New symptoms?

[forest1]

Over the last two weeks, on wakIng in the morning, I am starting to shake all over, then feel as though I am stuck to the bed. I then have to really think hard to get up. Once up, and getting up my movement is normal for me and then I take my medication. Any thoughts? Anyone get anything similar? I don’t normally have a tremor and am conscious throughout the short period (less than a minute).

[parkie13]

I have been taking my last dose at 10 p.m., then I wake up around 4 a.m. to take my first dose of the day and usually after having a cup of coffee and staying up for a couple hours I go back to sleep for a couple more hours.. My symptoms started being so pronounced I had to start taking sinemet Around the Clock. I do take thiamine HCL

[faridaro in reply to parkie13]

How long after PD diagnosis did your symptoms start to be pronounced?

[parkie13 in reply to faridaro]

I was diagnosed in 2013. I had many symptoms before that. I think I started getting worse in 2019 towards the end of the year. However, still nothing like before I started taking thiamineHCL. They say that the honeymoon period is the first 5 years of your Parkinson's disease. Before I was taking four extended release Carbidopa levodopa 25/100. Now I'm taking five, five and a half, or six pills a day. My 9 a.m. and 1 p.m. are a pill and a half most of the time.

[faridaro in reply to parkie13]

So it seems like thiamine contributed to worsening of your symptoms! How much thiamine were you taking and have you tried to take a break or to reduce the dose to see if symptoms would improve?

[parkie13 in reply to faridaro]

No, no. Before I started taking thiamine I couldn't even turn in bed I couldn't sit up in bed and my balance was atrocious. The t h i a m i n e did an amazing job. That is the only thing that helped me with my movement,.

[faridaro in reply to parkie13]

Glad to hear that!

[pmmargo]

I have the same exact thing when I wake up. I'm not sure it has much significance. Overall I have been doing well on my Pramipexole (225 mg)+ Resagiline(1 mg) cocktail. Maybe you need just a bit more dopamine or agonist?

[mgregor6]

Getting up out of bed has been like struggling to crawl out of a grave.

[forest1 in reply to mgregor6]

I’m sorry to hear that. This disease is devastating at times.