Terese,Is the neurologist absolutely positive that Dorothy has P.D as it seems a very long time to only have tremor as an only symptom?My husband has tremor as his only real sign of P.D but after 3 years there are other little indications that it is P.D not Essential Tremor.

I've had good luck with the Amantadine since I started it back at the end of April. I was given it for the little bit of the energy boost, and it made a big difference in my overall well being. I was peetering out by Wendesday, and groveling through the rest of the week until the weekend so I could rest and regain my strength. I mentioned this to my neurologist, and she prescribed the Amantadine. She started with 200mg and was told to increase to 300mg if I felt it wasn't working. I went for about 5 months on 200mg, and eventually up to the 300mg where I am now. I have not had any side effects from it either including the brain-fog, which is pretty common. Birte I know what you mean about the wooly feeling. Mirapex did that to me.

In the process I also found out what happens when I am off of it. I ran short one day on my prescription, and waited until I was going home from work to pick it up. As usual I ended up staying late, and by the time I left work, I had the tremor in my right hand, my right leg, and my jaw, and on top of that the dystonia started in my feet! That one little red capsule made a big difference!


@EnglsihCountryDancer - I would definitely inquire with the doctor as to why he thinks this is not a good thing to take.

John

Do you mind if I ask what the timings are on a typical day for your 300mg.
I have just increased from 200mg to 300mg and am interested in the timing of
other people taking this amount.

As an aside in the two years I have been taking Amantadine I have had only 1light cold. Now I know as an anti viral drug it was originally approved to help protect people against one strain of influenza and colds are different but it's an interesting coincidence. Especially as my wife is a teacher and brings home plenty of colds for me to catch.

Chris

ECD...yes...two neurologists, one a Movement Disorder Specialist, diagnosed Doreen with PD. It took the MDS TWO hours to absolutely confirm the PD dx because Doreen's symptoms were so slight...and, in fact, the MDS termed Doreen's PD as the "garden variety" type, i.e., very ordinary and, in fact, stated that tremor might be her ONLY symptom with the PD...the most difficult to "control", but with the least probable devastating outcome. This, too, was confirmed by her present neurologist who has stated that he has some PD patients who have had PD for many, many years with only a tremor having emerged as their symptom...so, we are hopeful that it will be the same with Doreen. Eventually, she did experience some micrographia and lessened arm swing in her right arm (she had right-handed tremor for many years without its moving to her left hand (which is still minimal). Once she started the Sinemet, both her handwriting and the arm swing returned to normal. It is just recently that her tremor (she is right handed so that having a tremor in her right hand has begun to be more than a nuisance, especially in that she assists an ENT doctor and she feels it's interfering with her work somewhat)...thus, her neurologist attempting to "zero in" on the tremor...first with the Cogentin which certainly did eliminate the tremor, but caused such cognitive problems...and now, the Amantadine.

John...Thank you for a very supportive and helpful message related to Amantadine. Doreen spoke with her neurologist this a.m. and expressed her concern about taking 300 mg. daily (due to the horrendous recent experience we just had with the Cogentin and given the information that we've read that Amantadine CAN cause cognitive impairment, though not to the degree that Cogentin did..still, we are so leery). Although he would prefer to have her increase from the 200 mg. to 300 mg. (for both the dyskinesia(s) AND the tremor), he did not insist on it, but Doreen will speak with him in a week's time when they will discuss, again, the increase to 300 mg. We had been unclear as to his exact reason for prescribing the Amantadine...tremor...dyskinesia(s)...both...and it seems he has prescribed it for BOTH. It certainly has "worked" well for the dyskinesia(s)...absolutely eliminated them...but, at the 200 mg., it doesn't seem to have done too much for the tremor; thus her neurologist's preference for Doreen to take the 300 mg... we'll just see how this goes for this week.

Chris...I, too, am interested in the timing of the Amantadine. At the 200 mg. daily, Doreen's neurologist has prescribed it to be taken with her morning dose of Sinemet...then, with her 4 p.m. dose. I have read that Amantadine CAN cause insomnia so that I have questioned the 4 p.m. dose, although that would be approximately 6 hours before she usually goes to bed.
I would be interested, too, in the dosing at the 300 mg. in the event that we decide to increase to that dosage.

...and so I continue my venture/adventure with the PD "meds". I must say that it certainly has kept my brain very busy...and that's a good thing.

I am so appreciative of all the excellent responses that I have received from the people here. I can't tell you how helpful you have been...and can't thank you enough.

Therese

Therese, Chris,

I don't mind sharing my schedule with you. As I said, I take my Amantadine 3 x per day.
The first dose is at 8:30 am with my first dose of Sinemet.
The second dose is at 2:30 with my third dose of Sinemet
The third dose is at 5:30 with my fourth dose of Sinemet. This used to be 6:30, but this conflicted with commuting and dinner so it's easier to take the medication a little earlier than the other doses.

I have not had any insomnia with this schedule nor any of the wooly-brain feelings. In fact by the time I'm ready for bed, I can barely crawl on to the bed and sleep pretty deeply for about 4-5 hours before the dyskinesias and stiffenss wake me up.

Chris - you do bring up a good point about the colds and flu. My sister is a walking germ factory as well with 3 kids in daycare and school. When she visited a month ago, everyone else in the house ended up with the flu and a bad cold except for me. I guess this is one of the added advantages of taking the Amantadine.

John

for providing your dosing schedule for Amantadine...and, too, for your encouraging words about Amantadine itself...exactly what Doreen and I need at this time.

Just another question, John...what is your Sinemet dosage, i.e., how much at each of the 4 dosings? Doreen has been taking the Sinemet 3 times daily...25/100 mg...1 1/2 @ 7 a.m.....1 1/2 - 2 @ 11 a.m. (depending on how well it "works" at this time)...2 @ approx. 4 p.m. w/ a possible total of 5 1/2 tabs daily. Until very recently, she had only been taking 4 tabs a day divided by 3 doses= 1 1/2 + 1 1/2 +1= 4 tabs...but, now at the 5 - 5 1/2 tabs. I have suggested to her that possibly she should be taking smaller doses more frequently but equaling the same total amount of 5 - 5 1/2 tabs...possibly even using a 4-dose daily regimen as you do. I guess my thinking on this is that she might be insured of a more constant "flow"of the Sinemet w/out the more concentrated dose at fewer intervals. The more recent increase in the Sinemet has NOT resulted in the dyskinesia(s) that she had been experiencing before adding the Amantadine so that we're hoping that the increased amount of the Sinemet will help with the tremor, and in fact, her neurologist told her today that she can even take 6 Sinemet daily to see if that would give an even better benefit toward controlling the tremor...but, he still feels that he would like to increase the Amantadine to see if that "works" well to control the tremor. I guess, though, he will wait to see if the increased Sinemet dosage helps with the tremor..if so, then, there would be no need to increase the Amantadine to 300 mg. daily...if not, then, he may decrease the Sinemet and have Doreen "move to" the 300 mg. Amantadine. He likes to "work" with one "med" at a time so that it's clear as to what "med" is doing (or not doing) what.

Gosh, John...I have rattled on, here...really went quite astray from my original question to you, i.e., what are your Sinemet doses, i.e., total daily dosage and how much at each dosing? Also, does the amount of Sinemet control your tremor well...or, is it possibly the Amantadine that is contributing to control of your tremor? Believe me...if you can make "heads nor tails" out of this, it will be a miracle!!!! I tend to write as I am thinking and I just have so many thoughts. It's a wonder that anyone would take the time to "wade" through some (probably most) of my posts!!!

Thanks, again...
Therese

Hi Therese,

You post is something like some of the Algebra word problems I've been working on lately.

I think it's a combination of both at is working at the moment. I won't rock the boat too much...

Anyway, I'm taking the Sinemet 6-1/2 x per day total. These are the 25/100 Carbo-Levo generic yellow pills. I was initially at 2x then upped to 3x with a Mirapex at night, which did little for me, then upped to 4-1/2 times w/o the Mirapex, which worked for about 1-1/2 years. I was happy as a clam until July when I started feeling worse like the Sinemet wasn't working anymore, and I was getting stiffer, more tremulous, less steady, and even fell a couple of times.

I held out until my September appointment so on Sept. 20th, when I saw my neuro, I was tremulous, had diffculty getting out of the chair, and other problems with my gait, and movements.

I had already increased the Amantadine to 3x during the same time, so apparently the Sinement was working, but not enough along with the Amantadine.

As of now with the 6-1/2 pills, I can again get out of a chair, my arm swing is better, I'm not as stiff in the upper arms, and I don't tremor as much if at all except for the early morning.

I am on a very ridgid schedule, which is a pain to watch because it always gets in the way of doing things and I feel like I have to constantly watch the clock, although I can tell if I'm running late because I begin to stiffen up especially in my arms and legs, which feel like the dystonia is going to start up any second.

My timings are:

8:30 - 1 Sinemet 25/100, 1 Amantadine
11:30- 1 Sinemet
2:30 -1 Sinemet 25/100, 1 Amantadine
5:30 - 1 Sinemet 25/100 1 Amantadine [1]
8:30 - 1 Sinemet 25/100
11:30 -1 + 1/2 Sinemet at bedtime, which is usually a short time later.

Lately I've been going to bed much later, due to homework (taking online classes) so I will take the 1/2 just as I climb into bed. My sleep is pretty deep for at least 4-5 hours before I begin to get stiff and twitch, which usually wakes me up.

John

[1] This used to be 1 Sinemet 25/100 at 5:30, and 1 Amantadine at 6:30, but due to commuting home and dinner time, I found it easier to take both at 5:30 so the medication has a chance to sit in my stomach before I eat.

...and oh, ha ha...but, I agree...what I wrote in that last post could be compared with an Algebra word problem!!! Just testing your cognitive abilities, that's all!!! I must say, though, that you "wound your way 'round my post very tactfully!

Thank you for posting your "med" schedule...have made a note of it....

I have questioned, too, the fact that Doreen's last dosage of "meds" is at approximately 4 p.m....then, no "meds" until the next morning at 7 a.m....15 hours elapse without any "meds". That just seems such a long time for her body to be without any "meds"...that she just kind of "slams" her body with the "meds" in the morning..but, who am I to question this...well, I guess as her caregiver, I'm entitled to have some opinion about this. What would YOU say about this, John? Or anyone, for that matter...what might be anyone else's feelings be about this?

As always, thank you....
Therese

amantadine was a nightmare for me. some in here may remember my horrible misdxd a few years ago of anxiety disorder instead of pd. that fun little trip began with amantadine due to one of the side effects can be anxiety. since i have brain damage from encephalitis/menangitis, i am very prone to side effects of meds, SO.... watch for anxiety.

it is good to read so many positive reactions to it. unfortunately, mine was very negative.

Hi Therese,
The Algebra is a good test for the cognitive abilities... So far I'm barely passing. Being a computer technician by vocation (not love), has helped me navigate messges with lots of details and pick out what's asked most of the time.

Anyway, that schedule doesn't make sense. Why would her doctor want to not cover the night time at least with a Sinemet CR?

I would question the big gap in the medication. Perhaps she needs to have the dosages increased now and spread over more of the day. When I first started with the 2x and then the 3x dosages, I was running out during the night as well, and couldn't wait until the morning to get the first dose of Sinemet in me. When my dosage was increased to 4-1/2 per day, I was able to go a lot longer into the night without any problems. Now at the 6-1/2 per day, I'm getting the same results I had at 4-1/2 times initially.

If I went that long I surely would be in horrible shape by the next morning. Even now I can't sleep more than 6 hours before the twitching and spasms are so bad that I need to get up. So now I'm usually up early to take my first dose at 8:30 anyway even on weekends when I used to sleep until noon.


John