Jim had Restless Leg Syndrome until he started taking Ativan for his anxiety. The RLS disappeared, along with a great deal of his anxiety. The other bothersome symptom has been the tremors which grew to being intolerable.
These spasm type jerks and tremors were explained to me by our neurologist. He told us that as the deterioration spreads across the brain it can "pause and go deep" giving the patient "parkinson like" symptoms. These can range from balance problems to jerking to tremors. Primidone has been working great for Jim. We had to start low and work up over a week to 10 days, but there is a HUGE improvement!
Primidone is an anticonvulsant. It works by decreasing nerve impulses in the nervous system, which helps to reduce seizures. About Drugs.com
Wow. So much of what I've been noticing for years.....and it seems to be a normal part of the disease process. John had jerking a few years ago. Used to drive me crazy at night. I could count to ten or twelve and then another jerk. Now, its jerking along with tremors. I noticed this morning when he was bundled up next to me in bed still, he became very aggitated with me (one of his nasty moments) and he became very trembly and jerky. I'm going to discuss this with his neurologist.
swarfmaker, same deal here -- we started DW on both cinnamon and MCT products at about the same time back in December and thought we noticed a definite decrease in jerking, although we still see some -- most often after getting back in bed following an early a.m. potty call, and occasionally at breakfast, where she may jerk and upset a bowl of cereal or throw a cup of water all over the place.
Update: Primidone is working wonders for Jim, he has been on it for a couple weeks and what a difference! His gait is still a problem but it is wonderful for him to be able to hold a cup without a cover!
susan wonderful that its working for DH. i felt the same after starting the neurontin for the jerks. in these cases anti convulsants can be exactly whats needed for relief. divvi
My Dh was on primidone and it was working, but when the electrolyte dumping was diagnosed, Psychiatrist said to stop it (on premise that the last med added nust be behind the problem). Then he was put on Artane to go with his propranolol for the tremors. There were problems. Then the Dr. had us try cutting his psych meds and reducing the Artane(insurance was on him to cut back use of Artane) for the tremors. Got the psych mreds back to level needed, and changed Drs. Asked if we had to stay with Artane. Explained what we'd been told about Primidone maybe causing the electrolyte problem but we now knew that wasn't true. Could we try it again? He agreed. Between the propranolol he's been on for a long time and the primidone, his tremors are not gone, but greatly reduced, and with coaching he can quell them even more.
My husband has this also it started about a month ago with jerking so hard when he is sleep that i wake up but not him...his legs shakes the whole bed...I havent called the neurologist because he has been pn 2000mg of Keppra XR for the past year....does this happen because of progression of the disease and does this mean maybe going into another stage? How is this really explained?
DH was on Xanax but it caused more confusion even in low dosage. Dr. has now suggested repinirole. Not supposed to have the 'confusion' factor as a side effect. We'll see.
Anyone ever had their LO respond favorably to a blood thinner? One of our friends had her DH in the hospital for stroke symptoms. He was put on a blood thinner and the change in him was surprising to us. He was much more alert and took part in conversations which was a hugh surprise. Probably a shot in the dark but was wondering if that might make a difference.
Hard to say..my DH has been on coumadin since his 3X bypass surgery in 2005. He began with memory issues after that surgery but we were led to understand this is normal ( he was not on the heart lung) and later he had a small TIA in the pons ( lacunar stroke) which is related to hypertension despite being on blook pressure meds. Again some memory slips but told it would resolve..Don't believe that..it pushed him over the edge. According to our neurologist, something like that or even anesthesia can be enough trauma to do this.
Maybe others have other insight since my DH was diagnoses post coumadin.
My Lloyd was started on Keppra a couple years ago for seizures. He was started at 1500mg per day. All he did was sit around and slobber on himself so I stopped giving it to him. His first seizure was in April 2011 and it landed him in the ICU because of the drugs the ER gave him that put him into respiratory arrest. In the last 2 years he has only had half a dozen seizures so why medicate him 365 days a year? Now if he has a seizure, I just hold him and ride it out. There is nothing that can be done while he is having one. In June, he had 2, one right after the other. I panicked and called the ambulance and he went to the ER. This time I had my POA and demanded that they give him no medication unless they asked me first. The drugs he got in 2011 were Versed, Norcuron, and Morphine. He will NEVER get the Versed again. Google Versed and it will scare the s*** out of you! All he got in June was Ativan and he was not admitted. When we visited the neuro in October, he insisted on an anti-convulsant. We argued. I finally agreed to Dilantin 500mg 3x a day. Lloyd broke out in a rash all over his body. I stopped it. Then the doctor prescribed Keppra and I asked for liquid saying Lloyd had difficulty swallowing pills. He wanted him on 1500mg/15ml per day. I started him on 400mg/4ml per day then cut back to giving him 2ml at bedtime. We are now up to 3ml at bedtime. No seizures! Lloyd has only ever had seizures in the morning so the bedtime dose works. I avoid sleeping pills and anesthesia as much as possible. Why impair them even further...especially when we will be the ones dragging them around while they are temporarily incapacitated! It took me about a year and a half to be brave enough to start experimenting with his meds. I figured "What the hell does the neurologist know more than me when he sees him twice a year?". Now I do know that I know more than anyone else since I am with him 24/7.
Bringing this to the top again because we are now experiencing more severe stiffening and jerking. I have been sleeping in another bedroom for the last couple of months because of DH's jerking, talking and grinding his teeth during the night. The last two nights, though, I have slept (well kind of) with him because we've had family here and needed extra bedrooms. I didn't realize it had gotten so bad that he shakes the whole bed. His whole body stiffens and then starts shaking severely. I have read this thread and wondered if any current members are having this problem.
My husband has had myclonus for years. It is very annoying to him. He was on Gabapentin for neuropathy before AD diagnosis so they have just increased it a couple of times. It does seem to calm it slightly...not as severe...but it is always there. That is the reason that we starting sleeping in separate bedrooms about 3 1/2 years ago. The more agitated he is, the more severe the jerks are. He also has a lot of muscle rigidity setting in. That was the primary reason that he could no longer feed himself. The jerks were so sudden and unexpected that food was flying everywhere on his attempts to get it to his mouth. Now it is as if he doesn't have hands. He rarely attempts to use them for anything at all.
AuntB, my husband doesn't jerk so bad during the day but seems to be forgetting how to use his hands. I have to put his hand around the glass to get him to drink by himself and he keeps his hands folded in his lap and doesn't try to feed himself. I put the spoon in his hand at supper tonight and he put it in his mouth and said "there's nothing on it." I tried to show him how to get the food on it and he put it down and started eating with his fingers. I do get frustrated and have to keep reminding myself "He can't help it, he can't help it. Ha, same thing with wetting the bed. He really can't help it. I think Divvi said once "Just clean it up and go on (or something like that).