Dystonia Society

Balance - the good old days

Age 58 in February 2008 when walking I felt as if the pavement was going up and down, similar to being on the ferry. I sat down. No other symptoms such as spinning head etc. When I got up my balance was unsteady. Hospital visit revealed blood pressure nothing else. Despite daily BP medication, ear tests, brain scans, situation worsened over years. Now diagnosed with functional Dystonia. No tremors or other problems save constant bach & neck rigidity. Neurogical test good! Life is a mystery. Neurologist recommended Zoloft Serotonin) which calms emotions but does nothing for balance issue. Have started daily routine Ti Chi in morning and stretching routine evening. The only place where I feel normal is in bed. Also I sleep deeply and wake late. Getting upright is a daily challenge and standing from sitting an act of courage. Some days just simply bad and others impossible. I have asked two Neurologists and numerous doctors "have you ever had a patient with these symptoms?". Vague answers.

2 Replies

Hi and welcome to our little band.

Sorry to hear that things are such a struggle for you at the moment but heartened that you are managing to do some exercise... tai chi is supposed to be good for balance so here's hoping that it helps you.

All the best



Hi I have cervical dystonia and have had balance/dizziness issues too. I have tried explaining to my neurologist- that when sitting I feel my body is moving like the flow of the sea-as if I standing in waist height water and I'm being pushed to and for with the tide. I've been sent to ENT and I had an Epley manoeuvre which helped the first time-didn't have any symptoms for about 3 years-but symptoms are back now and I'm waiting for another appt.

I understand about the neurologists' feedback or lack of it-when I described my symptoms there was always a denial that it is linked to dystonia-that's why they sent me to ENT-but everyone knows there own body-and the dizziness only started with my dystonia. I think Tai Chi is a brilliant idea!!! Go for it!! Best wishes


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