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    • CommentAuthorEinswine
    • CommentTimeFeb 5th 2017
     
    Approximately every three or four weeks my wife, a Alzheimer's patient, will experience "involuntary movements" when she first wakes up. During these sessions her body jerks and she struggles to maintain her balance if standing upright. The sessions can last anywhere from ten minutes to an hour. I have noticed that her understanding and comprehension, while she is having one of the sessions, is almost nil. Instructions such as "sit down" are not understood. To be fair, her comprehension of verbal communications is extremely limited at this point in the disease but it seems to be worse during the sessions. The doctors and neurologists that I have talked with all seem to think she is having a reaction to one of her medications but neither they nor I have not been able to identify any of her medications causing the problem. Twice I thought I had isolated a medication causing this reaction but then a couple of weeks later she had another session. These sessions started about the same time that she started seeing images in the mirror but I don't know if there is a connection there or not.

    Has anyone experienced anything similar during you Alzheimer's journey? I understand that it is possible that this problmen is unrelated to Alzheimer's and the medications she is taking for the disease but it was not a problem before her Alzheimer's diagnosis. FYI; She takes Pristiq, Namenda, Exelon patches, Celebrex, Omeprazole, Lisinopril, and Levothyroxine. Of course not all of these are Alzheimer's related prescriptions.

    Any experiences or information that you can relay will be appreciated as the sessions greatly increase her risk of falling.
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      CommentAuthormary75*
    • CommentTimeFeb 5th 2017
     
    I don't have any experience or knowledge but would hazard a guess that it is related to Alzheimer's. Is there any specialist, or pharmacist, who could research this for you? I have a friend who taught pharmacy at UBC medical school, and he was a bird dog when it came to this sort of inquiry. I would offer to contact him for you, but I am in a great deal of pain at present. Am seeing a surgeon tomorrow and am going to throw myself on his mercy to "move the waiting time from 3.5 months to now, please, look I've brought my overnight bag."
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      CommentAuthorCharlotte
    • CommentTimeFeb 5th 2017
     
    I agree it is probably AD related. As the brain is attacked we have all seen anything can happen. Even though she might not have had side effects pre-AD, they could show up now.

    Pristiq can cause seizures, fast heartbeat, hallucinations, loss of coordination, severe dizziness, severe nausea/vomiting/diarrhea, twitching muscles, unexplained fever, unusual agitation/restlessness, .

    Namenda - muscle twitching is listed as is confusion. My husband couldn't take it because it caused as he put it - his brain to be foggy.

    Exelon: seizures, tremors(shaking)

    Celebrex: dizziness

    Omeprazole can deplete the body of magnesium whose symptoms are fast/slow/irregular heartbeat, persistent muscle spasms, seizures).

    Lisinopril list includes dizziness and muscle weakness

    Levothyroxine side effects mostly are if too high which includes dizziness and shaking.

    As you can see they all can have the symptoms she is exhibiting. They all can cause high blood pressure which can manifest in some of what you are seeing. In a normal,non AD person they might not be a problem. Add AD to the mix where the brain is being destroyed in no particular way, they could be. OR they could have no relationship to her symptoms at all. Could be totally AD. I would have a good workup with blood work. Might try giving her magnesium to see if it helps any. A spoon of peanut butter at bedtime often works good to help the muscles.
    • CommentAuthorEinswine
    • CommentTimeFeb 5th 2017
     
    Mary and Charlotte, thank your for your thoughts. There is one person in town that I have heard about in my Alzheimer's support group who is supposed to be knowledgeable about individual medications and medications when used in combination with other medications. Our group meets later this week so I will try to get his name and see if I can contact him. I am not sure if he is a pharmacist or a doctor but they say he is very knowledgeable about medications. I have talked to two different neurologists and one primary care physician and none of them attributed the involuntary movements to her Alzheimer's but as we all know there are no fixed rules with this disease.

    The old method of stopping all of her medications and then adding them back one at a time will not work for us since the sessions can be so far apart. Most recently she had a session Friday and Saturday morning but Sunday morning she was fine. It is most likely to be another three weeks or so before another session, then again, she may have one in the morning,
    we just never know.
    • CommentAuthorLindylou
    • CommentTimeFeb 6th 2017
     
    These sessions you are speaking about sound like seizures that my partner has. She has had them most of her life. They are not 'grand mal' that cause her to collapse, but affect her on her left side only. Her left leg and left arm have jerky movements for five to 15 minutes. When she was well she could sense them coming and sit down beforehand. I am aware she will no longer be able to let me know they are going to happen at this stage of her disease.

    One thought of mine is that if she is seated and if it is safe, you might be able to take a phone video as it occurs so doctors might be able to better see what is happening.

    My partner is conscious while it is happening and after making sure she is sitting safely, I provide hugs and reassurance until it ends. I let her know it will soon stop. Doctors ask me to time them so I do.
    • CommentAuthorEinswine
    • CommentTimeFeb 6th 2017
     
    Lindylou,

    I did record her during one of the sessions and showed the video to her primary care physician and also to both neurologists. They said it did not appear to be seizures but looked more like involuntary movements caused by a reaction to her medications. That said, her sessions seem to be very close to what you describe above except that I can not tell that one side is dominant as her whole body seems to jerk.

    Thanks for you comment.
    • CommentAuthorcvh
    • CommentTimeFeb 13th 2017
     
    My husband has the same thing. They are called myoclonic jerks. They do occur as a result of the Alzheimer's disease progression in some individuals. Usually occurring at later stages. It is more common with early onset alzheimers as it is with my husband. Only about 5 - 10% of the population with Alzheimers have this type of symptom.
    My husband's symptoms were the same, occurring sporadically in the mornings. He could go weeks without a jerk then would have several in the same morning. He has gotten to the point where the jerks are causing falls.

    The myoclonic jerks should be seen by a neurologist specializing in "movement disorders". There are several types of anti-seizure meds that can control the jerks to a point. Keppra (levetiracetam) is one of the most commonly used. It worked well in controlling the myoclonus but, unfortunately my husband had a bad reaction to it, that doesn't mean your wife will also have a bad reaction to it. Lamotrigine and Valproic Acid are other meds that work for people suffering from this. Do not use Clonazepam on Alzheimer's patients, it is too hard on their fragile brains.

    I hope this helps.
    • CommentAuthorOnewife
    • CommentTimeFeb 13th 2017
     
    My husband started w morning myoclonic jerks and now I am seeing them more often thruout the day. They appear to happen when he is sitting or laying down. I asked him if they hurt and he said it was like a hiccup. I think they wake him up when he is starting to fall asleep. My Dh has Lewy body and he is early onset. With that being said I'm not sure what stage.
    • CommentAuthorcvh
    • CommentTimeFeb 13th 2017
     
    Onewife, that is how my husband's myoclonic jerks started. Now they are thruout the day. We are still adjusting meds since his bad reaction to the Keppra. Now he has regular falls and the nursing home is constantly calling me to say he has fallen again. I think we are getting it under control. It has become a matter of quality of life for him now. The increased meds make him irritable, but, he isn't falling as much. It's that or he will have to sit in a wheel chair, which I don't want since he is still capable of walking. He is late stage 6. The myoclonus started around early stage 6 almost 2 years ago. They started out as simple jerks of his hand or foot, now he has violent full body jerks. You may want to get it checked out before it progresses too much.
    • CommentAuthorOnewife
    • CommentTimeFeb 13th 2017
     
    Cvh my Dh is on Divalproex 500 mg 2times a day galantamine, namenda, sertraline. My Dh was dx over 2 yrs ago w Lewy body w Parkinsonism. He has been on meds for well over a 2yr. the only increase has been Seroquel. The seroquel was needed to control his behavior. The last increase was October. In the last few wks I notice weight loss and sleeping as much as 18 hrs a day than back to baseline sleep patterns. He is now 59 yrs old no falls and can still do adls.
    • CommentAuthorOnewife
    • CommentTimeFeb 16th 2017
     
    Cvh thank you yes I will talk to his drs. I did as lindy Lou suggested and took a video so dr can see exactly what I'm talking about. I do think it is part of Parkinsonism and will be difficult to treat without increasing his haulucinatins. This along w excessive sleeping is worrisome.
    • CommentAuthorEinswine
    • CommentTimeFeb 19th 2017
     
    cvh and Onewife, excellent information. Thank you both.
    • CommentAuthorGJS4406
    • CommentTimeFeb 21st 2017
     
    I do believe my wife has FTD. To make a eight month story extremely short, during the summer is when I knew something was wrong. Although she does not think anything is wrong and having a terrible summer last year I finally got to have her see a neurologist. Well, the neurologist thinks along with her PCP that it may be bi-polar. I think not. My wife says she has restless legs and during the summer/fall/winter she has a lot of the jerks described here, but when she is sleeping. One I swear it was almost a seizure. Told the neurologist on the first visit, she cut me off saying part of restless leg syndrome. Even when she falls asleep on the couch, she has them.
    • CommentAuthorpaulc
    • CommentTimeFeb 22nd 2017
     
    FTD is frequently misdiagnosed as bipolar. While it is possible for bipolar to develop later in life it is unusual. Unfortunately your normal neurologist has no experience with FTD. I strongly suggest you take her to a university neurologist with FTD experience. Where do you live, some universities have very good FTD experience and research, such as Johns Hopkins and U of Penn and USC.
    • CommentAuthorGJS4406
    • CommentTimeFeb 22nd 2017
     
    To paulc,

    We live in northeast Ohio and affiliated with Cleveland Clinic. She was to get an MRI but denied twice unless she had a neoropysc test. They messed up the order and was a fiasco. I would love to take her elsewhere but she is currently thinking I am the one with problems, everyone else thinks she is ok and basically in denial of her condition. Last year was rough, but since the beginning of the year I have been trying to live in her reality, which for me is rough at times, but have too. It calms her down a lot, although at times she does some very impulsive things without thinking it thru. It takes a few weeks before she realizes that she was wrong but then it happens again. The problem I am challenged with is having a disabled daughter, 34, who lives with us with a cognitive behavior problem. She can be very manipulative, has been over the years, to her mom, but currently more so than before. She would us I don't see a problem with mom and my wife believes it. Unfortunately she probably does not. I don't have a sister or brother and my wifes sister and brother in law are I do believe in denial. My wife's brother lives in Fort Wayne and basically does not bother with us. I tried to tell him but to no avail.
    • CommentAuthorpaulc
    • CommentTimeFeb 22nd 2017
     
    The Cleveland Clinic has a good rep with FTD. If you aren't happy with them can you consider taking her to University of Michigan Hospital for care. I know at least one person who takes her husband with FTD there, traveling from the Lansing area.

    And it is common for everyone else to think someone with FTD is OK in the early stages (even mid stages). And denial can run very, very deep. But I didn't have that problem.
  1.  
    If you are in northeastern Ohio, can you make any use of the Pittsburgh medical resources? UPMC and all that. But Cleveland Clinic is usually considered world-class.
    • CommentAuthorGJS4406
    • CommentTimeFeb 23rd 2017
     
    That probably is true with The Cleveland Clinic, but unless my wife finally admits to herself that she has some sort of illness than trying to get her to go somewhere else is next to impossible. The one thing that I have noticed with her is that she is extremely suggestible x's 1000. I know she use to be somewhat suggestible but last year it got out of hand. The only one she doesn't believe is me. We went to counseling, first thing they say is 'you know Gary, people do change.' She heard that and next thing is 'see Gary, people change.' I try to say, OK, but within one month, going from being happy to wanting a divorce, or legal separation back to loving me and back to divorce or legal separation. I'm sorry, it does not happen that fast.

    From what my son told me, people do not want to tell people with a mental illness they have a mental illness. I wanted to go to a neurologist to begin with, but her sister and PCP all suggested counseling and perhaps she has depression/stress. I have depression also, had one breakdown fifteen years ago, but within three weeks and re-adjusting my meds I have been fine since. This is completely different. When we went to her neurologist she was already convinced bi-polar, that was the first thing she asked, 'have you ever been diagnosed bi-polar?' Then she said it could be possible FTD but without an MRI they won't know. My wife started arguing with me about couple of things, the neurologist stopped and said I don't want to hear 'he said she said.' What she then said her job is to find out if it is neurological or psychological. If it is psychological then medication adjustment would help. The only thing my wife heard or admit she heard her say was medication adjustment.

    After the neuropsyc test was not ordered properly, what my wife told me was 'see, the neurologist, our insurance and the nurse practitioner don't think I have a problem, but all of them think you are the one with the problem. So I am back to square zero.

    What I see is this: doctors, counselors, medical professionals, especially younger ones in their late thirties early forties have been raised by different values than the older generation was. A wife of 35 years of marriage out of the blue finding a 'boyfriend' and wants a divorce, big deal. Happens all the time. Look at the magazine covers, watch TV, see, divorce is common, people cheat all the time. Problem is, that does not happen all the time especially when you know that person for 38 years and the morals she had. Normally a person does not change in one or two months, especially after moving to a different house in June and want a divorce in July. Plus knowing getting a divorce would be devastating to our disabled daughter.
  2.  
    My husband just had "regular" Alzheimers, but others here have FTD spouses and may be able to chime in. I know it was beyond frustrating that I knew something was definitely wrong, but only I could see it, because we were together all the time, and I knew him so well. If one more person said, "He seems fine to me." I thought I was just going to scream. And of course, he could fake well at the doctor's office--so it took a while to get the doctor on board, too. It may be that it will take some time for your wife's issues to become more obvious to others.
    • CommentAuthorpaulc
    • CommentTimeFeb 23rd 2017
     
    Getting the neuropsych exam is very important. It is more important than scans if they suspect FTD.

    And yes, she will listen to you last. Take advantage of it and work on having others suggest things to her. But a problem is that her hearing is very selective. What you describe is very common with FTD.

    As to being suggestible, I have one very unfortunate incident. My wife and I were ready to get sign our new wills with our lawyer. She called to father to say what we were doing, her father believes very strongly in not using lawyers for what he considers to be simple things, so he got upset on the phone with her. His anger transferred to her and she got angry with me. So your wife might pick up both ideas and emotions from others.
    • CommentAuthorGJS4406
    • CommentTimeFeb 23rd 2017
     
    The problem again arises from her family. Her sister and brother in law, since last summer, dislike me. So they think she is fine, not me. Yes, she does pick up ideas and emotions from others. Currently she has very strong emotions for disabled people, probably because of our daughter. Her 'boyfriend' was supposedly disabled and felt sorry for him. This is basically how I thought FTD right away. She started talking about 'Gerry" and that he was a friend of a old high school she knew. Her high school friend was moving and she asked my wife if she could help him by keeping him company. One evening she said my HS friend needs help packing so I got to go help her. A week later she went out in the afternoon, came home and started talking about 'gerry' to our
    daughter, she was over his mom's house, brought home some fresh veggies and such. I looked at her and asked, are you cheating on me? The next morning I got up early to walk, came home, she was extremely worried were I was. We talked for a while then started crying saying something happened to her body six months ago, I don't know what it is, cried about her mom, looked at me and said I cheated on you and if you want a divorce I understand. Here is the funny ( not at that time) part: over the thirty five years she likes to pick my pimples. She said, well I didn't pick his pimples, got up and within three minutes was like a normal housewife as if nothing happened. I called my son and he said, dad, she has FTD I been telling you that for two years. I never really listened to him at that time.

    Over the course of the week, I asked questions, she said it was partly my fault for what happened and I swear on a stack of Bibles was like a high school teen telling her steady boyfriend that I chose you to be with not him, but that can change. She had four psychotic breakdowns, one in which she called her brother in law to pick her up because Gary might hurt me. I called him back, told him to take her to the ER, but when he came over said nope, taking her home to evaluate her. That is the beginning of our counseling and nurse practitioners putting her on different anti=depressants.Over six weeks it was almost like living with someone from high school, bratty to me,divorcing me ect.

    Once her meds kicked in she started to get better but now her memory is getting bad. More like short term amnesia at times. The beginning of this year I decided to live in her reality, no anger, she doesn't see her 'boyfriend' occasionally says she misses him, i change the subject and back to something else. Anger or being angry at her is an act of futility. Reasoning at times with her at times is a waste. Better to say, yep, your right. This afternoon she was saying everything is always your way so instead of disagreeing I say yepper, I'm a rotten husband. Stops the conversation.

    Oh well, thanks for reading, thanks for replying and I will write later.
    • CommentAuthorEinswine
    • CommentTimeMar 15th 2017
     
    cvh and Onewife,
    We had an appointment today with a psychiatrist who is also the director of senior behavioral health at our local psychiatric hospital. Upon viewing the video of my wife he immediately said she was having myoclonic jerks. He has scheduled a EEG to determine treatment. Thank you both for your responses which allowed me to be somewhat familiar about myoclonic jerks in our conversation today.
  3.  
    My DH doesn't jerk but does a lot of hand movements when up in chair .he puts his hand out as if he's reaching for something. Picking at it with his fingers . He is usually napping wen this happens.
  4.  
    My husband was Lewy Body early onset and he had the myoclonic jerks. They were always worse when he first woke up in the mornings.
    • CommentAuthorcvh
    • CommentTimeApr 1st 2017
     
    Einswine,
    Glad I could help. My husband was put on a drug called Keppra, which worked really well for the myoclonus, unfortunately he developed a bad reaction to the drug, and we have had to try and find another one. We will be going back to the neurologist later this month to try yet another one, since the current drug (lamotrigine) does not seem to work. My husbands neurologist said that the jerks are a result of the Alzheimer's disease and not because of any drugs he is on.

    It's a good thing you managed to get a video of the jerks, I was never able to. Good luck to you.