The Orthostatic Tremor Forum (archive)

Hi, I posted awhile back and have been back and forward to my doc ruling out various medical issues and now finally have him referring me to a neurologist. I am keen to get my head around OT before my appoint as I know is rare and misdiagnosed. From what I have read SOME of you are a bit older than me and have more severe symptoms. I am 33 and I tremor a lot - I lean to shower, hold the bench to cook and cling on to my hubby to talk to friends. Some of you fall over, iuse wheelchairs can't manage stairs?? Was this a progression? When did you notice your symptoms begin and how did they develop? Also my doc said OT was related to BP but mine has always been perfect. Have you heard of this correlation. I am hoping to start midwifery studies soon but I am uncertain of the future. My knees and ankles HURT with all this shaking how do you deal with that?? Ok I will sign off - a lot of questions and ranting. Thank you for all your input in this site.

Hello,
I was diagnosed at the age of 49 and I think it is quite common that OT shows up around the age of 50. But you are not the only one that is younger - I've even seen posts from a teenager..

If you read my diary (the golfnut story) you will see that my OT progressed too. Today I'm better again, but I sit in the shower and still lean on counters/something solid if I need to stand for a longer time.
According to my neurologist OT is not really correlated to anything, we just get it anyway.
Personally I think it can have something to do with emotional pressure/stress.. but that is my personal idea only.

Many of us use various epileptic-related drugs and get some relief. Gabapentin worked for me - but now I'm off medication which feels very good.

It is so very hard at first, but over time you learn to cope, find ways to manage and handle various situations. So hang in there, write your thoughts and questions here and I'm sure many of us will try to help as best we can.

best regards
the golfnut

Hello ems
I live in New Zealand too - just moved to Blenheim after living 11 years on the Chatham Islands. It's not a move made lightly as my husband continues to live and work on the Island, visiting me each time he comes to the Mainland for business - about monthly. I moved to Blenheim in the hope that the warmer and drier weather would help me cope with the pain in my legs, the Island being cold and damp in the winter. I don't want to rely on painkillers - can only really tolerate Panadol as everything else upsets my stomach. There is one other NZer on this forum - Didi from Wellington. I was diagnosed with OT in my mid-fifties, but I had been having symptoms for approximately four years prior to that - my legs having a jelly-like feeling and general clumsiness. I also noticed that I was losing strength in my hands. It was originally thought that my balance problems were coming from my ears, but after seeing an Otolaryngologist, he advised that I needed to see a Neurologist. The Otolaryngologist ordered an MRI on my brain which was normal (as all OTers seem to be). I saw Dr Johnathon Simcock in Auckland in June 2009 and after one hour with him he had diagnosed OT. He told me to continue walking, taking longer strides to help with balance. About 18 months later when I and those around me thought that I had deteriorated, Dr Simcock suggested that my GP prescribe clonazepam. I was not keen to take it because of the side effects, and have remained drug free apart from sometimes taking Panadol at night. I retired from work over 12 months ago as I found tiredness made my symptoms worse - I am lucky in that we did not have to rely on my income for living expenses. Like Golfnut, I have learnt to cope with the effects and carry on as normal as possible. I did use a walking stick when out in public up until June last year when we went on holiday to USA. I found with the warmer weather and my husband's arm for occasional grabbing, I was better without it. I haven't used it since, but do still look for a "leaner" when required. When I'm tired and forget to take longer strides I still tend to head towards the wall for guidance, but once I think about what I'm doing I'm OK again. Good luck with your appointment, and feel free to email me privately if you would like some extra support from a fellow NZer.
Regards, Lynette

Thanks Lynette and Golfnut I appreciate your replys. Sounds like you both are getting on as much as you can. You have given me a clearer picture of what to expect