Wearing off it’s hard to do! By Dr. De Leon

  “He stopped loving me in the thick of my loving him.

    He was finished but I was not.

 I felt like I had been stopped in the middle of an orgasm.” ~ Stopped by Carmen  R. Rutlen

When I was practicing I used to have an intellectual grasp of  the motor fluctuations ; yet never fully understood until I got PD as well. Cocaine being so similar in structure to dopamine, it binds at same receptor. Thus, I could imagine and understand how the euphoric initial response one gets with time would diminish therefore needing to escalate dose in order to achieve same response. In my training, I  was past the days where doctors as part of their learning of medicine experimented with compounds they were to use in order to better understand their effects so had to go on theory. Never did I dream that I would one day become a walking pharmacy and where my knowledge of pharmacotherapy would be put to the test repeatedly.

I often talked to my patients about the feeling of being ‘on’..and how long the effect of dopa lasted. However, I used to think perhaps due to my naïveté that patients could only feel the change as they advanced in disease. But, in actuality one of the tall tale signs that you do have a dopaminergic disorder is quick and exaggerated initial response to levodopa.  Several of my patients stated they could not tell any difference with levodopa or when it was in their system. This usually was a clear  sign we were dealing with atypical causes of Parkinsonism.

As I am sure those of you who have Parkinson’s disease can attest to the significant mental rush you achieved when you first started levodopa. I could tell exactly when it kicked in and when it wore off suddenly, the first time I took Sinemet (levodopa/carbidopa). I despised the sudden feeling of unable to focus and feeling spent. Some of you have agreed with me of experiencing same feeling independent of any motor changes. When we first took dopamine,  our minds felt “on,” more focused, alive- like you could conquer the world and felt a bit euphoric not unlike the sensation we all have felt when we were first in love. No wonder and not at all coincidentally, dopamine is the “feel good” chemical released when we are in love! Dopamine is released when we see our loved one looking back at us, or just think about the love of our lives makes our brains light up like a Christmas tree.

But, just as in life and relationships maintaining that constant state of  happiness, giddiness, and feeling high is impossible to do. Now, I truly understand why cocaine is so addictive. We all love the feeling of being in love. When dopamine wears ‘off’ suddenly is like experiencing an emotional and physical heart break over and over..

Some may say it feels like living you hanging in the midst of an orgasm. If we never give ourselves time to heal we will go down a dark path of depression building an emotional scab that bleeds at the slightest touch. When we lose our love, we feel hopeless, anxious,nervous, unable to sleep, or sleep too much, listless, tearful, aloof,  and experience physical and emotional aching. So are the feelings when we experience levodopa withdrawal.

In order to avoid these feelings what should you do?

One thing you don’t do is chase after that person or in this case keep adding more and more dopamine…only lead to more hurt, withdrawals and serious complications. We find support from others which may not provide as good of a feeling but will help to stabilize you and regain strength.

In order to avoid repeated break -ups with your medication and being a slave to it…a combination regimen is advised- you would never let one man/ woman rule your world right?  Neither should you do the same with PD meds.  to take a page from Mambo # 5 song  by Lou Bega, a little bit of  (dopa agonist) and a little bit of  (levodopa) is best way to go to keep you and happy and balanced …

In my  experience in years of dealing with PD from all aspects, a combination of the following drugs dopa agonists, with NMDA receptors medicines like amantadine, Mao – inhibitors, and compt inhibitors along with levo- dopa is the best way to keep PD stable  for the long run. Sprinkle of ssri’s ( Zoloft,lexapro), tricyclics ( eleavil, remeron), or SNri’s ( Effexor) on top is the icing to the cake.

With age comes wisdom, so they say! As our Parkinson’s  advances, it is ever so crucial to learn how to fall in love (using our dopamine) without losing ourselves in the process.

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2 thoughts on “Wearing off it’s hard to do! By Dr. De Leon

  1. Couldn’t have stated it better. Once again, you hit the nail on the head. I feel most days that I am chasing the “on”. It can make you go absolutely mad!

  2. Wow, very insightful. The variables in how one’s system responds to each day would make it a challenge.

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