Whole-body shaking

[Daisies22]

Hello,

I have a question regarding whole-body shaking and would be grateful for any information you could give me.

Five years ago when I was 49 I was diagnosed with Parkinson's disease. My only symptom was that within a few months my whole body suddenly became very slow. It was bi-lateral, and equally bad in both sides of my body.

I was given Madopar and a huge dose of Rotigotine which made things infinitely worse. The Rotigotine made my muscles extremely tense which caused the whole-body shaking.

I'm trying to understand if the shaking I experience is a PD symptom or not.

Could PwP experience tremor if their muscles are relaxed or the tremor appears as a consequence of the muscle tightness only?

Thank you in advance,

[Shakinginnc]

Hello I am almost 67 and female. I was diagnosed in 2017 I am currently on no medication for PD ( took myself off completely) long story! I also suffer from full body shaking with the dreaded head Bob!!!! Oh and I have trouble with texting lol! I have many symptoms but I think the toughest is the tremors and dystonia . PWP symptoms can vary tremendously from one person to the next , but know we are all in this battle together.

[Daisies22 in reply to Shakinginnc]

Thank you for your quick reply.Do you mind sharing the medication you were on and how you managed to get off of it?

D.

[Shakinginnc in reply to Daisies22]

Not at all . I was on

Carbo/Levi 25/100 5 times daily

Duloxitine 30 mg 2 in the am

Gabapentin 600 mg upped to 800 mg - 3 between 8:30am and 3:00 pm and 2 at 19:30 pm

Clonazpam 5 mg 1 at 10:30pm

Carbo/Levo 25/250 1 @ 10:30

I was in others before that but can’t remember all the names sorry.

I was a vomiting zombie for many years until I had had enough!! I do still see a Neurologist but land will take a Carb/Levo 25/100 extended release at bedtime if the pain from the dystonia is real bad but since I have been “off” the medications I am doing so much better.

[JeanieBeanie in reply to Shakinginnc]

That seems an awful lot of medication. My HWP who has had it 30 years is only on Selegiline and Sinemet plus.

[Daisies22 in reply to Shakinginnc]

This is a lot of medication and what you have achieved is truly remarkable!Thank you for contacting me and all the best!D.

[Divii in reply to Shakinginnc]

Thanks for sharing; how did you stop the meditation? Didn’t it impact your functioning ?

[Daisies22 in reply to Shakinginnc]

Apologies, it's me again. I just was wondering if you were told what the reason for the whole-body shaking was. Is it part of the disease or it is purely side effects of the medication?Also, how often do you get it?

Any medication you found helpful?

D.

[Alphasyn]

Change your neurologist or ask first why he overdosed you on rigowhatever. A (rest) tremor could be part of your PD, but doesn't have to. I think around 30% of PwP don't have a visible tremor and if you only got it after the medication, it is clearly wrong.

[Daisies22 in reply to Alphasyn]

My point exactly!I asked him this question and his answer always is "This is your Parkinson's".

D.

[kipar in reply to Alphasyn]

J'ai des tremblements violents a partir de 3 heures la nuit et jusqu'a ce que je me lève. Et je ne prend que modopar trois fois par jour : 125 62.5 125 soit moitié de la dose préconisée par le neurologue. Donc je crois que ce ne sont pas les médicaments. Moi aussi, je voudrais bien l'explication. Bonjour à tout le monde

[Daisies22]

Just wanted to clarify the last paragraph in my post.When I lie down my body is at rest but my muscles might or might not be relaxed.

I only shake when my muscles are not relaxed. The shaking is always in my whole body. If I try moving a muscle the shaking gets worse (amplitudes and frequencies increase).

This means that I can't exercise and am confined to the house and garden only.

I was wondering if there are other PwP who have similar experience.

Thank you.

[realk]

I had a terrible tremors and episodes of whole body shaking,,What helped me a lot was chi gong exercise every day in the morning...If I don't exercise every day, I am getting back to tremors again.. youtube.com/watch?v=nkk6ya8...(Not working as expected?) this is the simplest hour of qigong but on me it has a amazing effect

[Daisies22 in reply to realk]

Thank you so much for the link, I'll definitely will try this exercise! And I'll let you know how it goes.D

[park_bear in reply to Daisies22]

Qigong has been helpful for me also. My story here:

healthunlocked.com/cure-par...

[realk]

First days/weeks maybe months I was not able to keep up with the video at all. Couse of stiffness or dyskinesias, but as I kept exercising no matter what It became my kind of reset/reference point, I realized that it helps me also with another PD symptoms...

[park_bear]

Dopamine Agonists such as rotigotine are best reserved for when levodopa no longer works due to the propensity to cause undesirable side effects. To prescribe a massive dose of rotigotine to a new Parkinson's patient is unconscionable.

[realk in reply to park_bear]

But as per my experience some neurologists are prescribing agonists as a first line therapy to delay levodopa as much as possible and switch to levodopa when the agonists no longer working enough for their symptoms...BTW be aware of any behavior and personality changes noticed by yourself or your family members especially if related to compulsive behaviors as compulsive shopping or gambling (even investing in stocks or crypto) and trading can be the case!! Majority of the PD drugs (agonists seems to have the biggest impact) changes our rewards centre sensitivity and we are more prone to develop a dependency. This can really have devastating effect on your life. The last thing you really want with this diagnosis is to blow up your life savings or take a loan. No matter if you ever gambled in your life( i never did before) ... my own experience...

[park_bear in reply to realk]

Yep - impulse control disorder. After 5 years of use 50% of dopamine agonist users experience impulse control disorder: compulsive gambling, sex, eating, or shopping. Some seniors have lost their life savings, their marriages or their homes.

The idea that levodopa accelerates the arrival of levodopa -induced dyskinesia has been disproven. Late–stage patients in Ghana who did not have access to levodopa were just as vulnerable to dyskinesias as patients who had been taking levodopa for a long time. See here: academic.oup.com/brain/arti...

[WinnieThePoo in reply to park_bear]

It's important to emphasise the potential of compulsive disorders and dopamine agonists. The 50% you quote is not universal, but the warning to take care is not invalidated by the stats chosen. My wife is alert to the dangers and monitoring. We pushed the boundaries on the glove project with near daily postal deliveries. I called it prototyping but f*** up and failed attempts would be more like it. Anyway the poor confused Postie can't understand how we went a week with no parcels last week. And only one or two for the 3 weeks before that. He needn't fear - I need an upgraded filament feed for the 3d printer I bought because I couldn't keep prototyping with minimum orders of 50 euros. But just one parcel - not daily parcels . (a fair few were "wedding essentials bought by my wife) The gloves soaked up hours of my time, as well as a few bob in bits that didn't work. I'm not sure what to do with myself now. (kidding. Golf, tennis, cycling and WORK catch up)

[park_bear in reply to WinnieThePoo]

Impressed with your results since you seem to be living a near normal life.

[WinnieThePoo in reply to park_bear]

Thanks. It's catching up. But hoping to stall it a bit longer. Like everyone I guess.

[Divii in reply to realk]

My neurologist did just that; I was on pramipexole (still am) to delay levodopa; managed to stay exclusively on pramipexole for good six years , then during pregnancy switched to levodopa

[Daisies22 in reply to park_bear]

I could not agree more!I was prescribed a starting dose of 6 mg per 24 hours which completely paralysed me within an hour or so post application. I couldn't move at all for several hours. On day three I ended up in Accident and Emergency where the dose was increased to 8 mg per 24 hours which was even worse! Naturally, my Neurologist ignored our feedback and approved the higher dose. (I am yet to hear about an A&E department where the Consultant would consider reduction of the dose of the offending medication! ).

I have it in writing that they didn't know why Rotigotine affected me the way it did but they were happy for me to come off of it having spent three years on it. No support was given.

D.

[park_bear in reply to Daisies22]

You had a bad reaction and they increased the dosage. This is the kind of thing that leaves me wondering what they do in medical school to remove common sense from doctors. They are not all that way, but this sort of thing is way too common.

[realk in reply to Daisies22]

You should be starting Neupro at 2mg and slowly increasing to max dosage at 8mg. I was not tolerating Neupro at all at the beginning - i felt terrible as it somehow paralyzed me every time I changed the patch for a ho ur or so..But my neuro told me not to read about the side effects and keep using it . Great advice! After one year of using, I developed a impulsive control disorder so finally I had to go off Neupro immediately. 'I am sorry that you got into this trouble but it sometimes happens to people on dopamine agonists'. His calming words really helped me to feel better after losing my life savings...Lesson taken ,but expensive.

[Daisies22 in reply to realk]

Thank you so much for sharing your experience with Neupro. I'm so sorry that you had developed the addiction disorder with all the emotional and financial consequences that are "part of the package" of taking Dopamine Agonists.I was lucky in this respect as I never developed any of these. However, the paralysing effect of Neupro at the doses I was taking was horrendous. It took me three years to reduce the dose from 10mg to just under 0.7 mg per 24 h (at the moment). Even at this low dose I'm not free of the effects of the patch - cardiac (arrhythmia) and motor (unable to move for hours and in need of 24/7 care).

How did you manage to come off Rotigotine? Did you get any replacement agonist first or you did it 'cold turkey'?

D.

[realk in reply to Daisies22]

I had to quit cold turkey, and was said to throw away all patches I had left.. After 4 years on Neupro not an experience you enjoy to have. All my motor and also motor symptoms worsened a lot. I had terrible backpain, gait freezing all the time I went outside - to the point that people called ambulance for me 2 times...I didn´t get any replacement of agonist as my neuro doesn't want to risk I would get back to the compulsive disorder. Thanks God, the urge stopped...I was put on COMT inhibitor Ongentys..

[Daisies22 in reply to realk]

Sounds awful. Glad that the Dopamine agonist nightmare is over for you.D.

[park_bear in reply to realk]

>"my neuro told me not to read about the side effects and keep using it...After one year of using, I developed a impulsive control disorder ... 'I am sorry that you got into this trouble but it sometimes happens to people on dopamine agonists'. His calming words really helped me to feel better after losing my life savings."

This is gross malpractice. He owes you your life savings, and should also be subject to disciplinary action.

[realk in reply to park_bear]

I have even told him that Neupro makes me sick and I have strange feelings upon using it... To be honest I didn't mention to him what I was going trough with my compulsive trading at the beginning but I honestly had no idea that it was connected to antiparkinsonics .. Anyways,he should warn me and my family members about this dangerous side effects. Actually the same

Neuro prescribes medical cannabis and I had to sign that I am aware of its side effects....

[park_bear in reply to realk]

Exactly - people fall prey to this because they have not been warned and have no idea why it is happening. The neurologist is clearly to blame - he was aware of the danger, he hid it from you, and actively discouraged you from finding out on your own. He should be held accountable if you are so inclined and can find an attorney to take the case. Or in the alternative file a complaint with the state medical licensing board.

Trading eh? I'm a securities trader . Discipline is essential, and yes compulsive trading could cause massive losses.

[kipar in reply to Daisies22]

Bonjour

Il faut absolument lire le livre du neurologue Dr Maldonado. Traitement écologique de la maladie de Parkinson. Ca fout la trouille. J'ai refusé les agonistes pendant 4 ans et demi et je m'en félicite. Je diminue le modopar et je ne me sens pas plus mal à part les tremblements (et de toute façon le modopar n'a pas de prise sur eux)

Ce livre faisait écho à une vidéo édifiante ou un neurologue canadien ou americain montre un triangle en expliquant que le petit triangle du dessus est ce que retiennent et "traitent" alors qu'il faudrait partir de la base et réparer les mitochondries pour que cela agisse sur le reste. Trois piliers au moins pour stopper le progression de la maladie : sport, alimentation (sans laitage, ni gluten, et peu de sucre) et relations sociales (se faire plaisir , faire de nouveaux amis, sortir.....) pour fabriquer de la dopamine

Je ne trouve plus la vidéo, je vais la chercher

[kipar in reply to kipar]

Erreur : Traitement écologique de la maladie de parkinson. Excusez moi

[Gymsack]

I agree with Park_bear 100%

plus PD tremors disappear when concentrating and reappear when relaxed , no exceptions.

If your tremors, as you say only appear during concentration then you have something else .

Familial Tremor is hereditary and acts as you describe and is very treatable , but not with PD medication.

Maybe look to see where the closest local PD support group meets and join and talk with other local parkies and find out who their doctors are. The Parkinsons Society in your country will tell you who you should contact locally to join. Your spouse or care giver will also be able to meet others in similar roles and the home made cookies are great .

good luck

[JeanieBeanie in reply to Gymsack]

Me too. If you have a PD nurse, which you should have in the UK, speak to her.

[carpark88]

I have similar symptoms. I get really shaky (more like jittery) when I am stiff and my muscles are tense, however, it is worse when I am “OFF” and in the mornings also. I don’t have a visible tremor, just lots of stiffness and bradykinesia.

[Daisies22 in reply to carpark88]

Thank you for your reply.Have you found a way to manage the tensing of your muscles?

And also, do you mind me asking if you are on any anti-Parkinson's medication?

I recently discovered that Madopar is causing the extreme tension in my muscles. This I didn't expect. Now I'm trying to reduce the daily dose of Madopar but failing for various reasons.

My Neurologist told me he was happy for me to completely illiminate Madopar but he couldn't advise me how!

D.

[carpark88 in reply to Daisies22]

I use Carbidopa/levodopa which does help my muscle tension, most of the time. We have Sinemet instead of Madopar here in the states. I can’t take Sinemet IR because it makes me so nauseous. The ER form of Sinemet is much more tolerable and Rytary is even better and rarely bothers my stomach, but now I have some concerns about whether Rytary is making my speech problems worse…

[Daisies22 in reply to carpark88]

I have a choice of Madopar or Sinemet here in the UK, though I wish I didn't need either.Thank you for sharing your experience with Sinemet. It is helpful to know what to expect.

Best wishes.

[pdpatient in reply to carpark88]

Rytary destroyed my speech. I had to go back to Sinemet.

[Shakinginnc]

I wasn’t on any medication when it started. I still have them but not as often as I used to , my old Neurologist told me that the range of DP symptoms can vary greatly, so no real answers.

[Daisies22 in reply to Shakinginnc]

Thanks.With me is so debilitating that I can't leave the house as when I get the shaking it's so severe that I have to lie down and need my husband to hold my arms and legs otherwise the shaking gets worse.

Wishing you all the best.

D.

[Divii in reply to Daisies22]

I feel for you; do you want to ask your doctor about propranolol if it’d help?

[Shakinginnc]

I am so sorry you are debilitated by them 😢 Your Neurologist needs to find a way to help you !!!I know this journey is not an easy one for anyone 😞

[Divii]

I always had anxiety tremors which subside with propranolol. Yopd since 2012

[Daisies22 in reply to Divii]

Thanks, I'm also YOPD and on 10 mg Propranolol 4-5 times daily as madopar causes tachycardia. I can't take a higher dose as my pulse rate gets very low. I've been on any dose of Madopar starting from 500 mg per day and reaching 1100 mg per day. Now I'm down to 850 mg per day which is still too high for me. When I take madopar in 15 min it just paralyses me. I have to wait for about an hour or so for the concentration of levodopa in my blood to get to about half of its peak value and only then I can move again. I really doubt it that this is the expected effect of this medication.

When I asked my Neurologist to explain what was happening his response was, and I quote, "you need to stop talking and start listening!"

[Divii in reply to Daisies22]

He sounds insane; most of them are but still you need to find another one who’s less bonkers..

[pdpatient in reply to Daisies22]

Hi Daisies, worry not. If you didn't have your name next to this post and comment, I could have sworn that I was describing myself 😊

[MerckK]

I am also a PD patient for last six years. My whole body shakes sometimes when I am angry or disturbed. As per my neurologist , it is because of rise in Blood pressure. You can also check the BP at the time of shaking.

I am prescribed capsule Betacap TR 40 which manages this symptom. I suggest you to do exercises for BP control and meditation

[Daisies22 in reply to MerckK]

Hello and thank you for your message.

I think with me is very different. You said it yourself, "My whole body shakes sometimes when I'm angry", suggesting that Psychology plays a role.

I shake and get (temporarily) almost completely paralysed 15-20 min after taking a Madopar 100/25 capsule. This paralysed state lasts approximately 90 min, and it happens every time I take madopar, which is 7 times per day. During this time I can't move even my fingers and if I need to someone has come and do it for me.

Often my pulse rate goes up but my blood pressure is under control.

I was just wondering if levodopa has such an effect on other PwP or it's only me.