Akathisia or dyskinesia?

[Jmellano]

I was dignoased at age 69 in 2015. First symptom was illegible handwriting. I think I have tried the majority of Rx as well as mannitol, B1 therapy, infrared lite,Ps128 probiotic, all to no avail. i take rytary now since october 2021 which I think helped what I thought was akathisia( I felt I needed to move my body) which happened about 30 minutes before next c/l dosE (i was taking c/l 5x/ day. The rytary seemed to correct this symptom. Recently, I felt what i thought was akathisia happening more frequently than before ao my rytary was increased going from 3 doses to 4 per day. Now I feel like I have akathisisa most of the day. I see MDS on 1/9 and will discuss with him. could it be Dyskinesia I am experiencing or is it akathisia?

[DEAT]

I empathise with you. I have been experiencing akathisia for the past 4/5 nights. It starts after i wake up to go to the toilet in the night. It is the worst feeling and i hope you get some answers from your MDS appt.

I only feel this in the night. Never during the day.

I was taking Meloxicam/Mobic to allow me to get the Christmas day preparations done for the past week.

Could this cause it or could it be wearing off ?

I take 150 mg madopar tds. 7am 12 noon 5pm.

No change in meds since commencing in 2016.

Please keep us posted on your outcome. I hope you get relief as akathisia is the pits !!

[LAJ12345 in reply to DEAT]

see my comment below

[LAJ12345]

hubby got the need to move agitation when his levodopa was increased and changed to the slow release madopar. It became worse in the evening. Decreasing the dose and going back on the instant release has reversed that and he is back to his previous state.

My theory is each dose of the day builds upon the tails of the previous doses so by the end of the day you have a much high blood plasma level. Then in the evening the natural dopamine production is at its peak if any is still being made so that pushes it up higher.

See my picture that illustrates this. The slow release takes quite a while to reach an equilibrium in the blood so seems at the right dose for a while but over time reaches higher and higher levels so the effect gets worse.

Sketch of overlapping doses of madopar

[johntPM in reply to LAJ12345]

Please note I am not a doctor and I have no medical training, but I think that Jmellano is undermedicated rather than overmedicated and the symptoms show akathisia, rather than dyskinesia.

Thank you LAJ12345, I like your analysis. But, I don't think that it explains my experience.

I sometimes get what I presume is restless legs sydrome after going 24 hour without any medications at all. I get an almost irressistible urge to move my legs. This goes away after I take levodopa or ropinirole (a dopamine agonist).

In day to day use, and inspite of its dangers of leading to impulsive behaviour, I fiind ropinirole useful to avoid night time problems. This I believe is due to the longer half life of ropinirole (about 360 minutes) as compared to C/L (about 90 minutes).

The key difference to the situation that we are trying to describe may be the endogenous (local, natural, as opposed to exogenous from drugs) production of dopamine.

John

[Jmellano in reply to johntPM]

John, thank y for ur response… not wHat I wanted to heAr. I am so weary of drugs. I was on ropinerole years ago and I got deathly sick bedridden for 36 hours within 1 hour of taking .

[LAJ12345 in reply to Jmellano]

yes that is pretty much what happened to my husband on the long life madopar. When he came off it and reduced the dose he improved. It seems obvious to me it was a drug reaction.

[LAJ12345 in reply to johntPM]

I think it might be both. The dose required to improve movement also produces the side effects with it. He prefers to be slightly less mobile but not to be completely beside himself with agitation.

he has had his genes analysed and has blockages in his dopamine and seratonin cycles. Also very fast dopamine beta hydroxylase enzyme processing which I believe is his problem.

“The DBH gene provides instructions for producing the enzyme dopamine beta (β)-hydroxylase. This enzyme converts dopamine to norepinephrine, both of which are chemical messengers (neurotransmitters) that transmit signals between nerve cells”

I think he very quickly chews through the dopamine converting it to norepinephrine that gives him that highly anxious state. Then runs out quickly. So a higher dose would make that even worse at the peak, but might stop the extreme low. For some reason the slow release madopar made this much worse. I think it’s because the dose is higher . He must still release it more quickly than he should.

The best solution for him is probably to take less more often but that is too difficult with timing around meals.

[Jmellano in reply to LAJ12345]

it is such a delicate balance and usually comes down to choose your poison

[Civic407]

I have had severe akesthesia for the last year, I think it got triggered when I had covid, but this has persisted. It's a horrible feeling and has a severe effect on my quality of life. Changing to rytary may have helped slightly, but on bad days, I take a cannabis sativa gummy and about an hour later, I get some relief and still able to function and be productive. My tremors are usually improved as well. It's not for everyone, but so far, it's the only medication I have found that I notice a significant improvement on.

[Jmellano in reply to Civic407]

uhave noticed improvement with the cannabis or rytary?

[Civic407]

Very mild improvement with rytary, significant improvement with cannabis

[Jmellano]

thanks!

[park_bear]

Why not go back to three times a day dosage of rytary? Are you getting some kind important benefit from the additional dose?

[Jmellano]

i will speak to MDS on 1/8 about this, was given a 4th dose of rytary by MDS backup as MDS is on vacay since akathesia started up agasin

[LAJ12345]

one other thing you could try is a low dose of clonazapam. This helps my husband. He has 0.5 mg per day or 1 tablet, but he cuts it up and takes 1/4, 1/4, then 1/2 before bed.

[Jmellano in reply to LAJ12345]

the benzodiazepines scare the crap out of me because of their addictive capabilities, my late life partnter took ativan and was addicted

[LAJ12345 in reply to Jmellano]

I keep them hidden and just dish out the daily dose. I feel it’s like morphine. If the correct amount is taken to balance the pain or anxiety I feel it’s ok. He has been taking the same amount for a long time and can’t access more. I think the restlessness and anxiety and rigidity is a problem with the gaba pathway. Benzos balance the gaba like leveodopa balances the dopamine.

Levodopa is also addictive.

[Jmellano in reply to LAJ12345]

heaven help us…..

[betaupsx86]

My mother started experiencing something similar to Akathisia (Although it might be RLS) a few months after starting C/L. It's a pulling sensation in the legs that doesn't let her sit or lay down. She also describes some restlessness. Is this Akathisia or RLS augmentation? Could it be that her dose of C/L is too high?

[Jmellano in reply to betaupsx86]

I don’t know, my experience was a feeling I would have during off time on c/lwhere I felt restless and had to move all parts of my body and it wasn’t ryhthmic. When I switched to rytary, I had no more akathisia