What is the link between seizures and dementia?

There are some symptoms of dementia that are more commonly known, such as memory loss. Seizures are a less common symptom of dementia that are not as understood. Hear from one of our dementia researchers who has been studying seizures in people with the condition.

How common are epileptic seizures in dementia? Who is most at risk of having them? What do these seizures look like? What effect do they have on how someone’s memory changes over time?

These are the questions that I have been researching since starting my PhD in 2016. I'm a student funded by Alzheimer’s Society as part of the University of Exeter doctoral training centre.

What do we know about seizures and dementia?

People with dementia are at risk of having epileptic seizures. We’ve known this for a long time – it was described by Alzheimer himself in 1911.

However, how common they are remains unclear. This is because epileptic seizures can often be subtle. 

There are two common types of epileptic seizures:

Generalised tonic-clonic seizures

Most of us are familiar with the kind of epileptic seizures we see on TV or in films. People become unresponsive, they fall to the ground, become stiff and their whole-body shakes in a convulsion.

Generalised tonic-clonic seizures are hard to miss. But this is not what most epileptic seizures look like. 

Focal onset seizures

Most epileptic seizures in people with dementia are known as focal onset seizures. These can involve brief periods of increased amnesia or unresponsiveness. We see involuntary repeating movements, often of the hands and arms, or of the face (chewing, lip-smacking or swallowing).

Understandably, the latter are more easily missed, especially as the person affected will often quickly be back to normal afterwards..

Who might be affected by seizures?

For a long time, researchers believed epileptic seizures occurred only in people who had long been diagnosed with dementia. It was thought they were a reflection of how much the brain had changed and shrunk because of it. 

However, more recent research has suggested that seizures can occur early-on in Alzheimer’s disease. In some people, seizures may happen even before memory problems become apparent.

As part of my research, I recruited people from the local memory clinic here in Exeter. We asked them questions about epilepsy.

It quickly became clear that most people don’t know that having dementia, particularly Alzheimer’s disease, can increase your risk of seizures.

In our group, around 1 in 8 patients with dementia described episodes which we believe could have been epileptic seizures.

We interviewed our participants one year later and found that those who had described having had epileptic seizures previously performed less well on memory tests than those who showed no evidence of epilepsy. 

Why do people with dementia develop seizures? 

Ultimately, anything that changes the structure of the brain can cause seizures. 

This happens for some people after a stroke, a head injury, or with a brain infection like meningitis. A similar problem is happening in the brain in dementia. As cells in the brain die and the brain shrinks this can lead to epilepsy. 

In addition, we know that two proteins that build up in the brain of people with Alzheimer’s disease – amyloid and tau – affect how the brain’s nerve cells communicate with each other.

Sometimes these nerve cells can become 'hyper-excitable', meaning they can behave uncontrollably, causing epileptic seizures.

Can seizures be managed in people with dementia?

There is good news. There are medications that are effective at reducing, and hopefully stopping, epileptic seizures.

If you think that you, or someone you know with dementia may be having epileptic seizures you should tell a doctor. They might want to perform some extra tests, and may want to start some extra medications to treat this problem.

What we don’t know yet is whether starting treatment for epilepsy might help to slow down dementia and whether it might help keep people’s memory function better for longer.

We have learned so much about the brain – but there is still so much to discover.

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My husband age 77 has had vascular dementia for 8 years , he has seizures that last several hours , he was hospitalised for ten days and given tests, the hospital refers to them as episodes and tell me these will continue and not to bother calling 999 in future but he is unresponsive during these episodes , one day it lasted for six hours can anyone tell me if this is normal for him

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Hello Suzanne,

Thanks for your comment. These episodes must be concerning. Seizures and dementia is a complex area, so we'd really recommend that you and your husband speak to the GP.

For dementia information, advice and support, you can speak to our dementia advisers through our Dementia Connect support line on 0333 150 3456. They're available seven days a week: https://www.alzheimers.org.uk/dementia-connect-support-line

Some people also find it helps to talk with others who have gone through or are going through similar experiences. If you think this would help, you can visit our online community, Talking Point, for peer support: https://forum.alzheimers.org.uk/ It's free and open day or night.

Hope this helps for now, Suzanne.

Alzheimer's Society blog team

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My mom was in the later stages of Alzheimer’s one night I heard a yelp in her room and I ran in to see what was wrong. She was having a tonic seizure. I called 911 and they talked me through it. I had no idea what to do. The ambulance gave her oxygen and then took her to the ER where she had an X-ray, CAT scan, and urine and blood tests. They told me everything was fine and they were going to send us home with seizure medicine. But the neurologist at another hospital wanted to do an EEG and MRI to find the root and cause of the seizure. So we went. There she had a short EEG test that showed nothing. Twelve hours after her first seizure while waiting for the MRI she had a second tonic seizure which stopped her ability to breath. Then they put her on a ventilator, seizure meds and a 24 hour EEG. After the EEG was removed we waited the remainder of the day for a MRI but it never happened. That night they took her off sedation and she woke up gagging on the ventilator every ten seconds. She looked miserable it was heart breaking. But when she was asleep she was fine. That night they did a test to see if she was strong enough to breath on her own and briefly turned off the ventilator for an hour and a half but she was not able. She spent a day miserable when awake gagging every ten seconds on the ventilator (still off sedation) In the afternoon they tested her lungs again without the vent for twenty minutes and her lungs still were not strong enough to breath on her own. They took her off the vent and she weakly was breathing for three days. The doctor said she wasn’t strong enough to breath on her own outside of the hospital, for us to take her home. Those last three days she was put on morphine so she would feel no pain as she slowly passed away. They also put her on something to stop her mouth secretions (and prevent the rattle-or gurgling),
It was hard to watch. I wish I knew the effects of ventilators on those with neurological issues when deciding on her end of life code and DNR plan. Waiting for the MRI while not on seizure meds may have lead to the second seizure that ended her life. I was reading this blog at the hospital while going through this, I was not sure what caused her seizure, reading this blog really helped. Thank you.

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Evah, we are so sorry to learn about the loss of your mother.

Some people affected by dementia often find it helps to speak with others who may have experienced similar things. Our online community, Talking Point, is free to use and open day or night: https://forum.alzheimers.org.uk/ It's always a great way to find emotional support, if you need it during this difficult time.

We hope this helps for now.

Alzheimer's Society blog team

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It's such a relief to hear that epileptic seizures are not uncommon in dementia patients. My 69-year-old husband had his first seizure this morning and it matched a lot of the symptoms described here. he was in bed, but his face turned bright red, his eyes went fixed and he shook for about 2 minutes. Then, he had very labored breathing for another 20 minutes. Then he went to sleep. I was afraid he was having a stroke and I have been watching him for stroke symptoms all day but he seems to have completely recovered to his usual self. He was diagnosed with frontal lobe dementia about 4 years ago. He doesn't talk, walk without assistance, and is completely incontinent. But, he keeps trying to say things and he laughs and sings. I thought it was the end this morning but I am really grateful to have him back. I almost called emergency services but didn't. I thought why put him through that misery and what could they do for him anyway? It wasn't like they could prevent more brain damage. (Sigh). Thanks for being here and sharing. I feel much better now.

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So sorry you are going through what you are going through . It’s such an unforgiving condition . It was not until
Today that I understood seizures were a common factor with dementia . Someone that I was once close to suffered a seizure this afternoon . He has a dementia diagnosis very late stages now with no plans to treat him medically with the underlying’s . I hope the rest of your time with your husband is kind to you . Good luck .

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Hi what you said resonates so much with me. My dad has had dementia for 6 years and has just recently been diagnosed with it being severe. On Easter we thought he was having a stroke as his gaze was fixed and he couldn’t move talk, respond nothing. This is when we were told of the progression. Now he’s having these seizures and they’re so scary. VA told us there’s nothing else they can do. I don’t believe it! He was walking, talking, I mean he was completely independent with motor skills he was continent he was fine per say he was high functioning with dementia. VA has been so quick to put him on hospice but despite the seizures my dad is coming back around he’s eating like normal he recognizes me, mom, my brother he’s even hopping up saying “I got to piss” and he rushes to the toilet. I’m lost and don’t agree with hospice.

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Hi Nicole,

Thanks for your comment - we're really sorry to hear about this situation with your dad. This sounds really difficult for you both.

You may find it helpful to talk to one of our dementia advisers who can learn more about your situation and give you information, advice and support. To speak with an adviser, please call 0333 150 3456 to contact our Dementia Connect support line. More details about this (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line

Hope this is helpful, Nicole.

Thanks,
Alzheimer’s Society blog team

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My mother who is 89 has had milder spasms which started in 2017. However since December 2020, they are very frequent. She does not get any for a week and then gets them constantly for a week. Last week it was an epiliptic seizure the head went back, the rolling eyes, body stiffness, foaming mouth and then it was over. Now she had none for 5 days and today has started again. Had at least a dozen since morning. Doctor is contacting me next week and i am going to ask if she can prescribe something.

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I have a friend who started having focal epilepsy about 18 months ago, he is 69 years old. His mother had dementia but not aware of her having any seizure. He has been told that his white matter is more than normal after a brain scan. It’s very scary for him because when these episodes happen he just stares and when they subside he doesn’t know where he is or what’s happened. It’s like he loses the prior hour plus the time of the seizure. At this time he is still working, driving and taking medication for the seizures, but he has begun to think he should quit his job and stay home. He has no other health issues and takes no other meds. Is the the onset of dementia or Alzheimer’s ?

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Hi Jean,

Thanks for getting in touch, and sorry to hear that this has been a scary time for you and your friend.

Seizures and dementia is a complex area, so it's difficult to comment without knowing more about your friend's situation. We'd really recommend that your friend speaks to their GP about the concerns, who may then refer them onwards to memory services if it's appropriate.

As mentioned before, the links between epilepsy and dementia are complex and not well understood, but it is possible to experience memory loss purely as a result of an epileptic episode, not because of any underlying neurodegenerative disease:

The charity Epilepsy action has more information on this: https://www.epilepsy.org.uk/info/memory

Although some loss of memory is to be expected as we get older, if your friend has concerns related to their epilepsy or memory then their GP should be able to provide the right support.

If you'd like to discuss this more, you can also call our Dementia Connect support line on 0333 150 3456. A dementia adviser will be able to give you more information, advice and support: https://www.alzheimers.org.uk/dementia-connect-support-line

Hope this helps, Jean.

Alzheimer's Society blog team

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Mum has lived with me now for 2 years since dad passed away from cancer. Dad refused a lot of medicine because he had a very sharp mind and when given medication, he was like a zombie and was back to normal sharpness when not taking it. Mum has dementia and is 90 years old. We did try medication at first and noticed the same thing, she was like a zombie, unable to get up etc. We stopped it. She has shaking fits every couple of months, her eyes roll, she feels faint so you know they are coming. At first I panicked, called the ambulance but as she was fine within minutes and early on the call handler told me it was probably a mini stroke in the brain, and then my doctor said they will be quite frequent. So I don't panic anymore, I make sure she is sitting comfortably, she rests and after a while, eats, drinks and is back to normal. This morning however, she was standing when one occurred. I was close by luckily and held her as she shook, she was very heavy as she was in a floppy state. I managed to sit her down and contemplated an ambulance while the phone to the doctor was ringing out. Then I stopped and observed. The doctor's was still ringing out so I calmed myself, put the phone down. At this moment she is well, has eaten and is back to normal. She is walking around and talking to me as she always does. She has a dementia review with the doctor in a couple of weeks. I can only presume that a little bit of her brain is dying at each attack.

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My father who is 86 and has dementia has had his 3rd seizure this morning in 6 months. On getting up in the morning each time he has gone rigid with flailing arms, a grey colour, rolling eyes and foaming at the mouth. They last for under 2 minutes and are followed by heavy, laboured breathing. Paramedics have been called and twice he has been admitted to hospital due low oxygen with chest infections and given antibiotics. Today he has not been hospitalised but is now on antibiotics and there is a suggestion that Bacteremia could be the cause as bacterial infection in blood is apparently common in elderly people. Seems like we have not got to the bottom of it yet and a worrying outcome of dementia, as he has never had epilepsy or been hospitalised at all in his life before these episodes. So glad that you are doing research on this - thank you.

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I hope that your dad is doing ok now. It's very worrying isn't it. My 87 year old mum had her second seizure this week with the first being in December. She seems perfectly happy now thankfully.

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My father was diagnosed with dementia about 2 years ago and has recently had a couple of black outs which have been accompanied by a short period of twitching which I guess is a seizure. The first a few weeks ago was put down to low blood pressure although how this caused the twitching I don’t know. He also split his head open quite badly. He had his second today which was actually two, my mum heard a crash and found him on the bathroom floor half so tying against the wall, groggy but conscious. He tried to shuffle out of the room on his backside and she stood behind him supporting his upper back with her legs. She then felt his full weight on her and he’d blacked out so she lay him down and he started shaking/twitching for a few seconds. At the moment it’s, disgracefully, impossible to see his GP and at no point have they or the hospital doctors mentioned fitting or epilepsy as a possibility and they appear fixated on blood pressure. It is only because I thought of epilepsy today and found this page that I think it is a strong possibility. He has only. had blood tests which appears to be their effort to show they’re doing something but no scans or cognitive tests that I’m aware of. Trying to get any sort of even basic medical care and advice at the moment is extremely difficult and is making me very angry, something I’m doing my best to hide from dad especially. I will talk about this with mum tomorrow and make sure we raise it if and when a doctor can be bothered to talk to us! This has been a very useful discovery and I hope everyone is coping and thank you for taking the time to comment, it is very helpful. Take care.

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Hi, I am sorry to hear about your dad and glad to hear he is okay. I am not sure if he has a nurologist or not but that is who you need to see if you believe your dad is having seizures get a referral from the ER doctor and go from there. I have Epilepsy and have had it since 2006 when I had car accident that resulted in my having grandmal while driving and we at the time had no clue I had seizures or was even had seizures bc I never had one before my accident but, I always had migraines bad migraines they think those might have been anyways I also have a neurological condition NF1 causes a bunch of medical issues and I already have a lot of them and bc I’ve the mutating gene my body is not done yet unfortunately but that’s okay I’m still kicking it and bc of my brain surgery in 2011 I’m able to drive a d live on my own and teach and I was able to graduate from college in 2019. I went back in 2011 had a bunch of setbacks but I did it and I’m still on medication and will be rest of my life but seizures can be controlled if taken care of and if doctors think it’s something then they will do something but they probably don’t want to put your dad on anymore meds bc anti seizure medicine have so many side effects trust me on that and when you go into seizures if you loose consciousness blood sugar drops and w that BP will too and if you remain conscious blood sugar still drops but don’t let that scare you it’s just part of the seizures drink water afterwards and rest and couple hours later will be okay depending. Wish best of luck and I hope you find doctor that will get you some answers.

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Thanks Christina and good luck with everything. Yeah very wary of more meds especially when you look at the side effects. I saw one the other day - an anti depressant and can you believe one of the main side effects was suicidal thoughts, you couldn't make it up!

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Hi David,
I can believe the side effects bc I’m on a antidepressant right now as well as topermate Er And both of them have those side effects that you mentioned. In fact a lot if not all I think seizure meds have that side effect but I’m not sure and I’ve been asked numerous times how I’m feeling etc. the doctors office I go to now rather it’s primarily or to my anxiety I’ve to fill out a form on questions on mental health and how I’m feeling?? I think even at my epilepsy doctor and migraine doctor which is another office in Dallas has me feel out forms as well. Just check w the doctor and keep asking questions they put me on Ambien and man that stuff was horrible but I hate taking pills that I don’t need too and I think it was too strong for me and I had bad reaction and now I refuse take sleeping pills and I’ve the worse time sleeping and doctors working on that. I’m currently taking over counter melatonin zzz immune system gummies helps better than any medicine I’ve been on. Good luck

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My Mum who is 78 has mixed dementia and was diagnosed 4 years ago, though she most definitely was suffering prior to an official diagnosis.

She lives at home with my stepfather who is not managing the situation very well, I feel that he is in denial about the seriousness of her illness and just gets really cross with her.

I visited her on Friday as I was trying to set up companionship visits. Whilst there I witnessed my Mum have a choking episode, as it subsided she started to shake violently and uncontrollably for about two minutes, then it stopped and she was back to normal. My step father said it happens every few weeks, though I don’t think he has told her doctors.
My questions are, should I be overly concerned and should I alert her doctors?
With hindsight perhaps I should have dialled 999.

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Hello Teresa, thanks for getting in touch.

We would suggest speaking with the GP about your mum's situation. They will have a better understanding of your mum's medical history.

In the meantime, we have a factsheet on Understanding denial and lack of insight, which may be of interest: https://www.alzheimers.org.uk/sites/default/files/2020-11/533LP-Factshe…

You can call our Dementia Connect support line on 0333 150 3456. Our dementia advisers can provide information and advice. The support line is available seven days a week: https://www.alzheimers.org.uk/dementia-connect-support-line

And if there’s immediate risk of danger, please do call 999.

We hope this is helpful.

Alzheimer's Society blog team

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My mother is currently living with dementia. She had a seizure three weeks ago and was hospitalized. The Dr prescribed her Epilium and since then, she's been unresponsive and almost paralyzed. Most likely the medz contributed to her current condition but I also want to know, could she now have reached level 7 of dementia?

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Hello Syirin, thanks for your comment.

We are sorry to hear about your mother's current condition - this must be a very worrying time for you. The GP will be best placed to advise on the effects of the medication your mother is taking and the progression of her dementia.

In the meantime, you can call our Dementia Connect support line on 0333 150 3456 to speak with our expert advisers. They can provide you with information, advice and emotional support. More details here: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this helps for now.

Alzheimer's Society blog team

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My Mum, aged 81 was diagnosed with dementia over 10 years ago. She also suffers from dissociative or non epileptic seizures, so is not on any seizure medication. Her seizure activity resembles epilepsy with involuntary and quite violent
Shaking. Often the attacks are brought on by periods of frustration, and her cognitive function can take a major dip in the days preceding the attacks. Physical pain, such as a pulled muscle in her back can also result in days of seizure activity, as she forgets she has an injury and then a sudden movement can bring on the pain and prompt another seizure episode. Given that dementia can be a frustrating condition for the patient, as they try to compensate for the loss of cognitive function it is maybe not surprising that dissociative seizures may be a co condition.

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I find this site very informative and would rather read about personal experiences and testimonials than even going to doctors because I have such conflicting advice and none of them ask about what supplements and medication I am taking - I had an aortic valve replacement in Aug. 2018 - except for some dizziness in the latter part of my life and some memory loss ( which did come back after much racking of the brain ) I have been very healthy all my life and I was 75 then. I was sent to hospital and was found that my aortic valve was completely clogged with calcium deposits. I was amazed as I had felt so well. I also have low blood pressure. About 3 months after my op with hardly any problems, and I can't remember any pain - I went to the cardiologist and he signed me off - I asked him whether it was necessary to continue taking Ecutrin and could I discontinue ? he said if you want to you can. I felt fit and even managed to do a belly dance at our end of year yoga concert 3 months afterwards. Then in January 2020 I had my first seizure while I was fast asleep. My husband called an ambulance and I had extensive tests in hospital and nothing was found. I still took no medication just some vitamins. I felt fine but in Nov of that year had another one, I was fast asleep again then. It lasted about 5 mins and I was unconscious for about 20 mins. My husband called the ambulance again. It was described as a tonic clonic seizure ( like the first one,) no symptoms no side effects no warnings, other than confusion at the time - completely normal afterwards. More extensive tests followed including an MRI and like the last seizure nothing found. I was prescribed Epitec which has to be taken starting with a low dose, increasing in strength until the 4th week 2 x 100 mg a day. The neurologist at the hospital said if I see a rash to stop immediately. Not long afterwards I did have a rash and was told to discontinue the medication. About a week later the rash was still there, so I checked with my G.P. and blow me down - what timing - it was shingles. That took a while to clear up. I went back to normal life - no health problems and no medication - then in January of this year 2021, I had another one - fast asleep as usual - My husband just called paramedics this time as I'd had all the tests - he had a job trying to bring me around as I was unconscious for about 20 mins. Anyway all was well, but he then told me as soon as paramedics left I had had another one but not as long. I was fine afterwards but had bitten my tongue very badly and it was about a week before I could talk or eat properly - which gave my husband some peace. He really looked after me well for which I am very grateful I then went to another neurologist and she prescribed Epitec and I am now on my 3rd week. She diagnosed me as having epilepsy after I had an EEG and she found a microscopic defect on the squiggly patterns on the chart after the EEG. She then said see me in two years !! So far no side effects, except for occasional dizziness. What I find frustrating is that each doctor was so casual about what else I take, and what to take now. I have heard so many negative reports about taking daily aspirin from various people - I am now taking vitamins and Myoprin every second day. I will ask the pharmacist this week if that is okay. My 5 dogs keep me happy. I find that it's beneficial and helps to have animals to take care of and other interests ( if possible ) and a good husband and a good life and I try not to dwell on myself, and just go with the flow. There are people with far more problems than me and I think the carers and relatives who look after them mentioned in some of these comments need medals. Best of luck to all those who are suffering, and the carers and relatives who have to experience those with horrible diseases, and I empathise with all of you. Keep as well as possible good luck and stay positive.

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My husband has a Alzheimer's/Vascular Dementia diagnoses. His diagnoses came 2019 but there were signs for several years before. The MRI showed innumerable micromanages. He recently had an event of becoming unconscious . I didn't notice any shaking or severe
movement . Just unresponsive. Eyes closed. He was sitting at the breakfast table. His head went forward and landed on the table. It was about 30 to 45 seconds before he came to. I was going to call 911. I believe he has had a couple of these but it is not a regular event. Is this consider a seizure? Has anyone had this happen with their love ones.

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My wife is in her eighth year of Alzheimers. In 2018 she had a heavy fall in M&S and hospitalisation for her split head. Since then she has experienced 5 further mini-seizures all lasting a minute or so with clutching her face and a severe fear of falling, but then a full recovery. The doctors were worried about TIA's but have now told me not to worry unless they become more frequent or have lasting side effects. The closest definition I have found is Focal Onst Seizure. They are at last accepting that this is not unknown in the progression of Alzheimers which in a way I am finding easier to live with than if it was driven by her heart condition.

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My husband had his first seizure in April of 2020. He was diagnosed in 2017 with Vascular Dementia. It was scary. Was put on seizure medication. He has only had the one so far

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My Mom had them too. Just wondering what medication your husband was put on.

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Hi,
We think my grandfather experienced his first seizure tonight that we know of. Of you don’t mind sharing what medicine was he put on?
Thank you

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My mother is 90 years old and has been living with my husband and I for the last 8 months. She was diagnosed with vascular dementia in 2018. She has been having a seizure which lasts about a minute in the early morning about once a month during her stay. We did observe others prior to her living with us so I think they had been happening for some time un be knowns to us. The day after her seizure she would be much more alert and more like her old normal self. We tried antidepressants for 3 months, as her mood was quite low and during this treatment she went into delirium after her last two seizures. It was like whatever chemicals were released in the brain post seizure where heightened too much with the addition of the antidepressant. As she was unable to increase to a therapeutic dose due to side effects we decided to cease it. Five days post ceasing the antidepressant, she had her seizure and didn’t go into delirium. Hopefully now we won’t need seizure prevention medication now if she no longer goes into delirium post seizure. Mum had investigators ie blood & urine tests during the delirium to rule out infections as the cause.
I’m very pleased research is being done into seizures and dementia.

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