1. < Epilepsy & Seizures
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Dealing w/my mortality, AED side effects. How long can I take AEDs?

Posted by murphymarg59 @murphymarg59, Jan 18 10:33am

I have been taking zonisamide now for almost two months. It is the first AED that I have been able to tolerate. Started at 100 mg for 2 weeks , then 200 mg for about 3 weeks. Now I am 300 mg which according to Dr is the max dosage.
I take it at bedtime. No seizures!
Just curious as do you ever get back to feeling ‘normal’ again. I keep telling myself that I will tolerate how I feel vs having seizures.
Also. I am 84 years old. Had my first seizure 1 year ago what a shock. I have had a total of 5 seizures since. Longest period without a seizure was 4 months which was brought on by stress of putting our dog down. That was in October.
Dealing with my mortality. How long can you take AED? I use to be healthy. Walked 2-3 miles daily. Kept busy. Now can’t drive or be by myself!!!!

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Profile picture for methel
methel | @methel | 9 hours ago
In reply to @jakedduck1 "@murphymarg59 I have been taking seizure meds for 60 years (over 300,000 seizure pills.) For 45..." + (show)
Profile picture for Leonard @jakedduck1

@murphymarg59
I have been taking seizure meds for 60 years (over 300,000 seizure pills.) For 45 years my seizures were uncontrolled. At age 59 one of my meds became unstable and I changed to a new extended-release medicine and my seizures stopped but my EEG, MRI, and neurological exam are all abnormal so no chance of getting off meds.
What type of seizures were you having?
I’m unsure why you can no longer walk or be left alone? I'd recommend you speak to your physician regarding these issues. Physical exercise is beneficial and may help decrease seizures. One in 5 people with epilepsy lives alone. My seizures were so frequent and severe I was unable to live alone. But I have been living alone for 7 years now. It is seldom necessary to go to the hospital because of a seizure. Virtually all seizures will resolve on their own, usually within a few minutes. However, there are exceptions.
I never let my epilepsy control my life. I did what I wanted to do. But naturally there are precautions we should all take.
Showering instead of bathing unless someone is with you, temp control valve to prevent burns in case temperature control is moved to hot position. Knobs instead of levers also help to prevent burns. Cook on back burners. Preferably use microwave.
Take medication faithfully, Get plenty of sleep. Learn seizure triggers if possible. NEVER STOP SEIZURE MEDICATION ABRUPTLY.
I did and was in a coma for 8 months.
Best of luck to you,
Jake

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@jakedduck1

Interested that with the normal Keppra I had seizures, but with the extended release version at the exact same daily dose, the seizures stopped.

Have taken Keppra for 9 years, No seizures for 8 years. (No coffee either. Caffeine is a major seizure trigger for me.)

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Profile picture for Leonard
Leonard | @jakedduck1 | 16 hours ago

@murphymarg59
I have been taking seizure meds for 60 years (over 300,000 seizure pills.) For 45 years my seizures were uncontrolled. At age 59 one of my meds became unstable and I changed to a new extended-release medicine and my seizures stopped but my EEG, MRI, and neurological exam are all abnormal so no chance of getting off meds.
What type of seizures were you having?
I’m unsure why you can no longer walk or be left alone? I'd recommend you speak to your physician regarding these issues. Physical exercise is beneficial and may help decrease seizures. One in 5 people with epilepsy lives alone. My seizures were so frequent and severe I was unable to live alone. But I have been living alone for 7 years now. It is seldom necessary to go to the hospital because of a seizure. Virtually all seizures will resolve on their own, usually within a few minutes. However, there are exceptions.
I never let my epilepsy control my life. I did what I wanted to do. But naturally there are precautions we should all take.
Showering instead of bathing unless someone is with you, temp control valve to prevent burns in case temperature control is moved to hot position. Knobs instead of levers also help to prevent burns. Cook on back burners. Preferably use microwave.
Take medication faithfully, Get plenty of sleep. Learn seizure triggers if possible. NEVER STOP SEIZURE MEDICATION ABRUPTLY.
I did and was in a coma for 8 months.
Best of luck to you,
Jake

REPLY
1 reply
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murphymarg59 | @murphymarg59 | 6 days ago
In reply to @santosha "@murphymarg59 This is great to know! Keep me updated, and if I can be of any..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

@murphymarg59
This is great to know! Keep me updated, and if I can be of any help, please let me know.
Chris

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@santosha
Thank you and I will

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Mentor
Chris Gautier, Volunteer Mentor | @santosha | 6 days ago
In reply to @murphymarg59 "@santosha I have an appointment with Dr next week. Like I said. I will deal with..." + (show)
Profile picture for murphymarg59 @murphymarg59

@santosha
I have an appointment with Dr next week. Like I said. I will deal with side effects if the meds keep me seizure free. 🙏🙏🙏

Jump to this post

@murphymarg59
This is great to know! Keep me updated, and if I can be of any help, please let me know.
Chris

REPLY
1 reply
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murphymarg59 | @murphymarg59 | 6 days ago
In reply to @santosha "Hi @murphymarg59 The start of an epilepsy treatment journey can be really challenging, especially with all..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

Hi @murphymarg59
The start of an epilepsy treatment journey can be really challenging, especially with all the side effects AEDs can cause. I know this from experience.
New AEDs can take some time for our bodies to adjust to. I recently shared an article about this in another discussion that you might find helpful: https://connect.mayoclinic.org/discussion/how-long-does-new-aeds-take-to-adjust/
I'm so happy to hear you've been seizure-free since starting zonisamide! At the same time, it sounds like you're dealing with quite a few side effects—is that right?
Have you had a chance to discuss these side effects with your doctor and understand how long the adjustment period might take?
The early stages of a new AED are usually the most challenging ones, but don't lose hope.
Chris

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@santosha
I have an appointment with Dr next week. Like I said. I will deal with side effects if the meds keep me seizure free. 🙏🙏🙏

REPLY
1 reply
Profile picture for Chris Gautier, Volunteer Mentor
Mentor
Chris Gautier, Volunteer Mentor | @santosha | 6 days ago

Hi @murphymarg59
The start of an epilepsy treatment journey can be really challenging, especially with all the side effects AEDs can cause. I know this from experience.
New AEDs can take some time for our bodies to adjust to. I recently shared an article about this in another discussion that you might find helpful: https://connect.mayoclinic.org/discussion/how-long-does-new-aeds-take-to-adjust/
I'm so happy to hear you've been seizure-free since starting zonisamide! At the same time, it sounds like you're dealing with quite a few side effects—is that right?
Have you had a chance to discuss these side effects with your doctor and understand how long the adjustment period might take?
The early stages of a new AED are usually the most challenging ones, but don't lose hope.
Chris

REPLY
1 reply
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lynnelw | @lynnelw | Jan 18 1:12pm

I am sorry for your troubles.

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