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My husband (88) has Vascular Dementia and is also having Myoclonic Seizures which cause a sudden, without warning full body jerk. These are happening during sleep as well as while awake, causing multiple falls. Is anyone familiar with this or experienced with their LO?

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My late husband after having a massive stroke at the age of 48 developed Grand-mal seizures about a year later.
With 3 different seizure medications, he for the most part was able to keep them under control, although every now and again one would sneak through.
And as he too later developed vascular dementia, his seizures seemed to increase and he was falling a lot not only from the seizures but the dementia itself as part of VD is unsteady gait.
His neurologist had to increase his seizure medication once again. And sadly my husband even had seizures during his dying process, when he could no longer swallow his seizure medication and the liquid medication hospice gave me really didn't seem to help at all.
They're no fun that's for sure. I hope your husband has a good neurologist that specializes in seizures.
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MurphyOr1954 May 2023
Thank you❤️
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Just a thought - because they are happening during the day and are causing falls it might be time to consider using a wheelchair.
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MurphyOr1954 May 2023
Thank you. It seems every day there are new symptoms, he’s having hallucinations as well as repetitive behaviors like folding and unfolding his lap blanket over and over until I ask him if he needs help. He stops then, but doesn’t remember he was doing it. He also has a perception that someone is in the room with us? He said he doesn’t see them, but rather senses that the person is there. My heart shatters more every day as I watch this cruel disease take my sweetheart, best friend and forever love. 😥
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This happened a few times to my Husband. One time it was when the Hospice Nurse was there. I had just been trying to describe what had happened the day before.
She said that it appeared to be a Myoclonic Seizure.
At the time this started to happen my Husband was either confined to his wheelchair or the bed so he was not a fall risk.
He was on pureed foods, thickened liquids and not eating or drinking much. I was careful when feeding him so choking was not a real concern.
I just monitored and since I kept a log daily I just wrote down each episode.
(He had "officially" been diagnosed with Alzheimer's but I also suspect he also had Vascular Dementia due to the way he declined)
I hate to say it but it might be time to switch to a wheelchair. A fall that can break a hip, leg, arm is not something you want to deal with.
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MurphyOr1954 May 2023
Thank you ❤️
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From what I read, these can be controlled by epilepsy medications. Usually happens upon waking up. I would talk to his PCP about this but would see a neurologist for overseeing his medication.

Everything you have written comes with Dementia. You really do need to see a Neurologist for all of his symptoms. PCP knows a little about everything, and a lot about nothing.
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My mom had seizures. They were able to be controlled with meds. Please see a neurologist to get accurate information about his particular seizures.
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I was severely crippled by the Fluoroquinolone antibiotic Cipro in 2008, affecting not only musculoskeletal areas but also my central nervous system. I had severe Myoclonal 'jerks' for years, sometimes just one limb, sometimes a whole side of my body at once, when lying down and sometimes when up and about. They are scary, but not painful. I'm so sorry these are causing your husband to fall; my recommendation would be to have him use at least a cane or even a walker when getting around to help stabilize him since these 'seizures' can come on without warning. No doctors had any remedies for me, perhaps because even the Fluoroquinolone Toxicity Syndrome is still not fully understood by the medical profession, sadly. I was eventually taking Gabapentin, which is often used for folks with spastic conditions; I was given it for the constant nerve pain I had, and it did seem to quiet the Myoclonal spasms. I still get spasms, even had one last evening, but they are now infrequent and a bit 'quieter' in severity. They are like the 'twitches' we can experience when falling asleep, only more forceful and jarring to the whole body.
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A primary care provider (MD, RN, APRN, PA, etc...) should refer your family member to a Neurologist (Board Certified if Available) who will expand upon the history and physical findings of the primary care provider. The Neurologist will likely want to initially obtain an Electro-Encephlo-Gram (EEG) as part of the initial evaluation to assess the neurological location of the seizure and what may trigger the onset of seizure activity. That is my advice as to what should be initiated.
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a transport wheel chair is not as wide as regular one is. unsure of measurements are.
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bowgirl May 2023
transport chairs come in several widths. I bought one, just 14 lbs when I broke my ankle in Dec. LOVED it for the 2 months I used in the downstairs of my 1895 house.
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My sister had a stroke of some sort — she refused to take the meds so we had to get permission from a judge to crush them in her food — she’s a.most back to normal as long as she takes the meds. She’s in an assisted living — loves it there but hates her sisters who put her there . We are all 63 and older and can barely take care of ourselves — but she wants to live with one of us . We did what we thought was best. She speaks to none of us — and she refuses to see a neurologist —. Recommended by her physician. She refuses to believe q she has an issue — even though we have shown her videos of her insane outbursts. She was diagnosed with dementia she can’t remember having a CT 🤷‍♀️. Yet there are pictures of her sitting with a sister and her daughter who took her to the ER — the day she was trying to convince us all that we now need a high school diploma to shop at a grocery store?! Among other crazy comments?!

Our mom had dementia but no to the extent of my sister. She didn’t want a wheelchair or a Walker but she was always on the floor! So finally I got her a Walker and she was thrilled! They don’t want to admit they’ve reached that point —. Just get it and when he finds how much better life is with one he will be happy. As often as my mom fell I’m amazed she didn’t ever break a bone.
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I’ve read somewhere that Myoclonic jerks happen more when the muscles relax, as when you are dozing off or even spacing out - as my medicine makes me do. Mine’s caused by high dose steroids, necessary at the time. Mine are in my hands and make me jerk things across the room, highly annoying when it’s liquid lol.
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Santalynn May 2023
I can relate and I agree about your experience of them!
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MurphyOr1954: Although I am not familiar with myoclonic seizures, my DD (Dear Daughter's) FIL suffered from Vascular Dementia and then had a 7 cm (yes, correct) hemorrhagic stroke. Please make your Dear Husband's neurologist aware of this.
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When dealing with seizures it’s important to understand that he may not not know when their coming on at all . He may have a headache before & be forgetful ( but dementia does that already ) . He won’t remember that his had one , unless you tell him , and during these episodes he won’t even know who you are or his family or his own name , he’ll just stare back at you blankly. Or right through you like your not their . He’ll end up with a massive migraine & have to sleep & be totally unaware of his surroundings & what he can & can’t do . Best to get him diagnosed & on some medication asap . Once it the right medication the seizures will slow down & only happen occasionally. A lot of people that have had strokes or dementia end up having some seizures . Their scary to watch as they seem to go on forever . Any longer than 5 minutes it’s important to call an ambulance. He should have an EEG & a MRI . To find out where the in the brain is the problem , some can be operated on to remove & some can’t .
Ive been an Epileptic since I was 11 & I’m now 55 , so naturally it’s hard for people to understand unless you’ve had seizures yourself . Hope my insight helps .
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My husband, age 77 with Parkinson's and mild dementia suffered one last December in the car. I was driving. He ended up hospitalized for 2 weeks. Determined cause probably micro bleeds in his brain from blood thinners. They stopped the blood thinner and inserted an IVC filter. He has been on Keppra since then. No more seizures at this point.
Have his drs determined the cause? Very scary stuff..
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Yes, I have some experience with them. The most important thing is to get on an anti-seizure medicine ASAP. Like Keppra.
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The myoclonic jerks helped my daughter's neurologist diagnose her seizure activity when she was a baby. She has been on seizure medication ever since, and she is now in her 30's. Seizure activity is different for everyone. Her doctor assured me that you can't walk and have a seizure, until he observed it! Find a good neurologist. Document your husband's behaviors, so you can report as much as possible to the doctor. Taking a short video, using your cell phone, will help the doctor observe the symptoms. Good luck.
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