I'm 5 years from PD diagnoss, now 61 years male. My current daily drug dosage is 4x100mg levodopa, 2x10mg selegiline mao inhibitor, 0.56mg dopamine agonist.
2 main problems:
- *on* state only 2.5-3 hours after levodopa take, tremors between takes, daily *off* time then quite long, slowness and tremors during off time
- heavy tremors during night, I normally slept immediately but have typically only 1 hour continuous sleep, typical total sleeping night time only 3-4 hours, very weak quality
Still positive overall feelings although tremors makes me feel sometimes quite crazy. I'm trying to do some exercise almost every day, walking, gym, spinning.
Currently no side effects from any drugs.
Your suggestion for next steps to make my life easier??
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Parkkis
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After my PD diagnosis, I looked for studies that actually showed success by means of a before-after comparison (DAT scan) - there were only two studies that convinced me: Tanganil and sports (high load interval training 1h with heart rate 20min at 85% of maximum) - and I also find B1 therapy convincing as there are many youtube videos on this.
Hi. One thing that strikes me is the 2x10mg of selegiline that you take daily. Could it be affecting your sleep? It might be worth discussing with your doctor in case your meds/timings need a tweak. Don't change anything without medical advice though.
Currently I take 450mg C/L + 50mg Opicapone + 1mg Rasagiline.
And lots of exercise: running, swimming, dancing, walking, cycling, yoga.
To sleep I take 100mg C/L extended release at 8pm which makes me drowsy around 10pm. Then at night I wake up to go to the bathroom and take 50mg of C/L which helps me fall back asleep until morning. To sleep I sometimes take Zolpidem (a few drops) or melatonin (3 mg).
May I ask what dopamine agonist you take at 0.56mg? I have been prescribed 2mg slow release Ropinerole and the side effects of dizziness and unsteadiness on feet have prevented me from enjoying the things I do. I’ve managed to wean myself off it (which was fun) and side effects gone but the agnostic helped with my symptoms 😔
"the side effects of dizziness and unsteadiness" - This is an indication of orthostatic hypotension being caused by the dopamine agonist. This can be disabling. It would likely have been attributed to the Parkinson's by your physician. Very wise of you to have discontinued.
your levodopa might be too low. I take 200 mg levodopa every 2 1/2 hours during the day, works fine. The other stuff is just to make the levodopa work longer, but it’s easier to just take levodopa alone. Agonists and selegiline may not be necessary
selegiline converts to methamphetamine in your body. It’s an older drug that has mostly been replaced by rasagiline. Your insomnia is almost certainly caused by selegiline .
Yes but my neurologist is not willing to do that if we can somehow manage with medicine. Levodopa wearing off issues started one year back. We first increased levodopa from 300 to 400, then added selegnine and 2 weeks back dopamine agonist. So far not clear positive results..
If switching from selegiline doesn't fix your sleep issues, a lot of PwP have found Melatonin can help with PD-related sleep issues, especially in the early years following diagnosis.
many neurologists are reluctant to increase levodopa , but it’s the only drug that actually works. The other drugs are just “helpers”. The worst that can happen if you get too much levodopa is a little dyskinesia (involuntary movement) for a few hours. Just raise your levodopa and drop the other stuff, it’s mostly useless crap ( but you should taper off the selegiline and agonist gradually).
also consider that 4 doses a day may be inadequate. You might need 5 or 6. Levodopa also can help with sleep, if you cant sleep you can take a dose at night. You can’t really “overdose” on levodopa, dyskinesia is the worst side effect.
For many (including myself), it took several years to achieve a state of "medicated goodness", due to the need to up-ramp meds slowly, and rebalance. Of course, in the background, the disease itself is a moving target, which is unhelpful.
If I were in your position, I would be looking to experiment with changes quite slowly -- timing, amount of C/L, other therapies, with a month in between each change. But I'm fairly comfortable expressing things like this to my neurologist, and he is comfortable pushing back where he thinks I'm out to lunch.
It seem like you could be a strong candidate for extend release versions of C/L or a pump or DBS. Taking regular C/L 4x per day with long periods of "off" time and tremors throughout the night is not acceptable treatment for you. Decent sleep is important in slowing progression as well. Your doctor has other options. Press them or find another one.
I have personally not found benefit in any of the other "helper" drugs such as moa inhibitors and agonist. As others have stated, if you choose to reduce the agonist, do it very carefully and slowly. It can be excruciated to go off of as well as cause insomnia.
You might consider spreading your C/L dosage more throughout the day. You can optimize effectiveness by starting with 100 mg and then taking 6 doses of 50 mg each.
It might also be time to increase your C/L medication, as you are still on a relatively low dose. However, before doing that, I would recommend checking for any underlying issues that could restrict levodopa absorption, such as a vitamin B6 deficiency resulting from your PD and sometimes caused by the medication. Park_bear has often reported on this interaction.
I do not take C/L. I get my levodopa from mucuna pruriens. I used to try to take 4-5 hours apart but would have off time inbetween. I changed to taking every 3 - 3 1/2 hours to avoid off time. I take at 9, 12, 3, and 6. I don’t seem to need at night. I do use the B1 therapy along with other supplements. Tart cherry extract and magnesium along with zinc and P5P also helps with sleep.
Barrie, did you ever take c/l? Or actually start your regimen with mucuna? Did your neurologist help guide you with this or on your own? And did you initiate b1 therapy at the same time?
I am trying to figure out next steps, in what order. See Neuro again in April and she hadn't mentioned any of the options to me previously. So I don't know if she'll be on board to helping. I'm just learning about them now.
As symptoms worsen I need a plan...And it can't be more c/l.
Start with B1 therapy and get Daphne Bryan’s book for guidance. Once you get your sweet spot established on that, start Mucuna. Use one with a standardized % of levodopa, and start low and slow. Use the FB group Mucuna Pruriens Parkinson for guidance. The b vitamins and magnesium really helped my energy level and stiffness. Mucuna works for my tremor and shoulder pain. My neuro lets me do what I want and I research everything. You won’t find a neurologist to help you with this process. It is out of their scope of training . They diagnose a pathology and prescribe pharmaceuticals. The only naturopath doctor that I know of who works with Parkinson’s is Dr. Laurie Mischley. You can find her on YouTube. Keep reading, researching, and trying things.
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