Walking is much worse after medication

[Spottedtowhee]

I’ve been taking C/L 100/25 for 3 years, diagnosed for 8 1/2.

The past three months, I found have found that my walking is a lot worse 20 minutes after I take my first dose in the morning and it continues all day.

I walk well and can get around easily for three hours after I get out of bed in the morning. But after I take my first 9 AM pill, I develop an extreme shuffling gait and I can barely walk for the rest of the day.

It seems so odd that I will be better before I take my first pill then after. I need to get my main chores done before 9 AM or I can’t get them done.

Yesterday I was late taking my afternoon dose by 45 minutes and couldn’t remember if I had taken the pill or not, so i only took half my usual dose. Next hour and a half I walked much better.

Does anyone have a similar experience?

Thank you in advance!

[park_bear]

Too much C/L does impair my walking. Is it doing you any good? It is purely for symptom relief - if it is not helping your symptoms reduce your dosage or do not take it all.

[Spottedtowhee in reply to park_bear]

Thank you for your reply park-bear. I am going to consider reducing my medication by 25 mg to see if it makes a difference in my gait. Medication definitely improves my other symptoms. If I don’t take it I can’t look after myself and I feel lousy.

[LindaP50 in reply to park_bear]

Hmmm. My hubby was having difficulty walking and the neurologist told him to up the meds to 2.5 tabs 3x daily C/L. He originally said go to 3 tabs 3x daily and we told him we wanted to ease into it. Also takes HB1. Caused issues, dr. didn't return our phone call last week.

Without the return phone call husband wanted to try 3 pills 3x daily. Seems worse. For him to start walking takes about a minute and his feet seem to go on tippee toe. Makes me nervous (plus my heart breaks). Threshholds are really troublesome. He's using 2 canes in the house. We have a walker (the kind you get at a hospital because he can't use a rollator) but he's having difficulty using the walker.

Going to call dr again today. I'll continue to read these replies to Spottedtowhee.

Hubby does not have tremors.

[park_bear in reply to LindaP50]

Indeed getting the dosage right is tricky – too much C/L is as dysfunctional as too little. You are right to make incremental changes.

Can your husband climb things? I can climb better than I can walk.

[LindaP50 in reply to park_bear]

He sort of climbs onto the bed! He's OK with ladders, and yes, I spot him.

[park_bear in reply to LindaP50]

I do not have a link but I recall a story of someone who placed images of stairs on a flat floor to help a person with Parkinson's walk.

[LindaP50 in reply to park_bear]

I'll see if I can find anything on this subject. Its an idea!

[LAJ12345]

What brand is it?

[Spottedtowhee in reply to LAJ12345]

It is APOTEX .

[richardo123]

Yes I go through that. I go for a walk to take advantage of this time of freedom before I take my first dose. The specialist is getting me to try and adjust back downward some of my medication . Only been 2 weeks and not much change to date. Weird !!!!

[Spottedtowhee in reply to richardo123]

Thank you, richardo123 . It is very weird. Do any of your other symptoms get worse after you take your first dose?

I’m going to try to cut back on my medication as well to see if it improves my gait.

[johntPM]

I experience some of your symptoms:

- I get up feeling well and don't feel the need for medication. I put this down to my dopamine reserves filling up overnight.

- when a do finally take a pill I feel worse. I put this down to the exogenous levodopa having the unwanted effect of decreasing the endogenous production.

Where I differ is that after about 30 to 60 minutes the levodopa kicks in and I am better than if I hadn't taken a pill.

I'm not sure whether in the brain levodopa and dopamine count as proxies for one another.

If you really want to get to the bottom of this, you need to take some measurements. You can measure your performance on getting up, on taking your first pill, and 60 minutes after taking it. I find a good way to do this is to do the side to side tap test, where you first using just the index finger of your left hand type q followed by p for as many times as possible in a 30 second period. Then repeat using your right hand. For an app to do this, use:

parkinsonsmeasurement.org/t...

[Grumpy77 in reply to johntPM]

Hello John

What is exogenous and endogenous? Thanks

[johntPM in reply to Grumpy77]

Sorry I should have explained. Endogenous is from inside the body. Exogenous is from outside the body. So, when we take a Sinemet pill it is adding exogenous levodopa to the brain. Levodopa/dopamine made in the body is endogenous.

[Grumpy77 in reply to johntPM]

Thanks, never too late to learn some vocabs

[Spottedtowhee in reply to johntPM]

Thank you for your response, John. Like you, my symptoms, except for my gait, generally improve 30 to 60 minutes after I take the pill. It’s only my walking that worsens.

[park_bear in reply to johntPM]

If you are taking the immediate release version, after an initial spike the levels will drop which may account for what you are experiencing.

I too am at my best upon first arising

[Parked]

Do you think it could also be aligned with your stress levels, especially with the pandemic?

[laglag in reply to Parked]

Yes

[Spottedtowhee in reply to Parked]

Thanks for your question, Parked. I don’t think it’s related to stress. My symptoms for the most part improve after I take the medication and it is the walking that gets worse.

[lenamm]

Yep I had exactly that. First 2-3 hours before meds I could walk, stand, do chores, etc. After meds no more anything for the rest of the day. My issue was dystonic and dyskinesia both medication induced. I only took 450mg of Sinemet ER a day (three 150mg doses). Only thing that solved with was getting a focused ultrasound brain surgery last April.

[Grumpy77 in reply to lenamm]

Hello lenamm, congrats you had FUS PTT 2 months ago... Approximately what percentage of your tremors disappeared after FUS? Thank you

[lenamm in reply to Grumpy77]

I had it 15 months ago. On my surgery side 95% of tremor is gone. Also 80% rigidly and bradykinesis and 100% dystonia and dyskinesia

[Grumpy77 in reply to lenamm]

Wow that's wonderful, do you still have to take PD meds?

[lenamm in reply to Grumpy77]

Yes but only for the side I haven’t had surgery on yet

[Lana666 in reply to lenamm]

Lena, it looks my condition is getting closer to what you just described. After a descent sleep I am fine for 1-2 hrs, like no Parkinsons at all. When starting take 1/2 of a sinemet (1 pill in the morning put me in dystonia right a way) and become so rigid, cannot properly move. Then starting resolve dystonic rigidity with a hot bath/cbd or eating something. May take couple of hours to get functional. Kind of put on hold my submission to SOnimodul cause some weeks I’m doing fine and changing my mind. Your story gives me a hope.

[park_bear in reply to Lana666]

The rigidity is a sign of overdosage. If you are taking the immediate release version you might want to consider one of the time-released versions which provides a more even release of levodopa with a lower peak.

[Isthistheone]

Hey Spot, Jim here. Your carb levo medication is 25 mg carbadopa and 100 mg levodopa, hence its written 25/100. How many times per day do you dose and how much are you taking each time? Are you taking an MAOB inhibitor such as Selegiline? Its great that you feel you don't need to dose until 9am, 3 hours after you get up. Your dose at 9am, is that on an empty stomach? I am 10 years after diagnosis. I take an extended release and regular release both 25/100, starting at 5am and every 3 hours thereafter. I'm usually in bed by 830 or 9 each night. I'm up 3-4 times each night to pee. If I need to dose during the night I'll take a hit. I used to get through the night without any meds, but not anymore. If i don't dose i don't move! If i wait the full 3 hours before I dose again I freeze up and can't do a thing!! Can't tie my shoes, can't walk, can't even pull up my pants.

If I dose 30-45 min before my scheduled time I make a nice easy transition and stay on. This also requires discipline on my eating habits. I have to give my meds a 30 min head start on an empty stomach. It seems that most of my off time is my fault - eating to soon, being late dosing not paying attention to the clock.

You said you felt worse 20 min after dosing. When all this started, I would feel relief within 10 minutes of dosing. Not anymore 30-45 minis typically the time it takes for me to start feeling relief. A suggestion don't wait till 9am to take your first dose, maybe 830 or 815 would be better.

Is your shuffling feet festination? My festinating gait is severe and uncontrollable.i use my walker 100 % of the time.

Good luck and keep moving!!

[theAfrican]

Did you come up with any conclusion.? Are you short of breath? Is it shortage of oxygen in your brain? I. Have the same problem. I can’t believe that taking c/l make it worse.

[Spottedtowhee in reply to theAfrican]

No, I’m not short of breath. It is very strange that my walk

gets worse after I take my medication instead of better. I’ll be speaking to the neurologist in two weeks, and see what he has to say.

[Airlog414]

I feel the same way. Before my first dose..... I can walk my dog for half a mile after waking up. Then I work out for an hour. I have to skip my first dose at 8 am cause I find it impossible to work out medicated. I am too diskinetic. So I take my first dose at 11a which really supposed to be my 2nd dose. Sometimes I’m tempted to stop the meds altogether. While the meds can really remove my symptons 100% almost, the off time plus the Diskinesia are so severe that I often debated if I should just stop the carbedopa levadopa.

[LindaP50]

Do you have tremors? My hubby doesn't have tremors but his walking gait changed. Has festination (which I just read can be a fait often on tiptoe).

[Spottedtowhee in reply to LindaP50]

No, I don’t have tremors.

[LindaP50]

Ok - so you are similar to my hubby. I'll be looking for the results with your visit to neurologist.