Restlessness

[AlanaS7]

My mother is 82yrs old and has had Parkinson's for 10 years. She finds it very difficult to sit still and concentrate. It makes it difficult for Dad who is her carer as she is always up and down. Has anyone else experienced this and is there anything we can do.. Mum suffered from Restless Legs until she was prescribed Lyrica. I am wondering is a increase in Lyrica medication my make mum feel more settled.

[pdpatient]

@alanas7, I am sorry to learn about your mom's current situation which I am going to guess is and will be temporary. Please understand that this is a community of largely anonymous laypeople who can offer only their own experience with the disease and provide you with anecdotal information. Are you comfortable acting on this information to treat your mom with your similarly aged father ( i assume), as your mom's primary caregiver?

That being said, please provide more information and details and hopefully allow forum members to offer you their layperson opinions based on anecdotal experience.

Makes sense?

RKM

[AlanaS7 in reply to pdpatient]

Hello, Thank you for your reply and Yes, I do understand..Should I provide more details??

[pdpatient in reply to AlanaS7]

AlanaS7 , yes indeed, please do. Post your details here and you will get many responses from a number of different members who will be able to help you. I hope that I wasn't very harsh with my rhetorical disclaimer.

I personally have not much to offer. My experience in my opinion is atypical. I only get RLS when I am overdosed on Levodopa . I am 9 years into the disease. But I am younger 😂. I am 56. I don't know anything about Lyrica, but I know that there are patients with just RLS and guess what : the medication prescribed is Levodopa.

I have never read or seen patient with both RLS and Parkinson's. From a layperson's perspective 😅😊, I would speculate that your mom..mum, I am sorry, most likely is getting too much dopamine. Talk to your mum's doctor about adjustment to her levodopa dosage and that might do the trick.

Please keep us updated.

RKM

[AlanaS7 in reply to pdpatient]

Mum had very bad RLS. We were prescribed many different tablets but nothing worked until we tried Lyrica. It was a life saver! I will try less Levodopa and hope that this might lessen Mums restlessness. Thank you so much for your thoughts.

[park_bear in reply to pdpatient]

There have been other PD patients on this forum who have reported restless leg syndrome. In addition, restless leg syndrome does respond to PD meds.

I suppose anything is possible but dyskinesia usually affects the trunk more so than the legs.

Personally, when I get too much levodopa, the affected leg becomes stiff and hard to move rather than dyskinetic.

[AlanaS7 in reply to park_bear]

Mum doesn't have restless legs she has restlessness in general. She finds it difficult to sit still and watch TV. She can barely watch 10mins of TV before she feels the need to get up and walk around. It is very difficult for Mum to relax. She also has this feeling when sitting down in a chair. It can be quite debilitating for Dad.!

[park_bear in reply to AlanaS7]

I presume she is taking the standard madopar and not the timed release HBS version. In this case her plasma levels will peak about an hour or two after each dose. If what she has is an atypical dyskinesia as others are suggesting, I believe her restlessness would vary cyclically, more or less according to this timing.

[Juliegrace]

I assume she is taking some version of levodopa. The “restlessness “ could be dyskinesia.

[AlanaS7 in reply to Juliegrace]

Yes, she is taking Levodopa. I didn't think of this before as Mum doesn't suffer the typical writhing dyskinesia. Thank you so much for your comment!

[park_bear in reply to AlanaS7]

Which levodopa med and how much levodopa is she taking?

[AlanaS7 in reply to park_bear]

Mum takes Madapor 100mg 5 times a day.

[Juliegrace in reply to AlanaS7]

I suffer from dyskinesia almost all of the time while I am on. It varies from low-level twitchiness to extreme movement of my whole body, but my feet are definitely involved and if I’m at a certain point I have to be standing because sitting is very uncomfortable. I let my meds wane (which creates other issues) at night so I can relax a bit. Is she able to tolerate off periods? Def discuss with your doctor.

[pdpatient in reply to Juliegrace]

@juliegrace.

I am inclined to second your layperson's anecdotally based, subjective opinion that you suspect that it represents the symptoms of pesk dose dyskynesia. That being said, only an MDS can make an informed and qualified diagnosis.

My so called RLS experience is always accompanied with terrible discomfort almost exactly as is described by the OP (original poster). Her mom likely just needs to skip a Levodopa dose or two in succession periodically like every 4 weeks and she might just be ok. Again, it's going to be the good Doctor's call.

I find that I have to let the levodopa wash out or flush out of the system from time to time and I feel good.

RKM

[park_bear in reply to pdpatient]

Pdpatient - there are occasions when you have called me out for acting too much like a doctor for your tastes. Now it is my turn:

"Dyskinesia - for sure"

NO! You are not a doctor, you have not examined the patient, and you have no right to make this diagnosis with such certainty. Dyskinesia - maybe.

[pdpatient in reply to park_bear]

LoL, @park_bear, just read this now. I can see why my comment wow be misinterpreted.

In my defense, don't you think I did a great job of CYA for all of us with my first comment on the post with an unusually long disclaimer? I think HU should have a similar short disclaimer that serves as a warning to the innocent and unsuspecting.

Have a great rest of the long weekend 😇

RKM

[MarionP in reply to pdpatient]

PD patient: an effective disclaimer can be surprisingly short.

For instance, "Pays zero for professional liability insurance" pretty much fits and delivers what's needed before everything else for any occasion here.

[pdpatient in reply to MarionP]

LoL, I hope that was supposed to be funny😂

RKM

[MarionP in reply to pdpatient]

Actually, no. Why, did it sound funny?

[pdpatient in reply to park_bear]

@park_bear. Above comment edited. See below :

I am inclined to second your layperson's, anecdotally based, subjective opinion that you suspect that it represents the symptoms of pesk dose dyskynesia. That being said, only an MDS can make an informed and qualified diagnosis.

My so called RLS experience is always accompanied with terrible discomfort almost exactly as is described by the OP (original poster). Her mom likely just needs to skip a Levodopa dose or two in succession periodically like every 4 weeks and she might just be ok. Again, it's going to be the good Doctor's call.

[Despe in reply to park_bear]

PB,

He/She reminds me of another X-member of this forum under a different user name. . .

[MarionP in reply to Despe]

...and a few not-so-ex ones too.

[MarionP]

RLS can be its own syndrome, set of observable specifics and can be brought on by other than PD meds, other than levodopa meds and other than antipsychotics, for instance certain stimulative antidepressants can do it, and is this possible that when one is perhaps taking more than one psychoactive medication or psychotropic medication then there can be some combining of effect, and that's all apart from individual med dose matters...this is the reason you must have at the very least a psychiatrist and/or neurologist, probably if I could only choose one I would take the neurologist, but even neurologists don't know what they should of psychiatric medications, and so there is a certain amount of potential gap between the two specialties, such that you really kind of need both, and willing to work together or be on a similar team or similar clinic, and encouraged to visit with each other if at all possible. RLS can certainly be an acute reaction to an antidepressant of the SSRI variety, but not all ssris, just as it is true not all antipsychotics, and all dopamine blocking meds singly impose rls, it's a little more complicated than that and it has a lot to do with the person's individual history since some people can have RLS as an idiosyncrasy and opposite reaction to that normally seen with a particular medication. You really need the doc.

[condor39]

Hi AlanaS7,

When I developed RLS, I had no idea how serious and distressing it can be. More than “distress” it was agony not to move my legs.

I am taking a high dose of meds. (Madopar, called Prolopa in Canada) 25/100, three capsules every three hours all day, two caps. at 11.00 pm and 0300 am

The RLS came on every evening at about 6.00 pm.

My meds are supervised by a Medical Movement Disorder clinic, so I called them and said i needed some relief.

I was prescribed Pramipexol 0.25mg, 1/2 tab taken once at bedtime. It worked at once, like magic. After two months the RLS returned in a much more mild form, and I doubled the dose to one tab. Four months later, there are no problem .

Don’t forget your MDC treats hundred of patients a year, and they have enormous experience. I recommend you get your advice from them.

I take no supplements.

Good Luck

[Sydney75]

Hi rather than RLS could it be almost as if she is agitated? That is a non-motor symptom of PD that my husband has at times. Stress makes it worse.

[Husbandsupporter]

I have read the other comments and I hope you will too. The more information you have to formulate the best consise description; times, how long it lasts, examples of how your moms restlessness lasts, etc., will help her Dr have a clearer focus. I haven't read, unless I missed it, the question to you about exercise and your mom's ability to be active.

Not discounting at all the discussion about LD amounts or doses, but is your mom doing any type of aerobic activity to increase her heart rate, which in turn gives more oxygen to the muscles ? Even sitting with arm and leg exercises can be of great benefit. Doing 15-20 minutes at a time of intentional movement could help.

My husband has had PD for about 5 years and if he sits for over an hour or so, I've noticed his legs have to move . I have him get up, walk for a little as 2 minutes then come back. It makes a difference.

Since everyone reacts differently to medication, take all you learn, hear, read, and hopefully you'll be able to give a full picture to have your mom get some relief.

All the best to you and bless your father as her caregiver. Prayers for your mom especially to have peace and comfort.

[Dragona]

My dad is like that drives mum crazy but he has dementia

[Enidah]

Alana, this sounds very much like what happens with me when I am on and have perhaps taken more levodopa than I needed. I simply cannot sit still. I will usually end up watching TV or whatever I'm doing standing up. It is a all-consuming restlessness. I bounce between uncomfortable on and uncomfortable off. Get sick of one try the other for a while.😬

[AlanaS7]

Thanks so much for your reply Enidah. Yes it is very debilitating and almost hard to explain! It seems to be just a restlessness and desire to move!