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Dementia/Seizure/Medication sensitivities/Behaviors

Posted by macbeth @macbeth, Jan 20, 2017

To those of you caring for a loved one with dementia:

How do you deal with anxiety, agitation, hyperactivity? My husband has also begun having nocturnal tonic-clonic seizures, which scare me and too often I stay awake most of the night, trying to place him in positions that will free his breathing, to avoid seizures. He has become very sensitive to medications, and, it seems that if there is a bad side effect, he will have one or more. A week ago, he was prescribed sertraline for the anxiety/agitation/hyperactivity. Everything seemed fine until the day before yesterday, when he started to seem very drowsy. He was more difficult to wake, needed more sleep, and even when I moved him at night, no matter how I placed him, his breathing was labored and he stopped breathing often. He has sleep apnea and uses a CPAP machine, but that doesn't work well for a dementia patient who often gets up at night and forgets to put it back on when returning to bed, or forgets to take it off when getting up, and it all ends up on the floor in the middle of the night. Anyway, this morning he had two grand mal seizures in the early morning hours, two hours apart. That has never happened before. So, no more sertraline. He had recently been prescribed anti-seizure medication - levetiracetam, but I have not yet started him on it because it, too, can cause drowsiness and more confusion. He is still not back to his normal situation since the seizures this morning - more confusion and more hyperactive than ever. He will not sit still for more than a minute or two at a time - for several hours now.

Are any of you familiar with dementia patients with seizures? Medications?

I think that half of the problem is my own fear and anxiety. I try to stay positive, but it is becoming more and more difficult.

Macbeth

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 22, 2017

Hi Macbeth, it is not surprising that you are fearful and anxious about your husband having seizures in addition to the ever-changing behaviors that dementia causes. I'm tagging @matermiracle @dawn_giacabazi and @sall who have spoken about tonic-clonic seizures and/or nocturnal seizures before on Connect. Hopefully they will be able to offer some insight that might be helpful.

Did you see this conversation with @tavi @IndianaScott and @dgallen called Transitions..... Medications for Behavioral Symptoms http://mayocl.in/2h6TeIz

REPLY
Debby - @tavi | @tavi | Jan 23, 2017

Thinking of you Macbeth -- I'm sorry I don't have anything to share or answers to your questions and know this must be very frightening. Trying to do the best we can in the deep of night can be very lonely and takes a lot of courage. The mix of medications that can be prescribed for our loved ones symptoms is very confusing -- it sounds like there are major changes going on with your husband's meds -- I do hope you have an experienced physician / home health nurse working with you and responding to your concerns. In the past year, my husband has had several different meds prescribed -- finally last October he started on a regime that has worked well the past 3 months. But it was only after I finally found a physician who was focused on elderly dementia and was experienced with the potential med interactions that we were successful. Wishing you courage and a few moments today when you can care for yourself too.

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2 replies
macbeth | @macbeth | Jan 23, 2017
In reply to @tavi "Thinking of you Macbeth -- I'm sorry I don't have anything to share or answers to..." + (show)
@tavi

Thinking of you Macbeth -- I'm sorry I don't have anything to share or answers to your questions and know this must be very frightening. Trying to do the best we can in the deep of night can be very lonely and takes a lot of courage. The mix of medications that can be prescribed for our loved ones symptoms is very confusing -- it sounds like there are major changes going on with your husband's meds -- I do hope you have an experienced physician / home health nurse working with you and responding to your concerns. In the past year, my husband has had several different meds prescribed -- finally last October he started on a regime that has worked well the past 3 months. But it was only after I finally found a physician who was focused on elderly dementia and was experienced with the potential med interactions that we were successful. Wishing you courage and a few moments today when you can care for yourself too.

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@tavi

Thank you. I think that's part of the problem - too many doctors in too many places, none very effective or interested, and no gerontologist. I will have to work on that. Thank you for support. It means a lot.

Macbeth

REPLY
Debby - @tavi | @tavi | Jan 23, 2017
In reply to @tavi "Thinking of you Macbeth -- I'm sorry I don't have anything to share or answers to..." + (show)
@tavi

Thinking of you Macbeth -- I'm sorry I don't have anything to share or answers to your questions and know this must be very frightening. Trying to do the best we can in the deep of night can be very lonely and takes a lot of courage. The mix of medications that can be prescribed for our loved ones symptoms is very confusing -- it sounds like there are major changes going on with your husband's meds -- I do hope you have an experienced physician / home health nurse working with you and responding to your concerns. In the past year, my husband has had several different meds prescribed -- finally last October he started on a regime that has worked well the past 3 months. But it was only after I finally found a physician who was focused on elderly dementia and was experienced with the potential med interactions that we were successful. Wishing you courage and a few moments today when you can care for yourself too.

Jump to this post

I was able to find a practice here in Portland, Housecall Providers - they come directly to our home and are very responsive via phone. My husband's PCP's average client age is 80.... which means a lot to her experience and knowledge about the issues we are dealing with. It's a great model - not sure if there are similar practices in your area but finding a gerontologist would be a great start.

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