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I think the last time I posted a question was back in July - mom was in rehab as a result of recurring falls related to low sodium. Unfortunately, the falls continued when she got back to ALF. At the end of the August, she fell on her face and head. Again, the issue was low sodium. She was in the hospital for about a week. We put her back in rehab. Within 24 hours, she started having seizures. To control the seizures, she was placed on keppra and zonesamide. It took about two or three days to get the seizures under control. So, she was back in the hospital (a different one) for another week. At that point, we, my family, decided that moving her back to ALF was not a good idea. We didn't know how well she would rebound. So, we transitioned her care into long-term care after rehab. Unfortunately, the rebound is quite different than what we have experienced. After now being in rehab/long-term care, she is now behaving in aggressive ways - hitting staff and cursing. She wanders the halls hollering and screaming. She is having a hard time with place/space and time. When she was experiencing seizures, she was experiencing aphasia. This seems to have gotten better but still having some trouble. Most importantly, her personality has changed quite a bit. The SNF has been trying very hard not to sedate her but when she gets aggressive, hitting people and swinging at people, they have to give her ativan. She's already on xanax. Does anyone have experience with loved ones and epilepsy medication? Does anyone have any experience with a loved one being diagnosed with temporal mesial sclerosis or experience with loved ones having seizures? I've searched several times online for different things, but I just wanted to see if there was someone who has experienced this and, if anything, if there was anything they did that helped? I do try to see her as often as I can - playing music, put up pictures on her wall, bring her treats, etc., but I feel like I'm starting to really run out of tools. Unfortunately, her follow-up appointment with neurology is not until the end of November because of being extremely booked up.

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There is an "extended release form of Keppra" which may help.

That said, IMHO getting with a board certified psychopharmacologist who specializes in epilepsy (seizure disorders) in older adults would be a good thing. Such MDs typicaly are both psychiatrists and neurologists and are expert at brain chemistry; expertise that is key when there is a mixture of things going on as it sounds is the case with your LO.

There is a national ranking of epilepsy centers and going to a "level 4-ranked center" would be optimal. Here is the list by state:

https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/all-epilepsy-center-locations/

Good luck with this.
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Rhetorica: Prayers sent.
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Keppra rages are not unusual, but an elderly person with dementia and low sodium can rage without Keppra. If they've checked her labs (including drug levels) and checked for a urinary infection, I'd advocate for changing her seizure medication. This will take a week or so outside of the hospital. If after the change she is still aggressive, it might be the dementia and move to LTC. BUT given her fragile state, you ABSOLUTELY did the right thing in making sure someone would be with her in case of a seizure or another fall.
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I just looked up keppra and aggression was listed as a “common” side effect. I’m thinking rather than give mom the benzodiazepines Xanax or Ativan when she becomes aggressive, would it be better to give her a long acting benzo like klonopin on a regular schedule to prevent the aggression. Klonopin is a med that was first developed to treat seizures, although I don’t know if it is appropriate for the type of seizures your mom is having.
Are they managing her sodium levels? This would seem more appropriate than giving her heavy duty psych meds. She needs a doctor to look at her whole history and the big picture. I know it’s hard to find someone because (especially in the elderly) they tend to just treat the presenting symptom. I hope you can get some answers.
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Rhetorica Oct 2023
Hi, Lily. They are managing her sodium - 136 based upon labs from last week. She's been on xanax for close to 20 years. We have tried to slowly wean her off from the xanax, but it hasn't been successful. When she was in the hospital for seizures, the neurologist and hospitalist did want her to be slowly weaned off of the xanax and, benzos in general. But since being discharged from the hospital, transitioning into rehab, and transitioning into long-term care, she's been having a really hard time. As far as the PCP at SNF, he hasn't been easy to work with. She had a super awesome PCP at ALF, but she doesn't have a good one at SNF. As far as other options, we are extremely limited. We have tried SSRIS and SSNRIs in the past. All cause her sodium to drop. As far as other medications, they can cause issues related to her heart - congestive heart failure with atrial fibbrillation, so there's been very real hesitancy from past doctors and specialists about it.
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Everything you have written are symptoms of low sodium.

Nausea or vomiting.
Headache, confusion, or fatigue.
Low blood pressure.
Loss of energy.
Muscle weakness, twitching, or cramps.
Seizures or coma.
Restlessness or bad temper

I have read that low sodium is curable. Is the LTC doing what it should be to increase Moms sodium levels? By the time they have seizures, its pretty serious.

"Drinks that can help raise your sodium levels include sports drinks that contain electrolytes, like Gatorade. You can also drink broth or bouillon, which is high in sodium, or tomato juice, which is a good source of sodium."

I would wonder if Mom should go back to the hospital. You have the right to call 911 and have her transported.
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Rhetorica Oct 2023
Hey, JoAnn. Sodium is at 136, which is pretty good considering everything. We've seen it drop to 116, so 136 is good. She's on salt tablets and has been on salt tablets for several years. She's on fluid restriction at SNF. At ALF, they couldn't manage it, which is one of the reasons why she has fallen several times.
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My late husband developed gran mal seizures after having a massive stroke at the age of 48. His seizures just made him really tired and he would sleep for hours after them.
He ended up on 2000 mg. of Depakote and Keppra, along with a lower dose of
Dilantin(don't recall that exact dosage)daily to try and keep them in check.
It didn't cause any aggressive behavior in him thankfully, though late in his life he did develop vascular dementia.
I can't help but wonder if your mom doesn't now have some form of dementia as her behavior sure indicates that she may very well have.
You may want to talk to her neurologist about that when she sees them in November.
I wish you and your mom well.
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Rhetorica Oct 2023
She does have dementia, which is compounding the situation. Prior to the seizures, she had some mild issues related to executive function in addition to spatial issues, but, now, it's extremely magnified.
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