My DH has eposides, while sleeping or just waking up, where he will tighten his whole body and stiffen severly and have whole body tremor. Not sure if I am describing it right. It appears to be like when a Non-Park/AD person will stretch when you waken in the morning, except he stiffens sort of like when a "charlie horse grabs you". He used to get a "charlie horse cramping pain while doing this" but since he has been on Neurotin 600 3 times a day, he does not complain of the cramping.
I sleep in another room and am not aware of the "stiffening" as much, but the other night in the middle of the night, he came in to finish the night in bed with me, and I seen how much he "jerks" during the night. When your body is "jerking" that much I don't imagine your sleep provides you the rest you need. He has some mild jerking during the day but slight.
I imagine this is a Park. symptom and am going to discuss it with our pcp at our next apointment. Neurotin is the only Park. med he is on because the AD is primary in his case. If anyone else can shed any light on this I would like to hear about it.
Is this like the myclon. jerks being discussed on this board? (He is also on aricept, namenda, wellbutrin sl, xanax and a pain med.)
Imohr, From what you described it does sound like Myoclonic Jerks. As I have mentioned in the past sometimes my husband's are very strong & sometimes more like a tremor. His jerking wakes me up, however, he doesn't wake up. My husband's Neurologist prescribed Keppra. Also, others have been precribed Neurotin, which you mention that your husband was already taking.
Imohr yep sounds like the myclonic jerks, my DH suffers them too but neurontin 300mg in the am at this point has it controlled mostof the time. on full moons he has more:)my DH has them mainly right after a deep sleep then as he becomes more actiive they subside, very strange- it does sound like it could be time to up the dose of the neurontin again this is what we do when the jerks start up again. i think they grow tolerant pretty quickly to doses of neurontin and need to up the dose sporadically to control it better. talk to your dr -even by phone they may up it for you to see if it helps. divvi
My DW has these "jerks" usually as she is going to sleep at night. Once she is asleep they disappear. So far they are not very serious. They bother me more than her - she is not really aware of them. If they get worse I'll consider neurontin, etc.
yes, marsh that is how they started here too. just slight jerks as he was falling asleep-jumping and twitching -he was doing this prior to AD dx as well. i believe with AD the brain is being ravaged by the plaques and the short circuiting causes misfiring and the spasms. at least you know what to watch for and can get it under control asap if things worsen. Divvi
You have three meds that may be causing or exacerbating the jerks and rigidity.
Neurontin itself may be the cause. Frequent side effects include hyperkinesia, an abnormal increase in muscular activity. Hyperkinesia is separated into 2 types: rhythmic and nonrhythmic. Rhythmic disorders consist of mainly tremors. Nonrhythmic disorders are mostly involuntary muscle contractions. One example of a nonrhythmic hyperkinesia disorder is tics. Other side effects, although they are infrequent or rare, include dystonia, apraxia, fine motor control disorder, local myoclonus and hypokinesia.
Wellbutrin's side effects include muscle spasms, myoclonus, dyskinesia, dystonia, akathisia, and (rare) pseudoparkinsonism.
Rigidity, tremors, and akathisia have been reported by patients taking Xanax. It is a benzodiazepine, and dystonia and loss of coordination have been reported in association with the use of benzodiazepines, although I didn't see this reported specifically for Xanax.
I haven't seen any warnings that any of these drugs interact. However, when I see that a patient is taking two meds, both of which can cause a particular side effect, I do wonder if taking both may be making the side effect worse. Not terribly scientific, just a gut feeling...
thanks SS, as you say, some of the very meds we take to relieve a particular symptom are the cause of side effects for another. that may explain the seeming need to upthe dosing with the neurontin,-- its working to combat the initial MJ-but simultaneously increasing the MJ as a side effect of the same med- thus the continuing need for more mgs. as they increase...interesting..divvi
We doscontinued the neurontin because of the extreme sedative side effect it had on my DH. It didn't seem to be helping the jerks and I didn't like the effect it had on him. I'm sort of sorry I didn't give it more of a try, though. He is now jerking worse than ever..daytime and nightime...worse when he wakes in the middle of the night to go to the bathroom. He's been on Seroquel to stop some of the anxiety and restlessness, but I'm going to ask our PCP and neurologist to consider something else. He is not sleeping enough for me to get enough sleep. He paces until almost midnight some nights and then is up during the night to go to the bathroom (so I'm up, too) and then wants to get up and get dressed at 6:30. He refuses to go back to bed and just keeps saying, "Let's go and get some clothes". I'm not sure what to ask the doctor to try...maybe ativan, maybe something to help the jerking? My neurologist is very resistant to meds saying that the side effects are worse than what we're giving the meds for...but he's not living this nightmare!! Lately, my DH has become much more confused and needing help with everything.
FLgirl, As I have mentioned before, my husband also suffers from Myoclonic Jerks. His Neurologist prescribed Keppra, which has seemed to help. My husband could not tolerate the Neurotin.
keppra may be a good choice, Fgirl. my neuro offered this too but i chose neurontin as it had smaller dosing to start with ...only we know how hard it is to live in AD world -try something and see if it helps, if not at least you tried. ativan will definately put him into limbo land too and sedate him alot..there are a few more meds out there for the jerking as well if these dont work! divvi
Sometimes he jerks in his sleep. Doesn't seem to bother him. He seems to be getting stiff during the last few weeks. I can't really describe it. It's mainly in his neck and he says it really hurts bad. also, he is sleeping a lot during the day.
my dh has the tremors and jerks at night more. he does have hand tremors during the day also,but not all the time. he takes keppra. it has helped with the severe myclonic jerks he was having. he is also taking welbutrin and i have suspected for awhile that was causing his tremors to be worse. it does help with his mood but the dr has just uped his dosage because he has been crying again. i think i am going to hold off on the larger dosage. the dr left it up to me. i am afraid the tremors will get worse. jav
hummm.. the myoclonic jerking seems to becoming more frequent here as more members arrive. its a ghastly symptom and drs can only offer meds to help control it but doesnt really stop them. I have read and read all i can find but really nothing explains very well WHY they are predominant with AD or an explanation to my satisfaction of why they occur during this disease. Can all varieties of AD, VasAD-EOAD-FTD-have Mjerks as a common demoninator?i would like to take a polling,,,if your spouse shows signs of MJerks, please post their DX. i will start, my DHhas dx of Vascular Dementia/w combo AD or the likes! then maybe we can organize and see exactly how these jerks are afffecting AD's different forms of dx -Sunshyne you may be interested too in this as your DH has same dx as mine if i remember, Vas AD/and/or ADcombo? i guess if we are seeing all forms of AD showing this symptom at points along the journey, many of you to come may experience this as well in the future, thanks, Divvi
CommentAuthordivvi CommentTime1 hour ago maybe someone could move this MJerk post to JERKS/Stiffening??? it prolly belongs there...instead of here. divvi//(i cant copy/paste!:)webtv
My husband had myclonic jerks and the neurologist ordered depakote. It cleared up and also stopped the severe headaches he had for years. He had ALS with FTD. I wonder how many people had migraine headaches and if any men took testosterone and how many women took hormones with testosterone in them. Since both ALS and AD effect men more than women I think that is the connection. My husband took testosterone injections. Judylyne
My husband was diagnosed with plain old Alzheimer's Disease at 62...has myoclonic jerks for the last couple of years that are increasing in frequency and severity. Thanks for the info in what might work. We see him primary care doctor on Monday and he's very open to giving me a prescription for something that might help.
my dh has eoad at age 52. he takes keppra for the myclonic jerks. it has helped as they are not as severe as they were. the has alot of tremors now though. the keppra doesn't help tremors. jav
My hubby has EOAD as well, is 59 and also has occasional jerks at night also some twitches in his face when he is tired. He takes nothing for this but is on Aricept and Namenda along with supplements.
I mentioned to his PCP, DH jerking and twitching at night. He said the Exelon could be doing it and to contact the neurologist. I'll do that and let you know what I find out.
All, I know this thread is old, but my DH's first key symptom was his myolonic jerking. We went through a whole series of tests and doctors to try to identify the cause and have tried neurontin and many other medications. The one that seems to help is one that is not mentioned here: Risperdal. You have to keep the dose low and, as with other meds, Risperdal has as a side effect the causation of jerks. For some reason, Risperdal has had the opposite effect on my DH. We originally started Risperdal because my DH had a psychotic break and was hearing voices and seeing things. We were able to reduce the strength from 4 mg to .5 mg daily. When we tried taking my DH off Risperdal altogether, his full body jerking started again.
I am very curious to see if there was a poll and, if so, what conclusions, if any, were drawn from the poll.
i had posted on dec 7th about my dh's jerks and tremors. he is now in stage 7 and has also been diagnosed with parkinsons,and i am not suprised. his jerks and tremors are much worse and he is taking 500mg of keppra 2xdaily,it just does not help the tremors,they are terrible. neuro says he will eventually need to be put on a med for the parkinsons. why? he takes so many dedications already,how can another med help him now? he can still walk,pace,by himself sometimes,and sometimes he can't get his balance right and has to have help. i just don't know what can help now. jav
I think there is definately some connection relating to parkinsons. i found out DH maternal side of his family is rampant with parkinsons. i had no prior knowledge of it neither from his brother that passed 2yrs ago. i asked the neuro about the what ifs and he said he didnt see that as being a factor for DH at this point if he didnt have it by now. i also think even with meds to control these myoclonus jerks they continue to grow in intensity over time with meds or not. if you remove the meds they come back worse. i saw DH twitching in his sleep decades ago so that may have been a cursor of the beginning. i was thought he was just so tired and unwinding while sleeping. as more members join i would also like to know if they experience the jerks. they are quite an issue with me and so far the worse thing to deal with. divvi i personally am thinking as they progress in this disease less meds is much better for them.
My 52 year old EOAD DH has these jerks too - never knew what they were called! I had mentioned them to one doctor he went to and they thought he had CJS (mad cow) disease so I haven't brought it up again! I will ask about some meds next time we go in. It is more while he is napping during the day or right when he falls asleep at night. I'm used to them by now and they don't seem to bother him...
My dh jerks are much worse now. They don't seem to bother him either. His first symptoms were like a "tic" beneath the skin, particulary in his arms. You could see them beat and really irritated him. That was when he wanted to go to the Dr. to find out what caused them. Our pcp promptly sent him to a neuro, so I guess that is a sign.
DH jerks keep getting more severe. Haven't called his Neuro but expermenting on my own. I upped his Neurotin from 2 - 600 mg. a dat to 3- 600 mg. a day and had pcp prescribe celexa in place of Wellbutrin. Celexa you can get generic and I can't see any difference. His jerks are doing better now and not as severe. I think I will ask the neuro if he thinks the Keppra would be better than the Neurotin. My DH has Parkenism with both AD and VD demetia. I have to be very careful when changing meds. He tolerates the Neuotrin ok.
imohr, as you know my DH suffers myoclonous as well -. we are doing so well with the upped dose of 4oomg /once/day of neurontin at this point i wouldnt dream of changing to another to try. neurontin can dose up to 3600mg! per day..so we have some span time left -keppra works well i hear but i wanted to stay with what i know has no visible side effects for now-they seem to progress more with each stage. good luck divvi
swarfmaker, i looked that up. interestingly enough i see alot of overlapping with all the dementias i seem to be able to associate some symptoms from all the variant dementias!:) so if the PHD;s cant pinpoint the exact nature of the myoclonous i give up. what i do know is neurons are dying at excellerated rates with the AD, stands to reason that neurons associated with producing dopamine are dying as well. using dopamine antagonists could very well be contributors as well. the resless leg syndrome, parkinsons drugs, and alot of the neuroleptics could be actually causing increased myoclonous as well. anticonvulsants, serotonergic drugs could be culprits also. so seems everything we could possibly be given to help our loved ones with the AD along the way, could at some point cause myoclonous.. its a never ending battle.. divvi
swarfmaker gave some info about herself when she first joined the forum -- taking care of her AD mother, English ancestry, lives 1500 mi from Florida, machines metal as a hobby, etc.
This entire group personifies "Scuttlebutt"..............
One person wonders about it....... The next one asks about it Then one heard about it... The next one swears about it And it becomes God's Honest Truth!!!!
divvi, I must have just assumed the daughter bit because I can't find any support for that in going back and reading posts other than saying something about adding flour to gravy.
I always find this topic interesting. DH had terrible jerking when he was falling asleep at night early in our relationship - over 11 years ago, way before AD was diagnosed or even suspected. It was often so bad he would have to get up and leave the bed so I could get some sleep. I was concerned about it, but he chalked it off to "Restless leg syndrome". Looking back now, I realize it had to be more than that. His whole body jerked, even his head. I never heard of Restless Leg Syndrome causing that. I now suspect that it was very early signs of AD. The really strange thing is that by the time he had symptoms, the jerking had completely disappeared. It's as if the part of his brain that was "misfiring" was already destroyed. I don't know. I mentioned the early myoclonus to his neurologist a few months ago, and he dismissed it, saying that it's very common to have jerking like that when falling asleep at night. But I'm not convinced.
Anyways, I go back and forth. Sometimes I think DH got sick only a few years ago and deteriorated rapidly. Other times, I think he had AD a lot longer. At times, I still think that there could be a connection with his having had Encephalitis as a teenager , but there's no medical evidence to back up any connection. It's so frustrating.
Anyways, it's just amazing to me how many people with AD experience this symptom.
kelly i agree with you about your theory. mine too had the jerks wayyy when i first met him. thought it was decompressing from stressful job after a hard day. i think you are right, signs way back then. and yes there are more and more new members here seeing myoclonous happening at some point in AD. divvi
The twitching was the first symptom noticed here. Like your eyelid twitching only it was in his arms, legs, etc. DH was really worried and upset by it and that was when we first went to the Neuro about it. Neurotin was the first med. Actual jerking didn't start until some time later. They also mentioned it might be Restless Leg Syndrome.
And..........don't forget to count between the jerks/kicks. Once you start, you can't stop. They will jerk at exactly the same count every time. Mine has outgrown the jerks...finally. Outgrown?.......passed this phase????????? whatever!!