Sasha,

I don't know that I can add much other than tangential experience and what I think it means. Frankly, what we "think" and experience is all we have to go on especially when we present to our doctors with an atypical reaction or symptom that they cannot explain. Always, always they fit you under the umbrella of what they know when it is really be telling us all something else entirely. I have had similar experiences as you and Bob; not the full body spasm and the acute stress reaction. There is a huge psychological component to this disease beyond the ubiquitous depression we all supposedly have. Has anyone here ever posted at length on this? No, most of us have acute anxiety and that is researched less. I also am beginning to think that some of our symptoms, some of the time are psychogenic or brought on by stress and anxiety in just having this condition. I'll just list out thoughts:

- It seems most of us are on a combo of an agonist and levodopa. I have also been on Sinemet monotherapy. I think the combo gives us an addiction syndrome. Look at how agonist causes compulsive behaviors? Why do I think this? For a year I was on Sinemet alone and had no harsh wear-offs and no need to medicate over night. Think of it...if your brain is perturbed enough to wake you all night long every 2-3 hours for a med dose...is that not addictive? I had the same experience until I reduced my agonist from 12 mg to 8 mg (Requip XL)

-My cousin, who is a medical professional, tactfully broached the addiction topic with me after seeing my stress reactions and immediate response in taking more meds to get turned back "on". She has pointed out several times that as a med becomes toxic (as in you are taking too much) paradoxically you will get symptoms very much like the ones you are treating and then some. Since being off work, I have lowered my Sinemet intake 2-3 pills a day and feel much better and less stress over-reaction.


-Stress reaction was off the charts for me too. Sasha, what you share about your reaction to even the slightest bad news rings so true for me. My mom would come over to help out with my toddler son and she would end up criticizing me for not having 10 loads of laundry complete in 2 days or whatever and I would freeze. I had a supervisor shock me at work with a trumped up accusation...I froze and was literally trapped inside the library for nearly an hour because I could not sense any muscle tone in my legs- completely shut down. This over reaction I think is because our meds place our amygdala into a state of hyperactivity.

-How could our symptoms be psychogenic? I think that freezing can be partly psychological? I learned to control my freezing through cognitive behavioral therapy and have like an 80% reduction. If it were entirely physiological, it would respond to meds alone and no form of cognitive therapy would work.

-Addictive? One more thing on addiction...I think these rather violent reactions we have between meds are another sign of being addicted. We have an autonomic reaction (sweating, flushing, shallow breathing) because our brain is reacting to not having what it is used to. My parasympathetic system is triggered too usually. You and Bob describe a restless, out of control sort of feeling...I get that too sometimes in a milder form. Then you meds kick in and it's like "ahhhh relief" Doctors call that akithesia; I see it as addiction withdrawal response.

Our instinct is to increase our meds when in turn I imagine we would benefit from riding it out and waiting for meds to kick in. I am trying to do that and having less of all of the above but if I am off for longer than 45 minutes will dose again.

Anyway...just my thoughts and experiences. Not sure that it helps but even if it assures even one of us that we are not alone in this or plain crazy then it is worth it.

Why is it doctors think DBS will take all this away? They know it is the roller coaster med fluctuation doing this. Think about it...main goals of DBS is to smooth out our meds make them more fluid and decrease how much we take.

Laura