For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in

Topic Amantadine Go to previous topic Go to next topic Go to higher level

By AnnaD On 2012.02.02 12:04
My husband has been weaning off Amantadine..Taking one away every 3 days .It has been 1 week and he is terrible. Can't form a sentence and constantly says he is lost. I am thinking of giving him back the amantadine but don't know if I should give it to him all at once or add one every few days...He was originally on 3 per day.

By Reflection On 2012.02.02 14:10
forgive the question - but if you are comfortable answering, I would be interested in why your husband is weaning off the Amantadine.
I know it is supposed to become less effective of 6 months to a year for many, and for some it produces confusion, etc.

On the weaning off - if what you're saying is that he was on 3 every day, then, 3 days later, he's on 2 every day,l then 3 days later 1 per day - I'm no expert, but that sounds like pretty fast weaning off.

By AnnaD On 2012.02.02 15:38
my husband has been on Amantadine for years! That is how the doctor told me to wean him off. Recently, he has been having hallucinations. He is terribly frightened by them. We tried Seroquel 25 mg. which knocked him out so we stopped that and now the doctor told me to wean him off the Amantadine (since amatadine can bring on hallucinations) Yesterday was the first day he had no Amantadine but he has been feeling "off" for a few days already. He comes out of the bedroom, looks for me and says he is "lost" and can't find his way back. I think he is feeling the lack of amantadine and I want to get him back on it but don't know how...I left message for doctor but hoped someone here could help me. Thanks!

By susger8 On 2012.02.03 07:43
My dad had very bad side effects from amantadine - sudden extreme confusion, hallucinations, weakness, passing out. Older patients who have had PD for a long time sometimes experience this, and it's not recommended for them. I know my father had taken it when he was younger without bad effects. I would guess that as time passes for people who are taking it continiously, it might start to cause problems where there were none at first.

He had only been on it for about a week so we didn't even wean, just stopped abruptly. That went okay. I'm not sure what would be the best way to wean. That does sound like a pretty fast wean -- when we were weaning off Requip it was one pill less per week, and since he started with 12 per day it was very slow.

I hope your husband improves.


By susger8 On 2012.02.03 07:57
Sorry, I didn't answer your question about giving him back some amantadine. I think I would try giving him one pill first and see if it helps -- the minumum amount that has an effect would be what I would try for.


By packerman On 2012.02.03 09:35
on the Seroquel, my husband's doctor told him to take it at night.
it does make him drowsy.

By Reflection On 2012.02.03 11:46
AnnaD - thanks so much for letting us know your experience with Amantadine,and why you're weaning off. Let us know how it goes.

Were it me, I'd taper a bit more gradually - if he's been on amantadine for years, his body is used to having it. I am absolutely no expert on this - but were it me, I'd get a pill cutter, and try, say, 3/4 of a pill 3x/day for a couple of weeks,then 1/2 a pill 3x/day, 1/4, etc. And I'd be flexible to adjusting that depending on how he fares.

I'd also try to have at least weekly checks-in's with his neurologist.

By AnnaD On 2012.02.04 01:59
I am so grateful for all your responses. They make me feel like I am not alone. My husband was diagnosed with PD at 36 years old...He is now 58. He had a pallidotomy in 1995 and then a neuro implant in 2001. Both procedures helped with his tremors but it is only the past two years that he has been going down hill. We started the Seroquel because he recently started with hallucinations which unfortunately are frightening to him. The stories he comes up with you would think he was a SciFi fan (which he is not). Since the seroquel did not help with the hallucinations the doctor decided to take him off his amantadine which as I said he has been on for years. I have taken it upon myself to start him on it again because he has been terrible the past 4 days! Since the doctor did not call me back I have decided to give him 1 per day for maybe 3 or 4 days and then go to 2 a day. He already seems more alert. I don't know if the pill can work that fast or if he just knows that I gave him back the pill. I will keep you up to date and let you know how he goes. Thanks again to all your input!!

By LotsaBob On 2012.02.04 15:53
My understanding is that (amantadine) is used as an extender for (carbadopa/levadopa). I have been taken it for about a year now with no problems. Just maybe you should ask you neuro if his (sentiment or C & L) should be increased. But what do I know, I'm a PD patient.

By AnnaD On 2012.02.05 00:43
Today has been absolutely terrible. The day started with him saying that people were all over the house coming to take him away!! Amantadine has never had an ill affect on him and I don't really know if it is just the progression of the disease that is causing the hallucinations. I am going to try to call his doctor on Monday and hope she will call me back. She never returned my Thursday call. I was told Scripps was the best hospital in San Diego. Funny you should mention the sinemt should be increased since at our last appointment she said she wanted to Decrease it! After the week he and I have had with decreasing the Amantadine, I am not about to decrease anything else!!!

By AnnaD On 2012.02.06 22:47
My husband is slowly starting to feel alittle better. He is back on 2 Amantadine per day. I still haven't heard from his doctor and think I will keep him on 2 for a few days before I decide if I will give him his original 3 per day. He is feeling physically better because he actually did some gardening today but his hallucinations are back strong!

By Reflection On 2012.02.07 11:05
This is great news - I'm so glad your husband is a bit better.

I also very much appreciate your letting us know how it goes. Trial & error is scary when the impacts of meds (or lack of meds) is so strong on our loved ones - and so learning from your experience may someday make it much easier for me and my husband. So thanks.

It's unfortunate that your neuro isn't returning your calls. My thoughts aren't worth much, since I'm not on the spot, and not a neuro - but for what it's worth: I don't think your experience necessarily means that you shouldn't gradually wean off amantadine - just that you need to do it much, much slower. If he's been on it for years, his body, and his other medications, expect that amantadine in the mix. Still, as PD advances, for many I believe amantadine is supposed to stop being effective, and contribute to hallucinations, etc. So if you can keep on the two a day, not go up to the 3 (or if you really feel he needs more, try a pill cutter and 2 1/2). And if and when you try to reduce the amantadine, you might consider doing so over weeks and even months, very gradually, to allow his body to adjust, and perhaps, to adjust his other meds.

I'd add - my husband (12 years after diagnosis now) has been on 100 (mg?) Amantadine 3x/day for years - and is still on it. While medication side effects were a major, horrible issue for our family, it was high doses of the dopamine agonists that were the problem. As far as I can tell, the amantadine hasn't been a problem - but he's so secretive, query whether I'd know.

By AnnaD On 2012.02.11 02:22
My husband seems to be slowly getting back to where he was a month ago. I have kept him on the 2 Amantadine for now. He seems to still have the hallucinations but it seems different now. They aren't "ugly, scary people". Now he says it is children or sometimes just "men sitting on his coach". He is not too fond of the men! He usually goes over to the coach and punches the pillows to get rid of them! I have an appointment with the doctor on Monday so we shall see what happens then.

By AnnaD On 2012.02.15 02:55
Went to see the doctor on Monday without my husband in an effort to talk freely. the first thing she told me was the worse is yet to come. After a discussion of how he is doing, I decided that we should concentrate on the dementia for now and handle the hallucinations later since the hallucinations are not "scary" as he puts it...She prescribed Aricept in the am with his breakfast. She is still insistant on cutting down on his Amantadine even though I explained he felt terrible when I took him off it a few weeks ago. She said to cut off l/4 to l/2 every week and see how he goes. She wants to see us in one month.
He actually wasn't too bad yesterday or today. Even though I have been dealing with this disease for so long, I still can't understand why one day is feels terrible and stays in bed all day and one day is seems ok.

By susger8 On 2012.02.15 09:26
The ups and downs are characteristic of the disease, for some reason. They are very very hard to deal with -- each day you just don't know what to expect.

Cutting down by such a small amount per week should make it easier to wean off the amantadine. It does seem like a good idea to try to go off it -- it so often does contribute to confusion.

The mechanism of Aricept can make tremors worse, just look out for that. My dad's mental status improved a lot on the Exelon patch, but the tremors increased to the point where they really bothered him, so we had to stop that. (There are some studies showing that the patch works better for people with PD than other Alzheimer's drugs, just something to be aware of if Aricept doesn't work out.)


By AnnaD On 2012.02.16 21:49
Thanks for the info Sue...I will definately keep a look out for the tremors with the Aricept and I will put "Exelon patch" in my notes for next time I see the doc. By the way,,,today was not a good day..He slept most of the day. Says he feels like he is getting a cold...Feels cold and hot (I checked. He does not have a fever) so we shall see how tomorrow goes.

By AnnaD On 2012.02.20 14:33
Between the dementia and the hallucinations, I think I am the one who will need help soon! Yesterday (sunday) my husband spent the whole say saying "they" were coming to kill him and he will miss us! He went around kissing me and his children and crying all day! Honestly, besides reasuring him that we will not allow anyone to "take" him, what should I do? We just started the Aricept for the dementia but I don't even know how long I should wait to see if it is helping or not...I know I just started it but I don't know....I feel like I don't know anything! I don't know how to help him....I just don't understand why he is so bad one day and not another...He is still sleeping and I have no intention of trying to wake him because I am afraid of what the day will bring...

By LOHENGR1N On 2012.02.20 15:43
AnnaD, You mentioned dementia and concentrating on this aspect of his disease for now? My question would be if He has been seen and evaluated for the dementia or to rule out delirium? These two can and do mimic each other and specific tests need be done to rule out which. I've posted many times on the forum there is a difference and that delirium can be reversed. Sometimes in this busy world and because dementia can come with the progression of Parkinson's Disease Doctors will assume this is what is happening. They're not always right. And although some people develop dementia with Parkinson's Disease not all people do. With His trouble hallucinating and being able to tell which is real and which isn't it would be prudent to find this out before treating a condition which he doesn't have with more medication while in crisis because of the effects of a medication he is now on. It is a muddled situation to sort out but should be if it can be. We all know the trend is to medicate and a lot of patients end up taking more medicines to counteract medications than to treat the disease itself. Take care, best of luck and hang in there.

By AnnaD On 2012.02.25 02:16
As far as I can remember the word delirium has not come up with our doctor. She gave me the choice whether to medicate the hallucinations or the dementia. Although he still has the hallucinations, they have changed and he is not frightened by them now so that is why I decided we should try to help the dementia. I have done some research on delirium since I read your post. The two are so similar...I will bring it up with the doctor when we return because the more I read the more confused I get! As I have been saying, it does seem odd to me that some days his mind is fine and some days he doesn't remember where he is or the names of his children! Thanks for your info

By Reflection On 2012.02.25 07:49
Dear Anna – Lewy Body disease and Parkinson’s overlap in many ways. If you haven’t already, you may find it helpful to check out the Lewy Body site:

Caregiver help: - forum like this - try the “for families” tab

Hallucinations and cognitive fluctuations are absolutely typical of Lewy Body Disease – to the extent that they are keys to diagnosing it. I do think if you are dealing with fluctuating cognition, it is helpful to get some validation that you’re not nuts, this disease is, and that the person with it isn’t deliberately being “on” and “off” both physically and mentally, it’s part of the disease process.
That said – it’s quite hard to tell what fluctuations and what longer-term changes are caused by medication, which caused by the disease itself.
I believe one key to maintaining your sanity is to accept that it’s a very confusing disease, very hard to deal with as a family, and you have limited control over what happens. That said, reading the Lewy Body forum and this one can give you ideas that may be helpful. I believe that simplifying the number of pills can be helpful, but cutting down on medication must be done very, very gradually. While I’m not sure if this would help fluctuations I’d generalize that advice to trying to keep an even keel for all aspects of life – as much as you can. I get migraines sometimes, and I’ve learned that the brain – especially an overly sensitive brain – does not like change. So – avoid dehydration. Try to limit caffine, and keep it constant – if your loved one is used to coffee or coke at a certain time each day, and doesn’t get it – trouble. So if you want to cut out caffine, try gradually lowering the size of the drink (coke, coffee, tea, whatever) rather than eliminating it abruptly. Try to keep blood sugar levels as constant as possible – so try for regular meals or snacks. Try – and this one is darn near impossible with Parkinson’s or Lewy Body – to have reasonably consistent sleeping patterns. Exercise can also help – both short-term, reducing agitation, improving mood, and longer-term, in slowing the disease progression.
I’m sorry you are dealing with this – it’s very hard. Learning all you can may make it a bit easier. And – thank you for sharing your experience, because it helps the rest of us learn from what you’re going through.

By AnnaD On 2012.02.27 16:27
Thank you so much for your comments. Thanks to you, I have joined the Lewy Body forum and can identify with so many of the posts. I agree that the more research we do the better. I have found so many others going through what I am going through with my husband and I have also found some that are going through so much more! I read one post where the woman's husband was convinced she was aggravating his disease and wanted no part of her and she had major construction done on her house to give him a private area! I try so hard to be patient and understanding with my husband but I really don't respond well when he occasionally gets nasty. I don't know how I would handle that woman's situation. I give her so much credit! I don't know where she finds the strenghth! I am so grateful to all of your responses. I don't like to upset my children with details of the day (even though they are grown) and my family lives in NY and I am in San Diego so sometimes I feel so alone but again, I am grateful to all of you that find the time to respond.
You seem so knowledgeable on this topic...Do you mind if I ask if you are a caregiver or a patient? and how long you are dealing with this?
Again, thank you!

By Reflection On 2012.02.27 23:22
I'm glad I was able to be helpful. The disease varies so much person to person and over time, I think the best you can do is try to learn what you can, and decide for yourself whether it applies to your situation or your loved one.

I'm a caregiver. Sort of. Actually, I'm in a situation quite similar to the one in the Lewy Body forum you refer to - he's self-isolating. My husband is now 65. He was diagnosed with Parkinson's 12 years ago - the gait/balance PIGD type, not the tremor type. The gait/balance type tends to be more likely to progress to cognitive/behavioral symptoms. While he has a lot of fluctuations, huge personality changes, growing cognitive issues, hallucinations have been few, and minor.

I've read a great deal, trying to make sense of our situation, figure out how to handle it - both practically and emotionally. It helps.

I've read a lot of neurological literature, and watched/attended neurologists continuing education, which can be useful, since a) there's not enough time in office visits for neurologists to communicate everything that's relevant, and b) I believe neurologists,even good ones, can sugar coat the reality of this disease. They want to convey optimism.

I've also read this & other forums,which has been incredibly helpful to me because it's made me realize that what my kids & I have dealt with isn't just a very difficult family situation, but is not that atypical for this disease. And it's helped with that feeling of isolation you mention. I literally don't think I could have gotten through this without the collective wisdom of this forum. So - I thank you again for sharing your experience, with Amantadine and with Parkinson's - we all benefit from sharing. Good luck.

By AnnaD On 2012.03.09 14:32
First of all I would like to apologize to everyone....I came running to this forum when I felt confused and scared and now that things have calmed down alittle, I have not written,( but have continued to read posts.) My husband is doing alittle better. Don't ask me why because I have no idea and neither does the doctor! On our last doctor visit, when I went with my son (without my husband) the doctor told me the worse was yet to come and to try to once again cut down on the Amantadine. Well, because I already had a bottle of Amantadine capsules, the insurance company would not approve the tablets and I had to wait 3 weeks. Since I was in no hurry to decrease the med, I had no problem with that. I waited. In the interim, my husbands hallucinations have subsided and has for some reason taken a turn for the better. He has not mentioned "the ugly people, the children or the men in the house", and even though he still at times cannot remember where he is or where he is going, he is doing better. We did start Aricept 23 mg on February 15. His doctor is saying that is why he is better. I think he started doing better before that but who am I to argue. The fact remains, he is alittle better and I definately am thrilled. I am no fool though, I know it is day to day but I feel that I may be better prepared for what is to come. I am very grateful to everyone who responded to me and continue to read the posts every night. I find great comfort and information in them!

© · Published by jAess Media · Privacy Policy & Terms of Use
Sponsorship Assistance for this website and Forum has been provided by by people like you