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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Build up energy levels?

A MyEpilepsyTeam Member asked a question 💭
Wigan, UK

Hi guys. I'm having uncontrolled seizures on a regular basis, multiple times a week. Tonic clonic in my sleep and focal seizures when I'm awake. Awaiting appointment with consultant. I take Levetiracetam 1500mg BD. Amitriptyline 20mg at night and 10mg Clobazam at night.

Just wondering if anyone has found a way to increase energy levels as I have a very active son and I genuinely can't keep up. I put the washing on or play with my son for an hour then I'm ready for bed to sleep for a week. I take… read more

January 12
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Reactions
A MyEpilepsyTeam Member

CIRE seizures be doing same for me .. they be Cold Induced Reflex Epilepsy .. another rare type .. anything cold be triggering them ., temps ., cold food or drinks ., going from heat to AC in summer ., even shower when run out of warm water .. at least they just be causing shakes and chills ., not like my ictal asystole seizures that be stopping my heart .. for which my wife Jen bring me back with CPR ., stay strrong brother and sister warriers .. William and Jen .. Michigan friends💜💙🕊

January 14
A MyEpilepsyTeam Member

It’s hard to have energy, when the seizures are draining your energy .

In the past I use to have Cluster seizures. The ones that were back to back with each other , would drain me not only exhaustion , but also knock me out ( sleep ) into the next day.

January 12
A MyEpilepsyTeam Member

Its probably going to be hard if your having constant uncontrolled seizures because it would mean you would have sustained periods of post ictal, in other words you would be very tired, feel very rundown and have long periods with no energy. I had it happen after I had my TC. I think the way you would probably need to look at thins is how to you recover from post ictal periods quicker? Or better?

January 12
MyEpilepsyTeam

How can you build up energy levels when experiencing frequent seizures?

Your exhaustion is completely understandable. Frequent seizures, especially tonic-clonic seizures during sleep, can severely drain your energy. The recovery period after seizures causes intense fatigue, and nocturnal seizures disrupt sleep patterns Show Full Answer

How can you build up energy levels when experiencing frequent seizures?

Your exhaustion is completely understandable. Frequent seizures, especially tonic-clonic seizures during sleep, can severely drain your energy. The recovery period after seizures causes intense fatigue, and nocturnal seizures disrupt sleep patterns, making daytime fatigue even worse.

Here are some strategies that may help:

Nutrition and Hydration:
- Eat regular, balanced meals high in protein to maintain energy levels
- Stay well-hydrated throughout the day
- Avoid skipping breakfast - a MyEpilepsyTeam member found eating breakfast every morning helped boost their energy
- Limit or avoid caffeine and alcohol, as these can interact with anti-seizure medications and potentially trigger seizures

Sleep Quality:
- Prioritize good sleep hygiene by going to bed and waking at consistent times
- Avoid screens and bright lights before bed
- Keep your bedroom cool and comfortable
- Finish any exercise at least three hours before bedtime Track Your Patterns:
Keep a seizure diary noting your seizure activity, sleep quality, medication timing, and energy levels. This can help you and your healthcare team identify patterns and adjust treatment.

Manage Stress:
Stress can trigger seizures and worsen fatigue. Consider gentle activities like yoga, which a MyEpilepsyTeam member found helpful for rest and stress relief.

Medication Considerations:
Some anti-seizure medications can cause fatigue as a side effect. Since you're already waiting to hear from your epilepsy nurse, they may be able to review whether medication adjustments could help.

It's important to remember that with uncontrolled seizures happening multiple times weekly, fatigue is expected. Your body is working incredibly hard. Be patient with yourself while you await your consultant appointment - getting seizures under better control will likely be the most effective way to improve your energy levels long-term.

January 12
A MyEpilepsyTeam Member

Good post, I agree with the ai mentioned about it is different per person and I have had a few times but it's more stable than before and I am ok with it currently, but do get other people's opinions here which is ok with, then go to your doc about the situation you have at hand and go from there about it and good luck with your outcome with it, hang in there and try to stay pos, I do and so can you,

January 12 (edited)

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