has anyone heard of internal dyskenesias?... - Cure Parkinson's
has anyone heard of internal dyskenesias? i,v been getting palpitation type jumping in the chest and someone suggested thats what it might b
Funny that you should mention EXACTLY what I have experienced just recently. I even went to a cardiologist to ascertain if I had some heart problem. After wearing a Holter monitor for 24 hrs, I was given a clean bill. However, the occasional "lumbering" in the center ofmy chest suggests to me irregular rythmns which, until I read your post didn't make sense, AND NOW IT DOES. I have dyskenesias sporadically throughout the day (without connection to the medicine's effacy, and the heart afterall being a muscle, your analogy is very clever.
thanks cathi, i,v had this sensation for a while now and it can be frightening i,v had all the heart tests i even had a stent fitted but it made no difference,i then read something about dyskenesias and went to my gp and asked her about this,she said she would write to my neurologist for his opinion.
I have experienced this seveal times over the past twenty-one years. Im am sure it is not my heart, but it could be something like shivering, on the inside. I have never heard it called dyskinesia.
Is this related to 'inner tremors' ? I too get this but nothing shows on any tests. However I also get it in my lower abdomen on my affected side as well as in my chest. Dyskinesia or dystonia? Important distinction because of whether it is PD related or meds related. I think this is an under-explored aspect of PD, usually deferred to being anecdotal, but not studied. If anyone knows of any studies in this I would be interested to know.
Any neuros out there can you let us know if there is phenomona called internal dyskinesias.i agree lindy it is an under explored aspect of PD.among others.
My husband is the same iChecked his pulse unknown to him then next time his GP if he would check. The outcome is he has Atrial fibrillation is now on a beta blocker and Warfarin . No harm in checking with your GP .
We need more studies in this area. I too get internal jittering, mainly in my chest, feels like my organs have been zapped by tiny electric shocks. It can be quite debilitating and very worrying. Only lasts no more than a minute at a time. Glad to find I am not alone.
i,m getting longer periods of the fluttering lately and like you say it can be very uncomfortable and worrying,this needs looking into by the parkinsons doctors,there are so many non motor symptoms that they no little or nothing about.
I run a local branch of Parkinsons and one of our members has "respitory dyskinesia" and has spoken to me about it.It sounds very similar in some ways as to what you are all writing about.After the "fluttering her breathing becomes erratic/faster/slower etc...
Hi pp i think i have a friend with this but undiagnosed. Is the member able to link it to medication timing like shakingaj did?
sounds very similar pp,i also get the erratic breathing thing.
Before I had DBS I used to get really erratic shallow breathing, I am sure it was dyskenesia, because it used to happen at peak dose of my meds (d + 2 hrs). Another person I know was in hospital for a week or so with a similar issue
Alanrob
Is it just me, this thread sounds like lots of different things being discussed, cardiac palpitations, respiratory dyskinesia, internal tremor? I'm finding it hard to know what direction to follow, but I can say Ive never heard of internal dyskinesia.
I think people are just giving there opinions on what internal dyskinesia means to them if there is such a thing maybe it has another name but it looks like its quite common whatever its called,i aim to find out from my neuro,the trouble is you dont get enough time with them to ask about things like this and they sure as hell wont tell you these things can happen we have to find out from each other.
I have took a med called trihexyphenidyl for a while now and in order to try and get to the bottom of this i,m coming off this slowly to find out if this is the cause having read up about this PD drug i discovered that it can cause palpitation like symptoms.
When you go off walking in the hills and start to get rather weak from exhaustion because you've perhaps overdone it a bit. Then you get muscles feeling all weak and wobbly and perhaps they tremble quite a bit (probably not visibly so), especially when your muscles are under load. That sensation is what I get that feels perhaps somewhat like an internal tremor.
Accompanying the tremor there may be a cold sweat and some dizzyness, i.e. just normal symptoms of exhaustion. And with PD, muscles get used in a dysfunctional way that may lead to exhaustion. Certainly most PD folk suffer fatigue after relatively little physical effort.
I agree pete,thats exactly what happens when i go hill walking usually on the way down my legs feel like jelly,even though i dont get far these days i get an angina type pain almost straight away walking up hill.
Alanrob, well I'm sorry that you're unable to enjoy the hill-walking like you once did.
I get this when I am wearing off or have forgotten to take my meds or doing sudden physical activity after a period of inactivity. An interesting thing for me is that though I rarely have visible tremor, when I have a bout of this, if I get a glass of water the tremor is visible on the surface of the water. Cannot say that these sensations relate to any organ specific organ. I don't feel that they are palpitations. They are linked to respiratory difficulties, such as breathlessness and to wearing off. Both are worse on wearing off, though I had them prior to diagnosis and medication. I think that people are describing several different things here, but all not really described that well in the PD canon.......
Many with Parkinson's have internal tremors, I don't have visible tremors,but have frequent internal tremors. In research I've read more and more it is being accepted as much as visible tremors, and recommend to be treated as such. It took much longer to be diagnosed because of it, but nearly one third of all Parkinson's patients have no visible tremor. It isn't just a shaking disease.
I have read about internal dyskinesia and recall it limited to the respiratory system. Alas I can't find where I read about it. As voluntary movements are the target of PD and the lungs can be manipulated by voluntary movement (hold your breath), then it seems feasible that the lungs can suffer dyskinesia.
The heart is not subject to direct voluntary movement which leads me to conclude it is not subject to PD dyskinisia. Personally, I'd seek medical advice if suffering pain or fluctuations of the heart.
I don't suffer internal dyskinisia or tremor but was repeatedly asked during a recent drugs trial if I felt either symptom. I am due back for a follow up health check next week so will ask the PD nurse for details and let you know the outcome.
thanks for that grey much appreciated.
Hawthorne Berry is good for the heart, i used to get chest pains and it took it away.
Grey that is interesting. I have never heard the terminology internal dyskinesia but i know people who have respiratory dyskinesia, which includes disordered and rapid breathing. The same cause as other dyskinesia and can be a peak dose or a wearing off symptom as with any dyskinesia.
The internal tremor is a wearing off symptom for some people.
Hi there
A typically long-winded reply from me, but perhaps my anecdote will be of assistance 
Not long after my parkinsonism was triggered by anaesthesia in 2006, I started feeling a sense of internal "shivering" or tremor. Initially, it only seemed to occur when I was getting ready to go to sleep at night, I'd be happily lying in bed reading a book, my dog at the foot of the bed, and I'd feel a vibration or tremor through the bed. My dog, a rescue, had been with me many years but originally came to me with many fears/phobias so at first I thought this was him quaking and fear-trembling about something, so when I felt this vibration, I would comfort him a bit (without my specs I couldn’t actually see if he was tremoring… just figured that out of the two bodies on the bed his must be the one shivering!), carry on reading and... as was his habit... when I felt myself falling asleep and turned out my light, he'd jump off the bed and go to his bed.
After a while, I realised that it wasn’t my dog shivering but me – this actually first dawned on me as I was lolling in a bath reading a book and noticed that the surface of the water was vibrating. At this time, you can tell, the sensation didn’t dominate or, as came later, make me feel nauseous.
I mentioned this symptom to my neuro dude but he didn’t seem particularly interested in it so as I was becoming increasingly bothered as my family has a history of cardiac issues, I went to my GP (a family physician) here in the UK and he sent me for heart tests. I wore a 24hr Holter monitor and had an EKG and while there were no heart abnormalities found, I was found to be experiencing ectopic "storms" precisely at the moments I noted in the Holter diary that I was feeling the internal tremor/vibrations. The cardio-triage nurse who I saw at the first appointment and who arranged the tests had already prescribed 1mg bisoprolol on the basis of my symptoms, so when I finally saw the cardiologist she was happy for me to continue on the medication as it had made a marvellous difference not only to the internal but also the external parkinson's tremor, .
I have been taking Stalevo as my main parkinson's drug for several years now and this plus the 1mg bisoprolol really have kept internal and external tremor at bay. I should add that ttremor is not my main symptom (or maybe it isn't because of my drug regime .. bit of a Catch 22 there!) but like most people, as soon as my body perceives some kind of stress, external tremor rapidly increases from minor to maximum windmill effect.
My neuro dude was interested to learn of the beneficial effect of bisoprolol and pointed out that the individual presentation of parkinson’s is so different that I should just count myself lucky that I’d found something else to help with my range of symptoms.
Recently my internal tremor has started breaking through again... nothing ever stays the same with parkinson's as y'all know ... so to counter this, as soon as I start to become tremory (and it’s too soon for another dose of Stalevo), I pick up some light free weights and exercise my arms with them and walk on the spot for a few moments, moving in the style of LSVT-BIG (lsvtglobal.com/patient-reso... then things seem to get a bit more control again.
It's curious that neurologists (and others without parkinsonism) don't appear to pay more than lip service to this symptom - perhaps we should invite our favourit charities to task some of their researchers into investigating this aspect of the disease.
Perhaps it is up to us, who are living with a wide variety of symptoms, including this horrid internal tremor, and who know how life-interfering/attention-grabbing they are, to direct charities and researchers into directions that will not only help us live with the condition now but also, who knows, help find a cure or prevention in the future!
(edited to make it read a bit better!)
Very interesting and useful Brockie, as to research did you know that Parkinsons UK has asked for ideas for research, the form is on their web site. ( I have asked for research on breathing
problems). Decisions will be made in March.
I like this article: ncbi.nlm.nih.gov/books/NBK2...
thanks brockie thats very interesting,i,ll mention it to my neuro.
