Amantadine side effects for anyone?? - Cure Parkinson's

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Amantadine side effects for anyone??

Boyce3600 profile image
51 Replies

My husband is currently in the hospital for severe bowel impaction having had about a dozen enemas in 10 days it's 3/4 removed he has been started on amantadine and is having issues with reaching out fidgeting with his clothes with the bed sheets just looking like he's internally nervous does this sound like anything anyone else has had on amantadine it's 100 mg twice a day 4 hours apart

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Boyce3600 profile image
Boyce3600
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51 Replies
park_bear profile image
park_bear

If amantadine is doing that to him then I recommend he stop taking it - as with other Parkinson's meds it is purely for symptomatic relief.

Parkinson's drys out the G.I. tract from one end to the other. I suggest consulting with his gastroenterologist about giving him docusate sodium which restores moisture to the fecal material. This is an over-the-counter product. I take 250 mg of it twice a day to help prevent this problem. The other thing I take is high-dose thiamine, which restores bowel peristalsis.

Boyce3600 profile image
Boyce3600 in reply topark_bear

yes he does take thiamine injections but only one 50 mg day. Dr C directed us thru other doses and this seems to be the best for my hubby. By late afternoon tho he is drained of energy and so ready for bed by 5 p.m. The hospital visit for impaction led us to Rehab and the PM & Rehab Dr wanted to try Amantadine to try to get him to be more alert to respond better to the PT and OT. He started Rehab 3 days ago . He is daily taking cholase, Linzess, Lactulose and as needed a suppository, Milk of Magnesia, Senna or Senecot. His regulariity is about one BM every 3 days but they want to get him to one no more than every 2. I am so frustrated i can imagine how he feels. I am right here with him 24/7 unless I have one of our caregivers relieve me for a few hours. When in hospital they gave the Thiamine in his IV, which he had because of double aspiration pneumonia as well. So for 7 days he was on antibiotics and they used the IV to put the Thiamine in. When they took out the IV for him to come to Rehab they switched it to a pill and I know that the 50 mg pill is not nearly as bioavailable as the injection. I guess I should ask them to give him a shot every day although he's getting one in his stomach to prevent blood clots already I hate to put him through more misery but I know I've seen the Thiamine work for him at home when I give it to him every single morning. I'm just so frustrated. As for the Amantadine, I think a reduction in dose is warranted to see how alert he can be and to see about the fidgetiness. etc. They also started him on Baklefen.

park_bear profile image
park_bear in reply toBoyce3600

Per Dr. Costantini:

" Thiamine administered intramuscularly is 100-140 times stronger than the equivalent oral dose, depending on the personal patient's absorption. So, for example, to have the clinical effect of 1 im injection once a week, we have to administer 2 grs orally each day for 7 subsequent days."

So the equivalent of a 50 mg daily shot would be 2 1/2 g by mouth twice a day.

I do believe that oral thiamine is more effective at inducing bowel peristalsis because it is in direct contact with the intestinal tissue. I find that the peristalsis induced by thiamine is more natural than that induced by Senokot. So, something to consider.

aspergerian13 profile image
aspergerian13 in reply topark_bear

Park_bear,

The Constantini quote and your gastro peristalsis notion merit attention.

Boyce3600 profile image
Boyce3600 in reply toaspergerian13

can u suggest best route to do this

park_bear profile image
park_bear in reply toBoyce3600

I would suggest that once the impactions are cleared to try oral thiamine (along with the docusate sodium) and see if it improves his bowel peristalsis.

Juliegrace profile image
Juliegrace

Did he start the Amantadine before the impacted bowel?

I have been on Amantadine since August, supposedly to help with dyskinesia. I'm not sure it has had any effect on that, but it has caused constipation. About 4 weeks ago I stopped taking it, but after 3 days I felt really awful so I resumed at 100mg twice a day and felt better overall but was still constipated. 10 days ago I reduced it to 100 mg once a day and the bowel issues have improved dramatically. The fidgeting sounds similar to my left hand/arm dyskinesia, but that predates Amantadine for me.

park_bear profile image
park_bear in reply toJuliegrace

I quit amantadine after only taking it for a short time because it aggravated my dry mouth condition. Based on your report it seems it can dry out the G.I. tract from one end to the other.

Juliegrace profile image
Juliegrace in reply topark_bear

I concur with that description.

ConnieD profile image
ConnieD in reply topark_bear

I do take amantadlne originally it did seem to help dyskinesia but for a short time. I still have taken it thinking maybe it helped a little. Now I’ve looked up some of the side effects and they are pretty scary from visual difficulties, cardiac issues, and it says you’re more prone to melanoma and should be checked regularly by a dermatologist. Correct me if I’m wrong but I thought with PD we are already prone to melanoma. I jdon’t think I want to take this anymore it seems at least for me the risks outweigh the benefits! So sorry your husband has been through so much!!

park_bear profile image
park_bear in reply toConnieD

Yes you are correct Parkinson's does increase melanoma risk.

Boyce3600 profile image
Boyce3600 in reply toConnieD

thank u for ur concern. He is trying so hard to bounce back from this Hospital stay and doing fairly well im Rehab considering it is only day four but honestly I mean he's lost so so so much weight I'm really concerned

ConnieD profile image
ConnieD in reply toBoyce3600

Just a thought but I remember when my dad had a small bowel obstruction and he lost a lot of weight too. My sister who is a nurse said he didn’t have an appetite but he still liked peanut butter and she felt it really helped him packed with calories and protein when he came home from the hospital. Not sure if your husband has been able to eat, but maybe it could help him too. He’s in my prayers ! 🙏

akgirlsrock profile image
akgirlsrock

Anxiety, I just started All this worrying and crying , it comes in waves and crying, it feels like a chemical imbalance and Dystonia scares day's prior, Amantadine never again for me it dries you out, my mouth was so dry. They finally gave me One slow release 50/100 and something to put me asleep I slept for 12 hours the best sleep I've ever had. Now I have anxiety pills, had to take one today, I just can't seem to control this anxiety.

Boyce3600 profile image
Boyce3600 in reply toakgirlsrock

i hope it gets better. thank u for info

akgirlsrock profile image
akgirlsrock

Amantadine I used 4 times, doesn't seem to help and my mouth is so dy I cant swallow, no more for me.

LAJ12345 profile image
LAJ12345

For anxiety try hardy’s Daily essential nutrients and hardy’s Inositol. My husband’s chronic anxiety ( to the point of being suicidal) stopped within 3 days of starting on these, and 2 months later he is still feeling great.

parkie13 profile image
parkie13 in reply toLAJ12345

Thank you for posting, again and again. Mary

Boyce3600 profile image
Boyce3600 in reply toparkie13

I've lost touch because I've been so very busy with my husband but are you the one who asked me about the Raynaud's syndrome if you are the doctor did indeed say that's what it was and it would get better in the warmer months

parkie13 profile image
parkie13 in reply toBoyce3600

Sorry, no I'm not.

rhyspeace12 profile image
rhyspeace12 in reply toBoyce3600

I once mentioned that the symptoms sounded like Raynaud's.

LAJ12345 profile image
LAJ12345 in reply toparkie13

Hope I’m not being too repetitive but I think not everyone reads every post.

Boyce3600 profile image
Boyce3600 in reply toLAJ12345

where do u purchase the Hardy's

LAJ12345 profile image
LAJ12345 in reply toBoyce3600

I am in New Zealand and got them from a place called nature zone, but here is the site for US or Canada. hardynutritionals.com/produ...

If you are somewhere else try the Canadian free phone number and talk to them about how to order it. You need the ok from your GP or psychiatrist as they work so well you may need to taper off pharmaceuticals shortly after starting taking them.

Boyce3600 profile image
Boyce3600

did u mean to try this and keep him on Amantadine or instead of? He wasnt doing these things prior to starting Amantadin. He did exhibit very similar befavior when on Rivastigmine whuch he ended a long time ago

NanCyclist profile image
NanCyclist

I take it 100 mg 2/day, 12 hours apart. The doc emphasized the 12 hour interval. I’ve had no negative reactions and my dyskinesia has pretty much stopped. I’ve only had it for 3 days.

Boyce3600 profile image
Boyce3600 in reply toNanCyclist

So the 12 hours apart does not interfere with your sleep

NanCyclist profile image
NanCyclist in reply toBoyce3600

i’m sleeping 7-8 hrs/night.

ion_ion profile image
ion_ion in reply toNanCyclist

Is amantadine still ok for you? I want to try it but I'm reluctant.

NanCyclist profile image
NanCyclist in reply toion_ion

I reduced my dose from 1 pill morning and evening to only one in the morning because I had hallucinations from too much. The hallucinations stopped immediately. The dyskinesia has also disappeared almost completely (certainly well within acceptable limits.

Boyce3600 profile image
Boyce3600 in reply toNanCyclist

what dosage are u taking? Can u describe the hallucinations...visual, auditory, etc? My husband does not speak so I dont know for sure what he might be experiencing. Thank u for ur help

NanCyclist profile image
NanCyclist in reply toBoyce3600

I’m sorry to hear about your husband. I can imagine he is experiencing extreme frustration if he’s not speaking. I have 100mg capsules which I take once per day. I just had one hallucination (which was enough to make me stop even before I reached my doctor. I was asleep and then thought I was awake. My room was filled with gossamer creatures floating around. There is a desk about 10 feet from the bed. I leaped out of bed and was about halfway to the desk, waving my arms and babbling something when I woke up and realized what was going on. The “beings” were not fearsome or threatening in any way. They reminded me of the northern lights. They were gone the moment I woke up and have not returned.

I hope this helps.

Boyce3600 profile image
Boyce3600 in reply toNanCyclist

oh mercy.. yes it does help! Hubby is now on 50 mg twice a day down from 100 twice day for a week.or less because I figured he was seeing something the symptom was he was reaching out and just very active in his body just like you know wanting to get up and move around and he can't get up alone . he's just so trapped.

jcavana profile image
jcavana in reply toNanCyclist

How long were you on amantadine before that happened? My mom just had her first hallucination after being on 2 pills a day for 6 weeks.

NanCyclist profile image
NanCyclist in reply tojcavana

I see this thread is from about a year ago. I went up and down on the Amantadine, finally settling on 2 100 mg capsules a day, 12 hour intervals. I'm still getting 7-8 hours of sleep/night and about a month ago my little gauzy friends returned for only a couple of weeks.

Oceanflow profile image
Oceanflow in reply toNanCyclist

Just curious if you also take Sinemet (or equivalent). I took amantadine twice a day but it was interfering with my sleep, so I cut it back to once a day in the morning. I take 4 to5 Sinemet pills (CR 100/25)daily plus one rasagaline pill in the morning. I don’t know which side effects I can attribute to amantadine but I also have dry mouth and major constipation issues!

NanCyclist profile image
NanCyclist in reply toOceanflow

I take 6. 25/100 Sinemet each day and was getting dyskinesia so the doctor raised my Amantadine , 2 capsules / day. dyskinesia stopped, replaced by dry mouth and intermittent constipation. The trade off is worth it.

AmyLindy profile image
AmyLindy in reply toNanCyclist

😳

Jzucki2 profile image
Jzucki2

I’m on the same. dossage and 1g of b1. I also take miralax with no bowel problems. I do figet in bed and have restless sleep

Boyce3600 profile image
Boyce3600 in reply toJzucki2

so happy its working for u. Talked with dr this a.m. are going to try 1/2 dose.....so 50 mg twice daily ..4 rs apart, beginning tomorrow.

Juliegrace profile image
Juliegrace in reply toBoyce3600

You can get the pediatric form which is a liquid which allows you to measure out smaller doses. It's also really inexpensive.

Boyce3600 profile image
Boyce3600 in reply toJuliegrace

hmm thank u. he is stil awake and this happened last 2 nites too cant get to sleep

does it affect u like that

Juliegrace profile image
Juliegrace in reply toBoyce3600

My sleep is never good. I stop taking meds between 5-6 pm and go to sleep in an "off" state because I have so much dyskinesia when "on". I am weaning off the amantadine because it caused constipation. I used to take it around 10 am and 2 pm and I don't believe it affected my sleep.

AmyLindy profile image
AmyLindy in reply toJzucki2

Miralax is key-the gastroenterologist says ok to use it daily 🧐I was surprised by that! Mix 1 capful in any liquid, any hour.

SELFMeder profile image
SELFMeder

Since I started taking Colace (50mg) and Muralax (1 bottle cap full) 1-2 times a day as needed, I have eliminated constipation altogether with these over-the-counter supplements. I also eat a prune before bedtime.

What a relief🙉

Boyce3600 profile image
Boyce3600

what a blessing...simple and inexpensive. great!

rhyspeace12 profile image
rhyspeace12

My husband had a bad impaction and horrible constipation. He was put on Linzess by his gastroenterologist. Without insurance it is very expensive, but I made each capsule into two capsules with empty gel caps found at Amazon, and it works just as well as a full dose. He takes it each day, along with Miralax, and it is working well.It got rid of the impaction without enemas.

Boyce3600 profile image
Boyce3600 in reply torhyspeace12

yes I think I read that it won't be till 2020 when a generic for Linzess might be available. I am relying on samples from doctors . I agree it works very well. Currently he is taking Cholase twice a day, Lactulose 1 time day, Linzess 145 mg once a day and Senecott once a day. As needed Miralax and suppositories. We eat healthy I thought. I know broccoli and cauliflower are good naturals to eat for constipation.It's very difficult to coordinate all this on top of PT, OT caregiver schedules, meal times, bath times, bed time, etc etc, etc. I am so exhausted. This is year 6 for us, not since diagnosis but since I knew something was amiss.

rhyspeace12 profile image
rhyspeace12

I agree with how you feel exhausted. I'm 77 and I'm keeping pretty fit, having to be on call, and running around all of the time. ( I had my wisdom tooth pulled a few days ago, I lay down to rest, and was woken up with my husband telling me that HE ," can't sleep.") It's the best weight loss diet in the world though, I eat whatever I want and lately I've lost 3 pounds!

If you want someone to listen, I'll send you my email address. I can't remember how long ago we learned his diagnosis, but, probably at least 6 -7 years ago.

Our life revolves around what ever doctor appointments are coming up.

I plan my day, getting chores done, and then i sit down in front of the television in the evening and color and color with my gel pens and pencils. It is so relaxing and addicting.

Boyce3600 profile image
Boyce3600 in reply torhyspeace12

of course i would love to get ur email and converse. if u know how to do that privately on this site pls do so i will look forward to getting it

rhyspeace12 profile image
rhyspeace12

Write to me at raeannn@hotmail.com. I will delete this address from this site after you do.

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