Levodopa Dose Adjustment

As many of you know after years being on HDT I am currently adjusting my dose (levodopa and thiamine hcl).

I stopped B1 and restarted several days later at different dose. I adjusted the time I take levodopa. One thing I’m trying to do is improve tremor control. Tremors affect my sleep and thus my concentration.

Last night I did not take my night doses of levodopa. Tremors were out of control. At two o’clock in the morning I turned to THC, dose of 25mg capsule. By three o’clock I could not move from the waist down. Wife had to pull me out of bed for me to go pee. She handed me the walker and I slowly made the round trip. She placed me back in bed where I went back to sleep. I awoke at 8 a.m. fully recovered from the frightening experience. The marijuana did allow me to sleep but in the future I’ll stick with levodopa for tremors.

[jimcaster]

That had to be scary, but thanks for sharing your experience with us. Best wishes always, Roy!

[reedboat2]

THC doesn’t work for me. Even small amounts are too stimulating to the CNS.

[MissRita in reply to reedboat2]

Omg me too!! Why is that?? Any CBD or THC either on their own or in combination make my tremors much worse.

[chartist in reply to MissRita]

If the THC is from Sativa varieties, it tends to stimulate you. If the THC is from Indica varieties it tends to let you relax and go to sleep. I only use indica varieties for sleep. I choose high THC levels so I only need to use a very, very small amount . For me, less is more for the purpose of sleep.

Art

[MissRita in reply to chartist]

Oh wow thank you so much for that. I will look more into that.

[1LittleWillow in reply to chartist]

That is true. I only use indica for sleep. My nephew told me it's easy to remember because indica sounds like "in da couch" lol.

[MissRita in reply to 1LittleWillow]

Lmaoooo

[Erniediaz1018]

Frightening experience, thanks for sharing.

[M-o-ggy]

Thank you for sharing this. I have been thinking about you.

[faridaro]

That must have been a difficult experience Roy. Hope your levodopa and thiamine adjustments get ironed out and you won't have to go through this again. Thanks for sharing and keep us posted!

[Isthistheone]

Sorry to hear that Roy. How much L-dopa and how much HDT were you taking? I tried thiamine three years ago. It didn't help. Are you tremor dominate or gait/balance? As you know Focused Ultrasound is getting a lot of good press for tremor dominate folks.

I hope you get the right dosage quick.

Take care.

[Hidden in reply to Isthistheone]

Tremor dominate

[Isthistheone]

BTW don't know the cause, but when i run out of L-dopa it's within seconds. I freeze up suddenly. Only getting 2 hours between doses. Natural progression of PD ? I'm in my 11th year.

[Hidden in reply to Isthistheone]

Similar experience

[Hikoi]

Dramatic on / offs. The best way to deal with them is to take your levadopa before you go off. But easier said than done.

[Isthistheone in reply to Hikoi]

Sorry I didn't word that properly. I do know the cause of my freeze ups. I find if I wait until my dosing time, I'll freeze up every time. So sometimes I dose up to an hour early. As I noted earlier I go from super sonic to dead still in the blink of an eye!!

[Painty23Painty]

Sorry to hear that Roy, best wishes

[WinnieThePoo]

Last time I had any THC was smoking a joint at a friend's wedding in Holland 30 years ago. I have found CBD oils helpful recently.

Hopefully you'll get the ldopa B1 balance right again soon

[Dap1948]

Perhaps reducing thiamine and ldopa at the same time was too much and made it difficult to work out what was affecting what? I have felt the need to reduce thiamine over time but have left ldopa exactly as it’s been for years. I’m tremor dominant and need ldopa to control that.

[Hidden in reply to Dap1948]

Did not reduce levodopa

[Dap1948 in reply to Hidden]

Ah I thought you said you did not take your night doses of Levadopa ...

[Hidden in reply to Dap1948]

In general adjusting time of dose not skipping.

[1LittleWillow]

Roy, that's a really large dose of THC. I originally only needed about 7 mg to get 8 hours of restful sleep, along with melatonin and some magnesium at bedtime. I've increased to about 10 mg over the past 6 months, but any more than that would make me feel terrible. If you haven't used THC before, you may only need 5 or 7 mg for sleep. Edibles usually take an hour or two to kick in, so I always take it at least an hour before I plan to go to bed.

[Kevin51]

Hi Roy

all down to the THC? When I took some (too much) my tremor disappeared which was great but I had severe vertigo and did not dare move! I don't know how typical I am, but my tremor is always better when I am relaxed and always stops when I am relaxed enough to go to sleep. I do wake repeatedly when the tremor will briefly return until I relax again and drift off.

[Despe]

Roy,

I remember you said that you were going to go to your doctor for your swollen ankles. What did he diagnose? Thank you.

[Hidden in reply to Despe]

Caused by Pramipexole

[Hikoi in reply to Hidden]

Roy are you still on pramipexole and if not when did you stop?

[Hidden in reply to Hikoi]

Stopped early this year

[Despe in reply to Hidden]

Thanks, Roy. Husband's ankles are swollen, too. Comes and goes though. It's not heart related according to his Vanderbilt cardiologist. Believes it's meds' side effect although he is on only 2 t Sinemet a day. Body knows chemicals are unwelcome. . .

[Hidden in reply to Despe]

Couldn't you change to mucuna-only?

[Hikoi]

I asked Roy because pramapexole can help in calming tremors.

[Godiv]

Oh no. So sorry to hear that. I hope you’re feeling better now.❤️