Have you ever seen a water spout? A sudden breeze of wind elevates the water and makes it spin faster and faster in a matter of seconds until it gains enough momentum to glide on the surface and travel right out of its boundaries. I have stood at the edge of shore watching in awe how a once calm ocean suddenly spewed out a spinning water spout the size of a skyscraper. As it passed by my side scaring the heebie-jeebies out of me, it crossed the street, as if it owned it all along.
This is what having biphasic dose dyskenesias can be like. This is not a frequently occurring type of involuntary movements caused by levodopa intake, when it occurs it can be extremely unsettling to say the least. this is by far in my experience the most difficult to treat with medication. This is because patients experience dyskenisias of brief duration shortly after taking medication (within half hour to an hour) followed by severe spasms and dystonia particularly in lower extremities 1-2 hours later. This phenomena can occur through out the day as were mine in the evening. but, they are more commonly present in the am with first dose. Although once in a while we get lucky as was my case. For me decreasing the dose of medication in the evening did the trick. However, the best solution and treatment for people having this problem is deep brain stimulation.
Since all dyskenisias are not equal, you as patient and care giver can best advocate for yourself or loved one by keeping a close diary of events so that your physician /MDS can best adjust or decide plan of action to best suit your needs.
Recommendations: keep a diary of events:
- total episodes you have in a typical day/ week/month
- how many hours/ minutes before the dyskenesias take place after medicine intake
- how many hours/ minutes do these episodes last?
- after the episode how long before you started to feel well again/ have symptom control?
- how long did you have symptom control with medicines?
- did the symptom control last from dose to dose?
- did you experience dyskenesias then spasms? How often and when?
- also think about how many hours in the day you are well vs unwell?
Don’t forget to list any and all medications you take to cope with these symptoms when they occur. (any over the counter meds? home remedies? pain pills?)
How is your life impacted by these episodes
How often a week/month do you miss work/paid occupation or domestic responsibilities because you are experiencing dyskenesias?
How often do you miss social events weekly/monthly with family and friends because you don’t feel well due to the dyskenesias?
Are you unable to do or carry out your hobbies or passion? how often does this happen?
The day i could no longer go shopping for fun or even go to the movie theater which I love to do was the moment I realized something needed to change!
You are now equipped to be your own advocate- know your symptoms and your choices!
Fortunately, we now have more tools in our armament to make life better including a long list of medications one of which is the recently approved Gocovri (amantadine ER) for dyskenisias – however, because there are different types this may not be the answer for everyone. As an alternative, we now have 3 types of DBS surgeries or palladotomies, for those who live in countries where DBS is yet not available, which you can discuss for your physicians.
All rights reserved by Maria De Leon MD