This afternon my LO had a seizure... He's been the hospital several times this last month for passing out.He did the same this afternon except he also started to trimble and salivate. Icould not get him to focus and his eyes rolled to the back of his head . I have never been so svcared as today .I called the hospice people and they sent the nurse but it took almost an hour I was ready to call 911 but they said to hang in till she got there . and when she arrived he started to revive. I was told by the nurse that could happen again and to be prepared to just comfort him and let it take it's course....I guess i had never put seizures with Alz . and was shocked when this happened .Has any one else had this happen and what did you do?????
You just let it happen, try to get him seated if he's not, and just hold him. It happened several times when my husband was just out of the hospital years ago (when I think the AZ started but of course didn't recognize it for some years). And has happened from time to time since. The problem with calling 911 is that they are OBLIGED to start resucitation etc, and if you've got a late-stage AZ person on hand you may not want to do that. And when they take him to the hospital, the hospital feels it's essential to put him through all the tests, and sedate him so they can etc etc. The last time it happened with my husband was last summer, when I was in Maine (I live in RI), and my daughter was alone with him. She called me and I said, well call 911 so she did, but then when they got there, he revived - but they took him in anyway, and before I could get there, the next day, they'd sedated him heavily (5 seroquel when he'd never had any) and were determined to pressure me to send him to a nursing home! Of course I didn't want my daughter to be alone in hanging onto him for 24 hours; or making the judgment not to send him, so it was what had to happen, but when it happens when I am around, I just calm him, let him lie back. He's usually very sleepy afterward!
Goodness that must have been frightening for you!!! I have never seen a person have a seizure but I have a pup that is epileptic. I hate it when she has one. She takes Phenobarbital daily and extras when she is having a seizure. I was told to turn off all the lights, all sounds like tv and radio. The best I can do is hold her to keep her safe and whisper soothingly.
When Hospice was coming for my Mom they did not want me to call 911 unless she fell and broke something. First I was to call them for advice. She had passing out spells and had had them for years. Even after ER checks they never found anything. She would be sitting at the table and just go to sleep and we would have to carry her to her bed or even leave her on the floor with a pillow and cover until we could get her awake. She would be standing talking to you (before she became wheelchair bound) and suddenly fall to the floor like a tree toppling. Not just slipping down but boom, just flat out. Forward or backward. Once she did this at a basement gathering and her head hit the floor. Took her to ER and nothing. She did not have seizures. Sometimes, during the last year, it would take us 15 minutes to wake her up and she didn't remember anything about things. Hospice advice was to not panic, try to wake her. After 20 min. or so call them for advice. I think this was TIA, but Drs. never put a name on it.
thank you all for the help ,last night I was up every few minutes just to check on him .I know it sounds crazy but to do that but he's all I have we've together for42 years I HATE this is happening to him... sorry I guess I"M feeling sorry for myself.I have to look on the bright side .This is a new day wonders can happen....
I suggest you get a TV baby monitor and put it beside your bed and that will save you lots of sleep. I would wake up during the night to check on my Mom and not have to get physically out of bed. You do have to leave a low light in their room in order to see good enough. I set a lamp on the floor and draped a towel over it. I haven't needed it yet for my husband.
Night lights come in more than one style. I recently bought two that will also turn into emergency lights if the power goes off, and can be used as flashlights if you remove them from the socket.
But my point is that this would be a lot safer than a lamp with anything draped over it, and probably about the same amount of light.
I have two of them in what could be called either my hall or my dining room. My daughter no longer needs us to leave the small lamp on when she visits because these two nightlights are enough lights to move around the whole main area of the house safely.
Nanapapa, I did last month. And this week, I received the bills from the ER, doctors, MRI and other tests....with good insurance, I still have to pay $700 for his stay in the ER for a day. And like others, they found that he had a probable TIA, but nothing definitive. I think these seizure-like events are something that happens that I wasn't aware of. Next time, I'll keep him home longer and see if it is the same thing, in which case I know what to do! And, I won't panic like last time!
Starling, we had a power outage this morning that made me realize I have to buy some of those circular lights that you touch to come on or go off for our bedroom. We have nightlights and enough electronics that normally provide adequate lighting for during the night, as long as we have power!
Tonight he was at the kitchen table waiting for me to start dinner (I really don't want to before 5 pm) and I heard funny little whimpery noises and he was curled over onto the table, and twitching. I went in and he was breathing heavily and eyes were closed. I just held him and waited a few minutes, and a few minutes more. His arms just fell to his sides. I managed to get him a little awake but then realized I couldn't move him alone, so I called my daughter home from work (nearby, and it was her break time) and together we got him into the transport chair, then I called a neighbor and he came over and helped us get him into the stair-glide chair, up the stairs, out of it and back into the transport chair. He was waking up more and more and objecting to being manhandled more and more. By the time we got him into bed, I was able to change his depends, get his support stocking off (mustn't stay on overnight), and he was standing up to pull his pjs up. Still in a bad mood but hopefully he'll stay down tonight. But throughout his breathing, and his pulse, were steady. Nothing seems to be paralyzed, and he's perfectly cogent. Just annoyed. I'm glad that this time we didn't go through taking him in.
My husband had a full-blown grand mal seizure in January...it was terrifying! When the convulsing stopped, his body went completely rigid, and he made a strange growling sound. The fire department was here before he started to come out of it, but he was totally combative, pulling out IV's, etc.It took six guys holding him down to get restraints on. The whole thing, including the hospital stay, was a nightmare. Has not happened again; no way of knowing if it will.
I was told it could be from the Alzheimer's itself, but generally seen later in the disease, or it was a reaction to the study drug he was on at the time. No real way to know.
Just an update: last night he slept heavily (I could hear him snoring through the door), didn't wake up until almost 10 am, and is perfectly normal. He hasn't mentioned last night and neither have I.
There have been noisy outside disruptions yesterday and today - yesterday they came to put asphalt on our driveway (sorely needed!!) and today the electric co. is cutting trees away from power lines. It is noisy and irritating for us all. I had planned to take him out for a drive to an outlet store - the leaves are gorgeous right now - but getting him into the car when these machines are all over the street wouldn't work. Maybe later.
It was the Elan study, phase 2...bap? (I can never remember the name). We were in the open study by that point, he had had his third infusion that we knew for sure was the drug. He was getting the highest of the three doses; they determined it should be administered in stepped up doses, starting out more slowly. It happened 6 or 7 days post infusion. I never heard that it was a common problem, so perhaps not study related.
Marge, did they take him out of the study after the seizure or is he still getting the infusions? I'm in the process of checking out trials, etc. and am very interested in what has happened to those who have been in this one. What stage is your DH in?
Briegull, i know its scary about the seizuring. myclonic jerks is a mild form of it i suppose its scary enough. i pray your DH is done with them now. divvi
My husband no longer gets the infusions, but has been continued to be followed by the study. As I am struggling with the decision to place him, we may well quit even that. He is about mid-stage 6. He has been part of the study for over 3 years. He was mild to moderate when he began.
well folks it happened again last night another seizure ( grand Mal) according to the Hospice folks. and like some of you tol me stay calm and keep him calm it took about an hour to fully regain himself then he had a headache and went to sleep seems OK this morning. I'm learning each and every day thanks to all of you who have been ther or no some one who has. you are all great blessing thank you
my dh has started having seizures at night. he jerks and trembles alot through the night,but now he is having seizures. it is so scarey. he had 4 last night and three the night before. it's like an earthquake in the bed.he never wakes up. i just try to put my hand on him and hold on. my dad had epilepicy and he seemed to always get seizures at night also. it was always scarey fo us kids. my dh is declining so. it is really getting to me. hospice transitions came out and talked to us thursday. i do need help but sometimes i just don't know how to get through this overwhelming,well,everything. dh doesn't qualify for the full hospice program,because they say he is still high functioning. they can only help when things get worse,but we can get help from the transitions program. they have setters and comfort support and help find things you need. he hasn't been sleeping until he is just worn completely out. dr keeps trying med readjusting and adding new ones to no avail,until tonight. i'm afraid to say anything because i pray this med works,at this dosage,smaller dosages didn't work. i had to up the dosage tonight. it is for tremors,myclonic jerks and to help him sleep. i pray the seizures don't return.i am exhausted,but i wanted to check this site while i actually had a chance. jav
My dh has the jerks and trembles through the night and sometimes during the day. He has had them for several years but no seizures. That would be scary. I am sure someone else here has faced that problem. I understand your being completly worn out. Is it possible for you to sleep in another room? When I was sleeping with dh I couldn't rest very well. I highly recommend your moving out by yourself.
dr took dh off welbutrin,he has been taking it for some time now,it makes seizures worse. he upped his dosage of keppra from 250mg 2xdaily to 500mg 2xdaily for 2 weeks then 1000mg 2xdaily after that. we wants to do an EEG. i don't know how that will work out,but dh hasn't had one in maybe 2 yrs. i am afraid to move out of the bedroom,i am afraid something will happen to him and i need to know he's safe. sometimes if he is sleeping good i will get up and get in the recliner and sleep. i have to be right there if he tries to get up. this morning i woke up to him falling in bedroom floor. he had his clothes down and was using the bathroom [#2]. i got him up and to the bathroom and cleaned up the carpet,thank goodness it wasn't that bad,but he is just getting so much worse,so fast. he has still been able to feed himself,messy,but still could do it,now i am having to help him.he will just think he has food in his hand and put it to his mouth. he will eat paper wrappers on snacks and cookies and just squeeze them until they are just tiny crumbs. i have had real problems today and tonight getting him to swallow his meds. i had to just eliminate his vitamin and fish oil pill,since they are larger. i guess it's time to try putting meds in pudding and hope that works. this is just such a nightmare. i wish i could wake up. jav
jav i am so sorry DH has gone down so quickly. we are taking neurontin for Mjerks instead of keppra. i understand that dr wants to stop those jerks at all cost but that is alot of dosage increase so fast. in my case i have been upping the neurontin 50mg as needed for any new jerks til they stop. we are at 400mg/x1 day now from 50mg in jan. seems to be ok for now but if they start i will consult with neuro i think to give another dose in the pm before sleep and keep the 400mg at 5am which helps. i saw that DH was little more stumbly and disoriented on the 400mg at once so i wont give more than this in one dose. better to spread it out. i just wanted you to know that large increase may stop his jerks but can produce other side effects too. read up on the meds and see what to expect as far as side effects so you can report back to dr just in case. in my case, gradual increases having time fo rthe body to adjust to the low dose increase has been positive. i hope all goes well for you soon- we may try keppra too at some point along the way - Divvi
My person seized at the NH, coded, was sent to the ER, and while testing him seized again. They revived him prior to me arriving with all his paperwork in hand. He had been having very bad side effects to antipsychotic drugs, including they found, a deep vein thrombosis, that they thought caused the incident. They later decided that the nursing home holding back his Lorazapam for a couple of days - to make him less dopey (because I was wanting him taken off the antipsychotics which were zombifying him) even though I kept telling him that is the one drug that works for him and never caused a problem. Well, removing it caused the seizures. He was non- responsive for 2 days, then became responsive, and after three days they discovered he also fractured his shoulder. It wasn't until 11 days later when he was back in the nursing home, they discovered he couldn't bear weight. They xrayed his foot and said it was a broken toe. I had the Dr. who did the 4 week check on the shoulder xray his hip & as I suspected he fractured it too. So he's been bedridden since the seizure, on Kepra. He got pneumonia, thrush and a UTI in the hospital, from tubes, and has recovered from those events. The shoulder is NOT healing well, had no surgery, and that worries me. I knew he needed to be off the antipsycotics (the only time he had aggressive behavior was when he was on them) and i knew they were the source of his leg swelling, but no one would listen to me. They looked at me kinda like I was nutz when I said I wanted his hip xrayed, and sure enough, it was fractured - that is why he can't bear weight. Maybe they will start listening to me. I have been through some changes trying to accept his "new normal" as the quality of his life sucks. (Sorry, telling it like it is). They did get him off the antipsychotic drugs after this, and everyone at the home couldn't believe how lovely and cooperative he is, since he was in a stupor since he'd been there, having been evicted from another home to geripsych twice in the last 4 months. After 11 days in the hospital with him, I got pneumonia, then relapsed, and have had to just let go of any illusion I can control what happens. What bothers me the most is that I couldn't protect him. Hopefully, his seizures were caused by sudden withdrawal of Ativan.
I'm sorry that you've had such a rough time. I know that sickening feeling when you realize you can't control or protect them in spite of your best wishes and efforts. You are both in my prayers. Much love being sent our way.