Hello,

My name is Elizabeth, I am a 70 year old retired nurse from Cambridge, England. 

In November 2004, my husband and I flew to Palma, Majorca; from there, we cruised to Brazil for 2 weeks making several stops en - route.  While in Brazil, we had some internal flights including to Manous in the Amazon; our stay there included several boat trips on the rivers before flying to the Iguassu Falls on the Argentine, Paraguay border.  After a hair raising boat ride to the falls, we returned by air to England.  After four fairly normal days, I was lunching out with a friend when I wandered out into the road without realizing it.  During the meal, I had trouble feeding myself and could not read the menu.  I managed to drive home but have lost the confidence to drive since then; from that time on, I have felt the floor moving beneath me as if I was on a trampoline.  I also bumped into doorways, swayed when sitting and when standing.  I had to constantly move to keep some sort of balance, I felt nauseated and had a right temporal headache.  

My doctor suggested Serc then Stemetil, no help, then Stugeron also not helping.  I was then referred to an ENT consultant privately who diagnosed Vestibular Neuronitis and who told me it would clear up in 6 weeks (I had then had it for two and a half months). After 5-6 months, I had vestibular rehabilitation and was told by the technician they could not help. I eventually had a phone call from the technician who had spoken to the consultant to say I may have that `Barc` thing with no further support offered.  My husband searched the internet and found MdDS. I cried with relief when I read the letters with all the same symptoms after thinking I had a brain tumour, Parkinson's disease, or MS.  I then contacted Jane Houghton who told me of consultants in England who may be able to help, and I rang Mr. Tim Mitchell in Southampton, who saw me privately within 2 days and confirmed it was indeed MdDS.

I have tried all the usual exercises and have even been in a decompression tank at the MS centre several times a week and eventually stopped after about a year - it made no difference.  I know one man in my area with it. Otherwise, apart from the internet, I feel totally isolated.  My doctor is kind and sympathetic but can offer nothing.  Now two & half years on, I take Prozac to help the utter misery of it all and Loprazalam (0.5 mg) at night to keep the bed still enough to get some sleep.  My main pleasure is riding in a car, plane or boat where it is disguised, also walking in wide open spaces on bright sunny days, also, I find I can stand on one leg in reasonable comfort when I get out of a car or out of bed, but the moment both feet reach the floor, the bouncing starts again.  The constant fatigue drives me mad.

Busy patterns, people close to me (mainly in supermarkets), any infections, miserable dull days (who can avoid them in the UK), tiredness, and stress all make it worse.  I find writing difficult.  I tend to go off the edge of the paper and after trying to read more than a few lines of a book or paper, the print is distorted.  The PC screen is a nightmare (which is why my husband will be doing this from my draft written over several weeks), sweeping or vacuuming the floor, rolling pastry, and any repetitive movements are hard.

I tip or fall forwards and sideways quite frequently, so I use a stick for walking but I can watch TV.

 What a life.