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.
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.
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!
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.
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.
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!!
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.
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.
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.
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. . .
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