is what disrupts the routine. Add appointments, work and/or meeting someone at a specific time during the week and it's no different than going on a vacation, which I agree, isn't easy either. Especially a cruise where you're always changing and you better make sure you make the ship before it leaves you after your excursion.
 
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