Not signed in (Sign In)

Vanilla 1.1.2 is a product of Lussumo. More Information: Documentation, Community Support.

    • 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.
    •  
      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."
    •  
      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
    • CommentTime7 days ago
     
    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
    • CommentTime7 days ago
     
    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
    • CommentTime4 days ago
     
    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
    • CommentTime1 day ago
     
    cvh and Onewife, excellent information. Thank you both.