Q: what is your experience of internal tremor / vibration / internal dyskinesia

Answer – first posted on HealthUnlocked – Parkinson’s Movement Community

 

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 parkinsonism 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 parkinsonism as y’all know … so to counter this, as soon as I start to feel that the internal tremor is about to break free (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 then things seem to get a bit more under 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 favourite 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!

@joannekarma
#RCtheParrot

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jsbcoo7

Mostly housebound these days I keep engaged with the wider world via social media. I knit and crochet for charity (and yarnbombs!), keep tabs on the state of our blue dot and find inspiration from exploration here on earth and in space!

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