Recently diagnosed with tremor predominant Parkinsonism. I’ve been prescribed ropinirole & was warned that it may not help the tremor but actually it helps a lot. I’ve gone up from 4 to 6 mg this week which has brought a further improvement but has introduced an unpleasant side effect. It’s a form of anxiety which is very reminiscent of a feeling of guilt. Other than liking 70’s prog rock I’ve really got nothing to feel guilty about.
I feel inclined to stay with it & try to convince my small brain that the feelings are a biochemical lie & should be ignored. However, mental health’s a precious thing & playing fast & loose with it may not be the best idea.
In my opinion, dopamine agonists such as ropinirole have a place in the treatment of Parkinson's, and that place is only when levodopa medications fail to do the job of alleviating Parkinson's symptoms. The reason for this that over a period of 5 years 50 percent of dopamine agonist users acquire an impulse control disorder - compulsive gambling, sex, eating, or shopping. Reference: n.neurology.org/content/91/...
Some seniors have lost their homes and/or marriages due to compulsive gambling. Some have found it impossible to quit dopamine agonists due to dopamine agonist withdrawal syndrome. Dopamine agonists can also cause orthostatic hypotension - loss of blood pressure upon standing. Reference: pubmed.ncbi.nlm.nih.gov/110...
At one time it was fashionable to prescribe dopamine agonists because it was thought that levodopa usage accelerated the arrival of dyskinesia. This was found to be not the case. Reference: pubmed.ncbi.nlm.nih.gov/250...
My advice - inform the MD you wish to be treated with levodopa medication. If the MD does not cooperate find a different MD.
Also, you cannot just quit dopamine agonists, or for that matter levodopa, suddenly. You have to taper the dose over time.
All of what Park Bear writes is true. But he also had a bad experience with dopamine agonists (orthostatic hypotension) which no doubt colours his view. You don't mention your age. Agonists don't agree with older people but conversely those with agonist compulsive problems are often younger PwP. I personally know people who have lost their homes through gambling, lost relationships through promiscuity and others with out of control shopping I am not naive about the potential dangers. However there are a limit to our drug choices and agonists have their place as long as you ask anyone you live with to monitor your behaviour. People with addictions become devious and hide what is happening.
Your problem about anxiety, I have not heard of it as a side effect of agonists but it could be. Anxiety is also a symptom of PD. It can be very debilitating. Your plan to discuss both these issues with your neuro is good. I found the UK movement disorder neuros up to date. The generalist neuros may not be and your GP may not know a lot either. Best wishes, it can be overwhelming in the early days.
Many thanks for taking the time to help me Hikoi. It’s wonderful to have a resource like this where kind people like yourself & bear_park are willing to help a newbie.
I have to say I have great confidence in my neurologist. His first clinical impression was confirmed by DAT scan & his reports to my employers (I’m 60) & my professional regulatory body have been exemplary. I will certainly discuss all this with him.
It would seem prudent at this point to give my brother power of attorney (uk) over my financial affairs so that he can keep an eye on my outgoings.
Are you aware that you have no need to go through all the side effects of medication? Have you tried the fast walking, or do you not believe in it? The Mayo Clinic trials on High Energy Aerobic Exercise showed that the brain produces a large quantity of GDNF when we do that type of exercise, which fast walking is. That GDNF repairs the damaged brain cells and we get better. As you get better you can cut down on your medication and the side effects.
Within two years you could be medication-free and moving a lot more freely. Why don't you give it a go?
Hi. At 88 I don't remember too many things, but I do remember I have spoken to you before. Your message gave me the impression you were a newly diagnosed person. My apologies for wasting your time.
" The relative efficacy of trihexiphenidyl hydrochloride, amantadine hydrochloride, and low-dose carbidopa-levodopa in reducing parkinsonian tremor was investigated using objective techniques. Trihexiphenidyl and carbidopa-levodopa decreased tremor by greater than 50%. "
JasJJ, Levodopa has not stopped my tremors either, but taking Propranolol has decreased my tremors also. I was surprised to see someone else in the same situation I am in.
Yes, I have a PD symptom of feeling off balance, and also, I would feel like my feet were stuck to the floor at times. It doesn't happen often now. At times I would wonder do I really have Parkinson's. I have never heard of MDS, but when I saw it in your post, I googled it. I have most of the symptoms listed under MDS, so I will ask my doctor to give me the test to find out if I have it.
it’s interesting park_bear that your orthostatic hypotension was caused by the dopamine agonists. My husband had it as one of his symptoms, along with extreme apathy, before diagnosis. It’s no wonder it’s all so overwhelming at the beginning.
levodopa does not help HwP…my research shows that PD patients are not deficient in dopamine and by using this drug you are adding more dopamine to the neurons where it should not be…it’s toxic…b1 therapy is the drug of choice, along with other supplements healthy for the brain.
Anxiety often seems to come as a result of too much of some drugs so reducing might help. Most things seem to build up initially over time to a steady state. I’m not sure about ropinirole, but often the blood levels rise over the first few days or so of something then level off so you might have shot passed the level that provided extra relief and into a level that is slightly too high.
I would go back to 4 for a day to offload a little in your system then if it can be divided try 5 for a few days and see if that feels better.
If anxiety won’t go a way you could try a small amount of clonazapam . Hubby takes 0.5 mg per day cut up and split over the day which helps. Or try GABA gummies or sublingual as they can reduce anxiety.
Thank you. What you’ve written feels right. The GABA gummies sound like a great idea, I’ll run it past the neurologist when I see him again. Very grateful for your help & advice😀🙏
This is where I got mine. I have the KAL one. 25 mg. Start low and gradually increase it if needed.
Some of them have other things too like inositol and theanine which are also supposed to help. I would avoid the ones with folic acid as that isn’t the form of folate you want to be taking. Better to take the other things separately I think as if you take several supplements with the same things in them you can get too much of some things.
But maybe they won’t let you import it to the UK. I think I’ve got gummies from Amazon once too.
I started on Ropinirole when first diagnosed 4 years ago. The Neuro/movement disorders specialist said that he found the dosing regime around meals with Levadopa was onerous for the newly diagnosed adapting to their situation, hence starting on an agonist. Medication certainly helped but anxiety and apathy were still very much prevalent, so I was put on a low dose of Madopar, which made a big difference, with one 7gm Ropinirole in the evening. Interestingly, when reading the Madopar leaflet, I found a warning about the possible addictive side effects of taking Levodopa. Be vigilant whatever you take and good luck.
Thank you🙏. Dosing around lunchtime would be a problem at work….getting a lunchtime is a problem at work😂! The strong message I’m picking up from all the lovely people on here is to be vigilant. I need to convey all this information to friends, family & colleagues & hopefully will be able to give me a touch on the rudder if needed. Thanks again😀
I was also on Ropinirole for tremors. I was in it for a while and then I had three side effects: “marbling” on my arms and legs (looked like someone took a red marker and started drawing on them), bad swelling in my feet (wasn’t a problem over the summer when I wear slip ins and no socks, but come October, I couldn’t fit into my shoes), and a third one that I can’t remember.
Anyway, I switched to Artane. Initially, I took one 2 mg pill twice a day. One day, I didn’t realize that I hadn’t taken it (I was taking it with my 7 am and 5 pm CL and B1, and my husband later found it on the floor). My tremor was fine without it! I’m down to 1 mg once a day (taken around 10 am, since it also has to be on an empty stomach.) There are some side effects (my memory is shit; but that could be other things), but I don’t have hallucinations or any others.
Just putting this out there as another option. Figuring out the right meds and dosage can take some time. Hang in there!
Thank you. It’s going to take some time to work out what works & separating out what’s caused by the Meds what’s caused by the Parkies. Thanks for the advice🙏😀
Thank you. I may well do that. At the moment I’m spending some introspective time trying to describe to myself what it is I’m actually experiencing as there doesn’t seem to be any logic to it. Once I’ve done that I maybe able to work out how to manage it. You’re right though, I may need professional help. Thanks🙏😀
One big problem is that PD is different for everybody.
I take Rytary, and I sometimes have tremors with stress. My bigger issues are cognition and constipation.
I should change my group name to FormerCouchPotato because that's what I was until I was diagnosed at fifty-nine. I am all in now. I work out six days a week, including two days of Rock Steady Boxing.
My wife says I am looking better, sounding better, and less foggy.
I was diagnosed with PD three years ago. I wonder when I'll reach the point of telling an OP to ignore his doctor's advice and try my suggestions. I was prescribed Rytary and it seems to work well enough. But my main symptom is double vision. If I wait beyond 5 hours the diplopia is back but goes away within an hour of taking another Rytary dose. I also have a tremor in my arm but nothing helps that. But I've never had any of the more common symptoms like bradykinesia or imbalance.
My pwp is on Ropinirole, rasangiline and trihexphenidyl. (Please excuse spellings!) The latter is the one that was added as the others didn’t help the tremor. That did. He’s 55 and been on it maybe a couple of years now.
Looks of very knowledgeable people on here with some interesting replies I just thought I’d add my bit 😊
Btw, I don’t think prog rock is anything to feel guilty about. It’s not jazz!! 🤣
My Mom has essential tremors which is why I was diagnosed with Essential tremors. But within a year, tremors progressed and I have postural and rest hand tremor on one side. That is when neurologist said that it is PD. He prescribed Amantadine which didn't do anything. The he prescribed levedopa and it didn't help. He recommended me to MDS. Still waiting for my appointment with MDS. My family doctor prescribed propanol which is helping with tremors
You are probably experiencing a type of akathisia.
The dopamine receptor agonist drugs target the D2 and D3 dopamine receptors and enhance their dopaminergic effects.
The newer antipsychotics used in psychiatry work as antagonists of the same 2 receptors.
But nothing is as straight forward in the body.
Partial agonist receptor action can paradoxically reduce dopamine movement into and out of a cell causing an effective or net reduction.
Akathisia is poorly studied. In psychiatry young adults with psychotic illnesses often are assumed to have added anxiety and get additional sedation.
They get better relief from drug induced akathisia with slight reduction of the drug and beta blockers. The offending antipsychotics are usually those that act on the D3 receptor.
The fact that beta blockers help so much is indicative of some interaction of norepinephrine (noradrenaline ) with the dopamine D3 receptor.
DOI
Akathisia was one of my earliest symptoms at the point of decline into diagnosis I did not recognise it ( despite being a hardy seasoned and pretty experienced intensive care physician),
I now have re-invented myself as a general psychiatrist and use a lot of newer antipschotic drugs in an Early Intervention in psychosis out patient service. Our community psychiatry nurses have learnt to spot akathisia very easily after a session in my clinic.
I am contemplating going back to do some postdoctoral work on D3 receptors if I can get myself to endure the tedium of doing my own laboratory bench work ( my credentials are tilted towards clinical rather than research so not going to get graduate students to do the work)
A suggestion would be a small gradual reduction of the ropinirole dose and some propranolol till it gets toned down with the consent and supervision of your doctor
Personally I prefer using a long acting betablocker like bisoprolol or twice daily metoprolol in very low doses.
pearlette I am so very grateful & I’m intuitively confident that you’ve hit the nail on the head. This describes what I’m experiencing. Before meeting my neurologist my Dr had tried me on Propanolol but it didn’t help the tremor. I’ve got a small number left & have been tempted to try them for their calming effect, but resisted to avoid complicating my neurologist’s analysis on follow up.
My subjective experience is that moving from 4 to 6 mg has “tripped me” into a different state. Since upping the dose I twitch/shudder in what feels like a semi conscious attempt to “shake off” the perceived anxiety (it’s not a Parkinsonism movement like my tremor).
Many of the kind people on here have warned me to be vigilant in respect of impulsive behaviours. I wonder if those behaviours are the brains attempt to compensate for the paradoxical reduction in dopamine movement which you describe.
I will most certainly ask my neurologist’s permission to follow your suggested course of action. I can’t thank you enough. 😀🙏🙏
I have also learnt a great deal from many of you. The wealth of individual experiences and the ingenuity that is shared here is barely glimpsed in conventional clinical practice.
Thank you . Will try my best to help when I am able to.
my husband was prescribed the Neupro patch after Madapar seemed to do nothing. At that stage he had been diagnosed with Lewy Body Dementia(a Parkinsonian dementia). Within a few weeks he was rediagnosed with Parkinson’s. What they thought was dementia was actually extreme apathy. It totally disappeared and turned his life around.
The urges that park-bear mentions don’t occur frequently but certainly needs to be monitored by the neurologist (and the patient). Our wonderful neurologist has taken a couple of patients off Neupro for that reason.
As park_bear says, it shouldn’t be used initially, but only when the other drugs don’t work.
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