The Orthostatic Tremor Forum (archive)

Hi everyone I apologise for not having been so involved on the forum over the last year or so, as I used to be. As a family we have been through a very tough time and, I am sad to say, my husband Rich passed away last Wednesday (aged 51) after a year's battle with a rare form of cancer of the append...

Hi! Welcome to the forum. I am so sorry you are plagued with this thing too - but you have come to the right place! We are all in it together and it is such a comfort to be able to share experiences, problems and solutions. Your story is very similar to my own (I seem to keep saying that to people o...

A week or so ago Dave posted a comment about having to put furniture together whilst kneeling - and it made me wonder whether I am the only one who is unable to kneel as well as stand. If I try to kneel it is not long before my knees start to shake uncontrollably. Also, if I put weight onto my arms ...

Hi Patty Yes - I always have the sensation that I am falling forward when standing still, which is made much worse in the dark or when my eyes are shut. I always stand back a little when waiting to cross the road as I'm afraid that I might fall into the traffic - and if someone stands too close to m...

Hi Patty Regarding your experience at the cinema, I have always noticed that when it is dark, my problems with walking, balancing and standing are exacerbated. I've no idea why this should be, but I believe that others experience this as well (I seem to remember from postings a little while ago.) I ...

Hi Lynne Welcome to the OT Forum. So sorry to hear that you have been diagnosed with OT - but you are amongst friends here! It really does make a difference to be able to label your condition and also to be able to share your experiences and questions with others who are going through the same thing...

Hi Mike On the swimming subject, I find that when I am in the pool it feels wonderful. My tremor barely affects me - a great feeling! However, on coming out of the water, my balance is twice as bad as normal and I stumble about hardly able to walk. On a holiday in Bali a few years ago I spent a lot ...

Hi Maria Welcome to the website! It never ceases to amaze me how similar all out OT stories are. It is such a comfort to know we are not alone. I do not suffer from claw toes (although my feet ache and ache after only standing for a very short time) - and only minimal backache - but apart from that,...

Hi Sue I first noticed the symptoms of OT after the birth of my first child when I was 29 years old - although I am now nearly 50. However it was only about 4 or 5 years ago that I eventually made a self-diagnosis from finding this website and then had it confirmed by a neurologist. Until then I had...

Hi Linzi (and everyone) Your experience in lifts and trains etc is so familiar - I can really sympathize. I had to travel across London on the underground recently - in the morning rush hour - and it was a nightmare. People were packed like sardines on the train and I had to cling onto a post for su...

Hi Harry This is great news and gives us all hope! It's so good to hear of somebody having a real breakthrough in their treatment of OT. I have looked on the Internet to find out a bit about Lyrica and I see that it is the drug Pregablin, used for epilepsy. I'm presuming, because of its name, that i...

Hi! Welcome to the OT site. I'm sorry the shoes didn't help you at all. I am still wearing mine regularly and - although they don't actually help the tremor itself - I do find a greater stability whilst standing which gives me that extra bit of confidence. I do hope you find other coping strategies ...

Hi Linzi Great to hear of a fellow OT sufferer in the UK - not that I'd wish this upon anybody! I live in West Sussex on the coast - so not so far away from you! You are very fortunate(!) that you have been diagnosed after only 18 months. I had POT undiagnosed for 15 years before I discovered Gloria...

Hi everyone When I first consulted my doctor regarding the tremor (years before I eventually discovered OT!) I mentioned to him the strong link between stress/adrenaline and the severity of the tremor. He actually sent me to an endocrinologist who carried out various blood tests etc to see if I was ...

Hi Welcome to the OT site. I can really relate to your problem about convincing your doctor that there is more to this than too much alcohol! I rarely drink (not very good for your trade I'm afraid!), but my doctor was convinced that anxiety was the cause of my tremor - and it took quite a lot to pe...