This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

By Donna436
#6268
I am not sure I am actually in this forum, but here goes. My name is Donna and I live in California in the USA. I have had orthostatic tremor since 2001 and was misdiagnosed for 19 years. I was diagnosed correctly at the University of California in San Francisco (UCSF) in February 2019. My symptoms began gradually with leaning against walls and chairs and touching things to stand, but have progressed more in the last two years. I am now 77 years old. I walk 4-5 miles daily and am very active, but I cannot stand for more than a few minutes. I work with students nearby at Stanford University (another place I was misdiagnosed) and this is often interfering with activities now. I used to enjoy museums, but now I look at the museum website. Then I go in, go quickly from one thing to another to see the things that are special (sitting occasionally) and then leave. I call it my 30 Minute Museum. But I used to love to read everything in a museum and look at art for long times, and that is over now. I am happy to join a discussion about how to make life easier to navigate and how to explain a condition that often has no visible symptoms. Thanks
#6269
I not taking this medication but my doctor told me that any anti-seizure medication needs to start gradually and stop very very gradually to avoid side effects. So if you are on this med as a trial, please check with your doctor before suddenly stop taking it.
Penny Scudamore wrote: Wed Jun 26, 2019 10:01 am Hi, my name is Penny and I live in Bristol, England. I've had symptoms for years, and there are very few physicians here who know about OT, so I spent a long time being investigated (obviously without any successful diagnosis) for all sorts of diseases and began to think I was some sort of hypochondriac. When I suddenly came across all the info about OT on the internet, I felt all my Christmases had come at once! I went to my doctor, who hadn't heard of it but agreed instantly that all my symptoms were accounted for, and is trying to find a specialist who may be able to supervise some medication. I am pharmacy-trained so she was prepared to give me some gabapentin to trial. Can anyone out there tell me if this or any other medication can be taken on an as required basis, or do I need to take it constantly? I'm retired so I don't necessarily need to be symptom-free every day (I've lived with this so long that I can just put up with it if not in public!).
#6272
Orthostatic Tremor

Today is December 20th 2018 and I thought I would start to document my experience with Orthostatic Tremors…I have found this website and thought posting my thoughts may be of help or you might just get a kick out of what I have been through so far….
I will be 73 years old next month and am in pretty good shape, thank God, except for the OT…
The best I can recall it all started about 5 years ago…I was still working at a sit down desk job across a busy street from McDonalds where I often went for lunch…One day on my way back with my lunch I fell in the middle of the street an my lunch went flying all over the street….I quickly gathered up my stuff as I saw cars speeding my way…I had been having OT symptoms prier to this incident but I didn’t know what was wrong with me, so after my fall I thought this would be a good time to go to my doctor for a check up…I explained my systems to him and showed him my tremors while standing and the uneasiness of standing still… He then put me though some basic tests (walking up and down the isle etc…)….Questions about family history (which my mother who lived to 98 ½ with Parkinson’s) but could find no solution to my problem… He suggested an MRI which my insurance company wouldn’t pay for until I went through Physical Therapy first…At PT I told them about my systems and got blank looks on their faces… I told them I called it the “tripod effect” where if I had something to lean on like having a third arm or leg I was just fine… more blank looks… So I did my PT and, as you know, they didn’t find anything wrong with me and recommended an MRI….I had the MRI and they found some things wrong with my back and I had some back surgery done…. I felt pretty good until the meds wore off ….I did have to admit that my back did feel a little better, however the OT was still there…So I was sent to a Neurologist and after explaining my systems and going through the same kind of tests he admitted that he had never seen this kind of problem before…(Now these were good top notch doctors)…so I went home thinking I would just have to suck it up and live with it….
A year or so went by and I start to notice that I couldn’t stand in the shower for fear of falling, standing in line at a restaurant or at the supermarket (killer) or any standing in place would activate the tremors…. More time went by and I decided to try another Neurologist… This guy said he had never seen anything like this, however he had a college 10 years ago who had a patient with these systems…so he opened his laptop and googled his colleges name wherein Orthostatic Tremors popped up….He then goolged OT and wala there I was….The article also said they were having some success treating OT with a couple drugs…He put me on Gabapentin 300 MG 3 times a day….I saw no relief ….So they added Primidone 50 MG twice a day…BAM ! …tremors cut in half….However, standing unsupported is still a big problem with prolong standing supported or not and the meds made me drowsy and clumsy, so I stopped taking the Gabapentin and the tremors didn‘t change, better or worse …
I could go on about how I deal with OT and how other people look at me, but I have bored you enough so I’ll close for now…. Thanks for letting me vent to those who understand and can relate…. If you want someone to compare notes with bring it on….

Donald R. Witt
donolanterns@hotmail.com
#6285
Hi Patricia Diamond writing from Boston. I was diagnosed with OT 4 years ago; had had symptoms since about 7 years ago. EMS was used to confirm my Dx. Three years of drugs (Clonazepam, then Gabapentin) have not helped at all. I have recently been diagnosed with Essential Tremors, so am a very shaky lady.
I am contemplating Deep Brain Stimulation. Since OT is so rare it is hard to research this.
Does anyone have recent knowledge of this?
Thanks
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