bi(di)phasic dyskinesia

[buzbyc]

Hi all,

Have done the obligatory search for previous discussions about biphasic dyskinesia and not found much, the most recent being a brief discussion about 4yrs ago.

Not been officially diagnosed with this type of dyskinesia but pretty convinced that they explain my symptoms (described as silly walks in some academic papers)

Anyway, do any of you have experience of this and any positive treatment strategies?

thanks in advance for your thoughts

Nick

[pdpatient]

Hi Buz, I have it and suffering hugely because of it. My coping mechanism is to pop in a 10mg Propranolol pill to counteract the tremors. Gabapentin also helps. I use100mg. Downside is the low blood pressure that results. which can be substantial sometimes.

I have discussed my concerns with my MDS doctor and his solution? DBS😂😢😔

[buzbyc in reply to pdpatient]

Thanks for your reply pdpatient

Sadly it’s reassuring knowing that someone else is struggling with this.

My walking and even standing have been pretty bad recently, to the degree that I anxious about whether I’ll be able to stand up/walk which then obviously makes the whole situation worse. Having said that when I’m on I could easily walk a few messes with my head!

Propanolol sounds an idea, might stop the vicious circle situation. Saw someone mention gabapentin as a solution online today. I’m sure both of those and DBS will be discussed when I have my first appointment with a movement disorder specialist in October (have been looked after by a general neurologist since diagnosis in 2014).

thanks again for replying and happy to carry on sharing ideas if it may help

Thanks

Nick

[pdpatient in reply to buzbyc]

No problem and happy to share. I am thinking that since propranolol and Gabapentin both are used off-label for managing anxiety, maybe that's how they manage to bring me back to a sane state.

The two medications are also used off-label for tremors. Both have a propensity to bring down blood pressure. Propranolol is indeed a blood pressure medication and Gabapentin is used to treat epileptic seizures.

Anxiety can be quite debilitating and dangerous because it further perpetuates the risk of a fall. As anxiety builds up, the risk of falls becomes dramatically worse.

[Oceangir in reply to pdpatient]

What exactly are your symptoms that align with biphasic dyskinesia? It does not seem to be a very well understood phenomenon.

[Oceangir]

Could you share more about how this manifests for you? What does it look/feel like? I understand it has to do with gait disturbance both on and off at certain intervals.

[buzbyc in reply to Oceangir]

I found this to be a really helpful article which I felt describes the walking gait I have at the dyskinesia times.

ncbi.nlm.nih.gov/pmc/articl...

[rebtar]

I have biphasic— dyskinesia both when dopamine is high, and at end of dose. No gate issues yet, just some swaying and twisty movements.

[buzbyc in reply to rebtar]

I don’t think that quite fits the definition of biphasic that I’ve read about. Biphasic is described more as when the medications are in the process of kicking in and when they’re wearing off. So my dyskinesia is not there when off or when fully on.

We’re all different aren’t we with slightly different symptoms, which doesn’t made it easy to work out what’s going on 😬

[billybobAK]

I have biphasic dyskinesia. It comes on briefly in the morning about 1/2 hour after my first dose, then again in the late afternoon or early evening 1/2 to 3 hours after my last dose. It can vary in intensity and length of time. In the AM. Usually 15 to 25 mins. Mild to moderate intensity (but I am jerking so much that I won’t drive) The evening is worse, petit mal to sometimes grand mal like in intensity without the seizure. Then after the uncontrolled movements dissipates my voice is slurred and nasal passages are swollen so that it can adversly effect my ability to breath throgh my nose. Still looking for a solution. Have tried adamintine for about 6 months and gocovery for 6 months neither worked also tried using only macuna for a couple of years. I take a drug holiday 2 or 3 times a month. Everything works well (voice, balance, much more social.) can’t walk so good and get a little shakey near day end but in general feel much better more like a normal individual. Can’t do this a second day as PD symptoms come back.

[buzbyc in reply to billybobAK]

Thanks for your response billy bob. Your description seems to fit with what I’ve read about this type of dyskinesia when the wearing off experience tends to be a lot worse than the kicking in one. Interested to know how frequently you taken your normal doses during the day?

[billybobAK in reply to buzbyc]

Every hour the second and third dose every hour and a half for DeSalvo after that.

[Juliegrace in reply to billybobAK]

I just lost a long reply when I accidentally hit the back button. ##@$&%*

[LAJ12345]

hi, they said my husband had that when he had side effects after his dose of madopar was increased and changed to the slow release. He became so sick on that he went back on the lower dose instant release and all the new symptoms went away again.

What it appeared to me was that the first peak when the levodopa was at peak blood level was an overdose symptom. This caused rigidity, spasms and after a couple of weeks was causing his throat to constrict so he could barely breathe. The second “peak” was actually a wearing off symptom at the end of the dose which also made him freeze up which seemed similar. We charted his doses and symptoms every hour for a few days and could see what was happening. By the end of the day the overlaying doses were causing worse and worse peaks.

He went back on the instant low dose and spaced them closer together in the morning then his last dose of the day is a half dose and this effect has gone away.

[buzbyc]

It sounds like you’ve had such a difficult time trying to work out what’s too much, what’s not enough. Sounds like you’re in a bit more of a stable position now - glad to hear that.

[hercules957]

I have it self-diagnosed. I does not last long so I live with it, 10 min max and not at every end (off) or peak bio-plasma concentration. It is a weird thing, I can understand getting dyskinesia at peak plasma concentration but getting it at the lowest concentration as well is not understood.

[GVee]

What are the symptoms of a biphasic dyskinesia?

It is very difficult for me to explain what I am experiencing now but I will try and hope that I am making sense.

I started having dyskinesia about 6 months ago and over the same time developed a strange gait which comes on everyday suddenly and goes away suddenly too. It generally kicks in around mid morning and keeps going on and off till late afternoon. My knees stiffen and I can feel the muscles in my legs tightening and my gait changes into the Tinman's gait from the Wizard of Oz. Walking is painful and I have to sit down and rest and wait for the tightness to go before I can walk again. This has seriously impacted my walking .

I was diagnosed in 2020. I take Mucuna primarily, 1 Sinemet a day, and Amantadine once a day. I have tried increasing and decreasing my meds hoping for relief but nothing really seems to be helping.

Would this be biphasic dyskinesia?

Have any of you experienced this ?

[lenamm]

I had it super bad - I convulsed for 2 hours every time my meds kicked in or off and my muscled twisted with painful dystonia. I couldn't work, drive, walk, etc. I had a surgery called pallidothalamic tractotomy by focused ultrasound on both sides of my brain (one at a time)in Switzerland in 4/2019 and 12/2020 and it is gone now. Nothing else worked for me. They are now trialing it in the US. I am back to having a life and working again. I am 50 and have had PD almost nine years