Does anyone identify with these symptoms
I have no motor Parkinson's and was diagnosed in 2022. The symptom that I struggle so much with is when my dopermine is low or none there . Basically an -off-. My chest ,throat, stomach all tighten up like I have been put in a really tight corset. I feel like I can't breathe properly and then I get high anxiety which I try and control with breathing exercises . Sometimes it gets so bad I feel like I am going to die. It's terrifying and I get up to about 5 per day. My meds are meant to be taken every 3 hrs but sometimes these vile symptoms come on an hour early. I can always tell when I am going to get an. Attack. My ears ring, I feel a. aura and nauseous and my trunk area swells up and everything is so tight and this is when breathing becomes difficult.i don't have a life any more as there is no time between episodes to go out. Also as episode can start strongly as I take my meds and it takes at least an hour for the meds to work. I sometimes get an hour at this time and then the cycle starts all over again. The episodes are really debilitating and it would be impossible to work through them with the weaknesses that comes on at the same time.
I do hope someone else has similar symptoms as I feel so lonely and isolated. 
Hi I have had PD for sixteen years now and a lot of the time it’s a hit or a miss when I take my meds as they don’t have the same effect. I’ve noticed for the last couple of months when I take a bad “off” I get a tightness in my throat (I feel like I have something stuck in my throat and I’m choking. My chest tightens as does my stomach I feel like I have something tight around my body or it is a heavy weight I don’t know which this feeling goes to my neck and left side of my face, the first time I had these symptoms I thought I was taking a heart attack or a stroke and I get very anxious and panic. I asked my neurologist about these symptoms and he said it’s Dystonia (which I get regularly in my left leg and it’s very painful) the muscles tighten up like cramp but I have to say that this is the most frightening thing I’ve experienced, when this happens I take a rescue (Madopar 25/12.5mg I am allowed three per day) and maybe within around fifteen minutes I’m back “on” this only happens when I’m “off” also I’m allowed a Baclofen 10mg to loosen the muscles if the symptoms are really bad. I also have thought I’m going to die and my husband has to talk me through the panic/anxiety, I also feel my head being pulled back and my breathing gets very difficult.
I’m sorry you’re experiencing these horrible symptoms and I hope that you find some comfort in the fact that I too have the same symptoms (you’re not alone) I would say that just because I was told it was Dystonia doesn’t mean that yours may be but as soon as I read your story I associated with you. I hope this helps you in some way knowing that I know what you are going through and it really is debilitating. You should perhaps ask your care provider about this and they will review your meds….please let me know how you get on and if you need any more advice please ask. Take care
Kind Regards
Janny
PS I am to be fitted with the new pump (Produodopa) which delivers medication twenty four hours a day. I’m praying it works for me. You could google this for any info.
When my meds work I could conquer the worldhi, I'm fitted with pump five months now. It's given great freedom but few problems as well
Hi there - my husband has PD and I have found 1,000 ug of Vitamin B12 has helped him no end - I do believe the drugs for PD can deplete B12 which is so important for the nervous system neuro issues.
Hi,
I was having a look through the various items + problems we all seem to have to somehow learn to live with which is part of coping with this horrible disease.
I feel our whole household is ruled by Mr Parkinson, no matter how I try to rise above it or when I have any other health problem, Parkinson’s doesn’t like being pushed aside, is my way of trying to explain to friends who can never understand how we feel.
I used to have similar “offs” to you, I have had PD for 24 years since diagnosis + 2 years prior to this when no one could determine my symptoms!! I live in Scotland & my GP apologised to me after I eventually saw a neurologist & was told my diagnosis, my GP realised he’d missed several of the symptom!!
My “switch offs” have changed since I was started on Apomorphine, now 7 years ago, at first I used to self inject with an Apogo pen, unfortunately there was a problem during Covid, I had to wait almost 2 years longer to transfer onto a medication pump. I’m not sure if you have heard of this drug but my PD has never settled or significantly improved since I was put on it. Perhaps my expectations were too high as I was so fed up having similar “offs” as those you describe.
I also changed consultant around the time I started the Apomorphine & I have never felt i had the same trust or empathy with her. I’m now repeatedly told “I’m a conundrum or “an anomaly” as I have very complex PD.
I don’t have them all the time though they are becoming more frequent again, I feel so ill, every ounce of energy drains out of me & as almost my whole body is trapped, being contorted with dystonia, it is unbelievably painful then to crown it all I have an overwhelming sense of panic which engulfs me, I feel so scared. I dread these “offs” as they last such a long time, my husband & daughter feel helpless as there is virtually nothing they can do to ease my distress. My body is consumed with feeling tight, my feet are cold & numb. I absolutely dread these episodes.
My specialist PD nurse once asked me to describe this mounting feeling, she told me other patients had described it as a crescendo which is exactly what I felt was happening to me. It feels interminable. The relief as eventually the medication finally kicks in + the intense tension subsides is such a relief.
These episodes leave me completely wiped out. It’s very difficult to explain to family or the nurses / medics the intensity of these off periods, they make an already problematic life even more so.
As Janny commented earlier the “offs” are occurring as the longer I take the medication the less effective it becomes. I try to stay in good spirits but it is hard though I do count myself lucky that I have had longer than I expected when I was told my diagnosis. I try to count the good days & not dwell on the past harder ones. You are definitely not alone, I so wish all the clever people working so hard on research could find the key to unlock this horrible live altering + limiting disease.
Sorry for the lengthy response.
Chris
