What is Considered a High Dose of C/L?

[dboobar]

I am currently taking two (2) 25-100 tabs of C/L every two hours, all day and all night. I set the alarm every two hours to not miss a dose. Because food (especially protein) reduces the effectiveness of the medication to a very large extent, I often times need to take even more C/L to counter my lack of movement and mood symptoms. So, in total, I typically consume thirty (30) 25-100 C/L tabs per day.

Can I get feedback from you all? Who is taking this amount (or more) of C/L on a daily basis?

I have been diagnosed with PD for almost 20 years. I believe I have tried every medication known.

I am currently connected with DBS and the doctors (neurologist & psychiatrist) are asking me to reduce the amount of C/L take by a minimum of 25% or 8 tabs daily.

This reduction is proving to be very challenging for me. From this reduction in meds, I am having severe spasms where swallowing is affected. Over-all body movement is impaired at best and in most cases completely absent. The most discouraging issue is that this titration is severely affecting my mood. I have serious bouts of anger and physical violence; I am forced into states of high anxiety and crazy fidgeting; deep depression is fixed at my core.

What should I do? My current doctors don't seem to have experience at treating someone that deviates from the issues found with the typical PD patient. This is the case with MDs from all over the USA, at very reputable hospitals.

[park_bear]

Yes this is certainly a high dose. You should get your vitamin B6 and B2 levels checked. At your level of levodopa consumption B6 depletion is a possibility. This can result in a vicious cycle of reduced levodopa effectiveness requiring more levodopa and leading to further B6 depletion. See here for additional detail: healthunlocked.com/cure-par...

Meanwhile, regarding the levodopa, if you need it, you need it. These doctors are making an unreasonable demand. I suggest getting in touch with them, very firmly explaining that this is not working, and that they're going to have to come up with something different.

[johntPM]

dboobar,

I am nearly 20 years post-DX, and I'm on about 800 mg levodopa equivalent daily dose. LEDD tries to take into account the contribution made by the different drugs making up your regimen. Are you on any other dopaminergic drugs?

John