My father has Alzheimers. My mother and he live in the same facility...though she is in a wheelchair in assisted living section...and he in the locked down memory wing. They've been very happily married for 65 years! They have been living in this facility about a year, and my father has developed a female friend/patient in his wing. They hold hands, like to be with each other, etc... My mother is very jealous (and she really was never the jealous type)....but #1...her 'mind' is starting to slip, too....and it is just plain hard to her to be in a wheelchair and see this other woman giving my dad so much attention..and having it returned. Dad knows Mom most of the time...and while sometimes he thinks she's his mother....he pretty much knows her....but it has caused great agitation between them... so much that Mom is not allowed to go visit Dad on his wing anymore. Their visits must be supervised elsewhere in the buiding...and it is breaking her heart. She sobs uncontrollably, etc... She has had some counseling....and though her doc does not like to medicate in situations like this....he is trying her on Neurontin...which has been used for other things...but has also proved helpful in situations like Mom's. Has anyone had any experience with Neurontin?
The issue of Alzheimer patients developing other relationships is very common, although heartbreaking for the non-AD spouse. I am including some links to article and the topic on our message boards relating to that.
As for Neurontin, I don't understand why he is prescribing that for her depression. It is an anti-seizure drug that is used to control nerve pain. My husband was on it for the pain related to his diabetic neuropathy. I would absolutely ask the doctor why he is prescribing it, and what he is expecting it to accomplish.
Google Neurontin, and you will find a lot of information that may be helpful to you when you talk to the doctor.
My husband also is on Neurontin. His was ordered for nerve pain related to injuries received in a car accident. He seems to experience extra fatigue with it, but when we try to taper the dose, his pain worsens. I can't imagine how it would relate in this situation. There are many anxiety drugs that would fill the bill if that's what the goal is. I sure would ask for a clear explanation.
Did some quick googling ... neurontin is thought to sometimes be helpful in managing agitation in AD patients. I didn't spend much time, but it appears that this is an "off-label" use, and that the manufacturer has been disciplined for pushing "off-label" use of this drug for other applications (not sure if this included mood stabilization in AD).
Neurontin has some serious side effects, including the highest drug-related suicide rate, which, according to some, "more than outweigh the undocumented benefits". See: http://www.ahrp.org/infomail/05/08/16.php
On the other hand, I found some posts where the doctors thought that neurontin slowed the decline of cognition. (I don't know how you could possibly determine that without a controlled clinical trial with a lot of patients enrolled, though, so I wouldn't trust these opinions.)
Given the serious side effects, perhaps a drug that is specifically used as a mood stabilizer or antidepressant should be tried instead. Antidepressants commonly prescribed for AD patients include Prozac, Zoloft, Paxil, Celexa, and Zyprexa. Mood stabilizers include lithium and valproic acid.
Flagirl and Briegull, both of you said your husbands were on neurontin? mine has been on for a month too for the myclonous. was wondering i know briegull said she upped the dose to 3x100mg correct ? i would like to compare how you are giving and what times? today my husbnad had a couple of new jerks which he had not had in 4wks even with the 100mg in the 5am dose i gave. so i gave about half a capsule or approx 50mg additional at 7am as they were continuing. i willl call neuro tomorrow to see how to administr if he wants to up the dose, but just wondered how much and when you are giving the drug..do you give at various times or all in one dose?i dont think briegull has the myclonous just aggitation? i also noticed it seems to work pretty fast, and seems to actually last @6-8hrs i think per dose. your input would be helpful. thanks=divvi
MY husband has only been on the neurotin for 4 days and I can't say I've noticed a lot of difference so far. One of the muscle jerks shook the coffee cup this morning so that half the coffee spilled onto the talbe. He takes it later in the evening to space it out from the Seroquel (dr said to do that). But he only takes 100 mg. It's supposed to be mainly for the myclonous; I would be pleased if it also helped with the agitation. Initially, the Seroquel seemed to be calm him somewhat, but he's been very anxious, pacing, not sitting, worried,etc. lately. I haven't noticed any side effects from either of them. If I don't see improvement in the next few days, I'll contact the neurologist and see if it should be increased. Something has to calm this poor man down---it's driving us both crazy!
wow, nikki, thanks, that makes me less anxious:) aww ours is 150mg and he seemed to sleep more this afternoon just from the 50mg more. i knew this drug goes to high dosage just didnt know how much. thanks! and fgirl yes it works for aggitation some too i have found.stick with it for the week and then call the dr. it takes a while so dont lose patience. these are powerful drugs and the body needs time to adjust- maybe your husband may need more than the dose hes getting too in a week or two-i think dr will up my dose here too maybe tomorrow. 100mg is the lowest dose possible.it worked fine for a month. divvi ps seroquel did that to my husband as welll made him more anxious and i couldnt stand it. they say it also needs a few days to adjust to that one as well. good luck!
your welcome divvi :) As with most drug the initial side effects often fade and become more tolerable. I was started out on a high dose, 900mg due to severe nerve pain. At first I was very tired, etc, but it did go away. I have been taking the 3600 for almost 6 years and I have no issues from it. But as we all know, we all react differently to medications. I am so grateful Lynn had such a fast positive reaction to the seroquel! If he hadn't, i would have kept trying any and all of them!
The best part of this website is hearing from people giving the same drugs for the same symptoms and being able to check on how long it takes to work, side effects, etc. You just couldn't get this kind of information from a dr!! Thanks!!
Mine is on 3 - 100mg capsules, which I give him all at night. It does seem to have calmed the agitation. But today was not a good day, he was VERY slow moving, so I'm not sure if that had anything to do with it. I'd not given him the seroquel for a couple of nights, but tonight he was so wound up and confused that I did give him one.
A week from this Thursday, on the 13th, I have to go back up to Maine again, coming back on Sunday. Short of his going to the hospital the night before, I'm going to do it, and ask my son to be the person to call if there's a problem. When I come back, I think I'm going to really slow down on pressuring him to get up, put on his elastic stocking, shower, etc. Just let him rest for a few days.Then we'll see where we go. We're getting pretty close to my not being able to physically manage him.
Tomorrow is his 84th birthday. Oh really? he said? Poor baby.
Does anyone give the neurotin and the seroquel together? The neurologist recommended the seroquel early in the evening and then the neurotin a couple of hours later. But if DH falls asleep in the meantime, it's very hard to get him to take the capsule. I'd rather give all the night pills at the same time so I remember and it's all done.
I've been giving him the neurontin at dinnertime and the seroquel an hour later, at bed time.
The visiting nurse service (pd for by medicare after his hospitalization) is earning its keep.
This morning the nurse came. Said you're doing a good job. This afternoon the social worker came. Said you're doing a good job. Husband came down to meet her (at my request; he'd gone up to bed at 1 pm - I thought a nap but he'd disrobed down to depends and t-shirt; I got him to put on pj pants). They also arranged for a new wheeled walker to be delivered. He decided that was his birthday present. The California son sent him a little pocket knife of the kind he likes, and he managed to get the sherry bottle open without mangling the top, so I guess it was a good day.
Both nurse and social worker said GET MORE HELP! and I agreed that when I come back from ME (WHEN I COME BACK) I will!
I'm okay. I watched Christian the Lion and had a nice weep, for the fifteenth time or so.
Fgirl, how are yall doing on the neurontin for the myclonous?? been thinking about you and hope its working for you! my DH has been on 150mg i empty the capsule into a plastic bottle, then add teaspoon of water then add a teaspoon of gatoraide for taste then give at 5am. its been working ok but today i have to give the rest, 50mg additional at 9am as he had some jerks first time in a while. its hard to know when they will come on again. but so far the gabapentin is working mostly. hope its helped your hubby. divvi
I have been on neurontin for about 18 months I take 150mg at bedtime. I was told I could take up to 3 of these a day. I tried two and was so dizzy during the day that it was not worth it. I take it for nerve pain and it did help, but now I think I need more. I know it is given for many different problems, but had not heard of its being used for AD. maryd
mary its being given as an anticonvulsant for myclonous jerks associated with AD, (brain spasming) a couple of us here have spouses which take the neurontin for this, so far its helping, but as time progresses i think the doses will have to be increased as well. thanks for your input. divvi
When I told the neurologist that the 100 mg dose wasn't helping much, she prescribed a 300 mg capsule to take at bedtime. I can't say that it's make them go away...maybe less often and less violent. He still has them more in the early morning (4am bathroom call) and to a lesser degree during the day. She said I could give him 100 mg in the morning if needed. I'm waiting until after we go to visit my mother (in Port St. Lucie, Joan!) in case of some weird reaction. But this morning he had a strange thing. He had a terrible time standing up at the bathroom sink while I shaved him, was just tilting forward. His speech was slurred and he was confused. it lasted until about noon and then he was pretty much back to what he had been. I wonder if he's having TIAs when that happens. He does seem to be tilting to the left a little more than he was. It doesn't help that I think he's developing a cold. He is unable to understand what a cold is and why he is coughing and all stuffed up. Unfortunately, it creates an even greater need for MORE Kleenex...should have bought stock in that company!!
Is it bad that I didn't rush him right to the ER to find out what was wrong? I just figure that whatever happens is going to happen and we'll deal with the results.
My DH had these jerks last night during his sleep. We usually sleep "spoon" fashion and he woke me up jerking. This is the first time this has happened. He didn't wake up so I know he didn't even know he had them and I haven't mentioned it to him today. A couple of weeks ago his right hand was jerking when he was taking a nap. This is really something new to me. Guess it is just another "phase". Does anyone know where you can go to read about it?
Thanks so much Sun for all the sites. Guess this is just something new that probably will get progressively get worse. We have an appt. with his neuro on Tuesday so I will tell him about this.
Sorry Fgirl, hope the higher dose helps. we are increasing it as well if needed. i gave 200 mg, 150 at 5am then 50mg more at 9am. i guess there isnt much to do like you say it is going to progress regardless what we do - it does sound like it could be TIA esp the slurred speech is not a good sign. maybe the meds are causing it?. at least maybe call the dr on monday and tell him. he may increase or decrease as needed. good luck to you both, divvi judith, seems the jerking can be part of progressing AD symptoms as some of us are having these jerking issues in our AD spouses. whatever is going on in the brain is misfiring electrical impulses is how i describe it. my DH started with body twitching in the sleep time too, then it progressed to body jerking. i can deal with alot of the AD issues but this one thing is quite alarming and i hate it. divvi
JudithKB, My husband also has Myoclonic Jerks. He has FTD. His Neurologist prescribed Keppra. He has been taking it for about 3 weeks now. He hasn't had as many so the medication must be helping. He takes 250 mg daily 1/2 in the morning & 1/2 at bedtime. After a week he was suppose to increase to 500mg a day, which I did, however, he started being very confused in the morning, so I have cut back to the 250 mg.
Kadee, so glad the keppra is working for you. i found increasing in smaller increments maybe helpful. maybe 50mg at a time to see how it affects them. i know the higher the dose the harder it is on them to get used to. pharmacist said it takes about a week for the body to adjust to it all. i am so sorry you are having to deal with the mjerks too. isnt it awful, you feel so bad for them? but i am comforted to know i am not dealing with it alone now. fgirl you and I so far and maybe judith. i like to compare notes as we go...my best -divvi
divvi, I too hate those Myoclonic Jerks. Sometimes they are so violent, my husband has bite the sides of his tongue numerous times. His teeth chatter sometimes too.
My DH is always spilling the coffee as over when he has the jerks. I usually yell before I remember what causes it! I will call the neurologist and see what he thinks although he seems to be back to "normal" (whatever that is!).
Bluedaze, I'll be getting to PSL at about noon on Monday and then my DH and I are taking my mother and father (bad with Lewy Bodies) out to an early dinner for their anniversary---I told her to call ahead to the restaurant and ask for the "dementia corner" for us! I'm leaving at about 2 on Tuesday, but would really like to figure out a quick meeting. I would really like my mother to meet you and Joan---although she's lived in PSL longer than I've lived in The Villages, she doesn't have as strong a support system as I do. I'm thinking maybe around 10 on Tues morning for a quick cup of coffee somewhere? Is it possible that it would work? If I can't get my Mom to come, I'll come. I think that the woman who takes care of my father in the morning would keep an eye on my husband---nothing is ever easy with this disease---like arranging for child care! OF course, it's a little complicated by the fact that I'm bringing my 2 dogs, but they are actually easier to deal with! If it doesn't work this time, I am planning a 2 day visit sometime in September without my husband and would be a little freer without worrying about him. So don't rearrange...I can give more notice next time. This was a quick trip since my mother is so devastated that it's their anniversary (57th!).
Sounds good, bluedaze---I'll let you and Joan know as soon as I have the dates. It will be during the week. My mother is very anxious to meet you, also. She actually said you could both come to her house if it would be easier. Susan
judith, DH has only been having these body jerks (i call them this but its the brain spasms) for around 6mos or so. he is late 6 early 7ish. seems everyones neuro says its 'just the disease progression"...but he did exhibit arm/leg twitches much earlier in the disease. seems they develped as the disease progressed. my most uneducated guess is the brain is being destroyed in specific areas and the cells/neurons dont function and misfiring is going on causing the brain to 'spasm'..strange because DH bladder spasms as well and we have meds for that too. its not something those of us dealing with it, wish on anybody. its scary and scares the beejeebies out of them and us! divvi thetwo meds that help from the posts are neurontin and keppra in small doses but unless the jerks are interfering in his ability to function i would hold off til later. or talk to your dr about it. divvi
My LO is in early sage 7 and his arms have been jerking once in awhile the last 2-3 weeks. I'm not alarmed and I did mention it to his Hospice nurse. He s not on meds (yet).
My DH got so bad with falling, lack of balance, unable to walk without me next to him that I called the neurologist. They said that it could be the gabapentin so I stopped it. What a difference...first of all, he's not jerking more, he's jerking less! He is almost miraculously better at walking, no falling, etc. I knew that the side effects could make him dizzy, but I figured it was a trade off for reducing the myclonic jerks. That was definitely the worst medicine to give him. I really can't believe the difference in a day without the med. We'll have to try something else for those jerks..although they don't seem so bad now after the last few days of true helplessness.
sorry Fgirl -maybe some other med like the keppra could be added later for the jerks. we do know each one of them is so different with regards to what can be tolerated. alot of these meds used for things for AD can cause loss of balance, dizziness, etc. glad your DH is better off it, let us know how hes doing-divvi... you are right the exchange for falling and loss of balance isnt worth it -
My DH is doing so much better with just one night without the gabapentin. Even his personality seems to have come back. He's actually back to doing more pacing and moving things around, but that's really better than falling all over the place. He has the beginnings of a real bad black eye from where he hit the nightstand while falling out of the bed! It's really strange how the same meds for the same symptoms affect them so differently. And my neurologist seems so hesitant to give us anything. When I read on this website how many different medications are used and how different all the reactions are, I know it's a real trial and error. BUT...there are some really successes with some of these meds. Thanks for the info...I will ask about trying something else once we get this out of his system!
Magnoliarose, I also read your DH has the myclonic jerks from another post. he is on neurontin too? those of us with spouses having these jerk issues are keen to input from others with same. what dosage is yours on and how long, and is he doing better? i am seeing my DH has had a couple of rounds yesterday of several in the early A>M upon awakening, and i have his reg 150mg at 6am which didnt help so gave 50mg more. seemed to calm it down. i am thinnking they become tolerant to doses and then upping it helps again. we have neuro appt next week and i will discuss how to dose higher as needed. divvi pps. Kadee and Fgirl how are your spouses doing with the jerks?? any updates? kadee i know you are on keppra..
Divvi, He still has the myoclonic jerking, however, I think the Keppra has decreased the number, also they are not as violate. He is on 500 mg. a day. I did read on another board that some have thought that Keppra caused too much rage, which has really concerned me since he has FTD, however.....I am almost afraid to say this, but he has not had any episodes lately with rage.
Kadee glad its working, i know exactly what you are saying about 'jynxing' yourself. seems everytime someone asks about DH and says 'oh so glad hes doing well' then something happens. i keep my mouth shut now..divvi
My husband couldn't not tolerate the neurotin. He was so clumsy, uncoordinated, and confused that I really couldn't take care of him. We took him off it and he was better; I don't think it was even cutting down the jerking. However, in the last couple of weeks, the jerks have gotten worse...more often and more severe. He hits his arm really hard against walls, objects, etc. and says, "Stop it". I think he sometimes thinks that I'm doing it and tells me that I'm hitting him. We have another appointment with the neurologist and I'm going to ask him about it. However, that is the dr. we are seeing for the study on the Exelon patch. I am going to see a local dr that many people in my support group like a lot. I'm interested in what she has to say about it. My DH is really getting upset about how much difficulty he's having with everything. He's so low, yet he is still able to understand much of it...not a good combination. And in top of it, I just drove us up to New York to visit his sons (OK, also so I could go to a dog agility trial with my old agility club) and he's really out of it. I was smart enough to make it a week long trip rather than 2 weeks like last May. And I think this might be the last trip for him..he isn't really able to get around well and eveything is a struggle.
Fgirl, so sorry to hear DH isnt better with the jerking lately. i know what you mean about feeling so badly when they have them and you are helpless. maybe your dr can recommend another rx that can give him some relief. and yes, my DH has had more significant and strongr this week as well. lets blame it on the full moon effect for now:) i hope there is something they can do to help him out soon, glad your week trip went well-i am also at the point where only overnite trips are ok with Dh nothing longer as he cant handle it either- my best, divvi
divvi, my husband takes the generic neurotin gabapentin 300mg at bedtime. It has helped alot with the jerks but not stopped them completely. I may need to up his dose soon. He has the jerks worse at night,during the day only a few. Hope this helps you.
Magnoliarose, thanks its always helpful to compare notes on this subject. my DH has them almost exclusively upon awakening after deep sleep. wierd, and scary. he also takes gabapentin 200mg at 5am i give it so he has a couple of hrs with meds before getting up in the am. its working but like you say they become tolerant and then the jerks startup. i was giving 50mg about 4mos ago and we have advanced to 200mg. i have appt with neuro next week and will see now to dose more if needed. i think prolly before bedtime if he needs more so it wont be too much all together in one dose. divvi
divvi, i have begun to notice as it gets near the time for his dose the jerking starts. I wonder if its something that wears off. we are not seeing a neurologist at this time due to fact he is rapidily progressing and our gp can handle the situation at present. She believes at this point that we treat the symptoms as there is no slowing it at this point. I just pray that he is unaware of his condition.
I kind of know how your mother feels. Don't laugh at this..my cat, the one I saved from death and that has always been my cat, would hop in my lap now just ignores me and goes to DH...so even though Ebonie is just a cat, she has been my buddy during these difficult days of continual loss..now she is his cat..
Never heard of Neurontin being used for agitation in a patient with dementia or, as a sedative. Lots of medications have other uses that have been discovered besides that for which they were developed. (I believe that Rogaine....the hair restorer...was at first used for high blood pressure? Then it's topical benefits were discovered). I am taking very high doses of Neurontin to control nerve pain from my accidents. I can't take narcotics (except in the most extreme situations....like on the way to the hospital!!). I take 600mg. three times a day. Pretty much the highest dose prescribed. I've not noticed any ill effects. Of course, the meds I take would take a bull down!