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
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
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!).
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
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?
Hello Everyone, I have had OT for about 6 years or so and it is getting worse as I age, I am 71 now. My neurologist has place me on Gralise 1,800 mg with my dinner meal and Klonopin 0.5 mg 3-4 times daily
I reside in South Carolina and have a question if High Heat and Humidity can afftect the OT? Also, I do have a martini and glass of wine with dinner and how much does that take away from the effectiveness of the drugs and OT condition? Thank you Jim, 07/21/19
By Stel
I have had this disease for over 20 years.
Now for the first time for 3 mornings I have found shaking all over.
It is the worst feeling.
Only thing is it didn’t stop when I sat down.
When to the hospital doctor said everything seems normal.
So after about an hours it just all stopped.
Anyone had anything like this
By Stel
I have ot now for over 20 years..
Seems to be getting much worse.
I live in Canada.
I am 81 years old.
I have Ben having some sort of seizures in the morning behemoth I get up.
It’s like the tremors go all through me. It is the worst feeling.
However it does not stop when I sit?
Lasts for about an hour.
Went to the hospital everything fine.
Makes me so nervous of getting bout of bed in the morning
Seeing my neurologist soon.
Has anyone had this happen.
Hi everyone
I have just joined although I have had OT for about 10 years now. I diagnosed myself by googling “ shaky legs whilst standing “ and although my doctor had never heard of it he sent me to a neurologist who confirmed it and told me that I was the first person he’d diagnosed ( I told him at the outset what I suspected)
I was in a bit of shock as ( apart from vertigo ) I’d been well. I was aged 57 at this point .
It progressed and I started to take Clonazapam which helped.
I’m from the UK and my OT has really progressed. I find it quite restrictive around the house. I’ve always been a walker and still walk but less now ( maximum of 5 miles ) I must step it out though. Slow walking is as bad as trying to stand.
I’m hoping it doesn’t get any worse. I find that if I get a bad cold that makes it worse. I first noticed it after getting a bad cold .
Nice to “ meet “ you all.
Hi I am Sherry and from Oklahoma. I have suffered from OT for over 15 yrs before being diagnosed About 5 yrs ago. I have felt so alone with this until the past two weeks!!! Finally I feel I have found a family that understands me!!! Thank you for being here!!!
By Betty
Hello to all:

I was checking the website and found all of you today; I wish I had checked sooner and could address each of you, but I will start at the bottom with Trish. You wrote:

I was diagnosed by my neurologist yesterday. I’m reading up on OT. Any comments on how to tell your family about your diagnosis would be appreciated.

I have had OT for 25 years, and feel the best way to tell your family (or anyone else) is just tell them what you know about OT. You can also suggest they check out this website and they will find so much information which will be helpful.

Try to stay positive; attitude is everything! One must learn different ways of coping; we all do, and you will too.

Good luck,
By Betty
Hi Sherry,

As you probably read in my blog to Trish, I have had OT for 25 years and know how you feel ~ so alone at times. But....this website is GREAT for making one feel better. We have all experienced what you have/are experiencing and will be as helpful as we can.

If you have questions, just ask and someone may have an answer for you.

Good luck and stay positive!

By Salnor
Hi! I was diagnosed with OT there weeks ago, and have been suffering from it for five years mostly in church and at gravesite ceremonies. Very hard to stand. I was given Primidone by my neurologist. I had to cut it down from one tablet to 1/4. I was like a walking zombie and slept way to much. I stood in line at TJ Maxx and just shifted from foot to foot and moved around and was able to get through. It’s tough for sure! Sally, age 60
It truly is an annoying condition. I have had it for three years. I suggest a "Rollator Walker" - a walker with four wheels, hand brakes, a seat, and a pocket under the seat. There are other accessories available to attach if more carry space is needed. I suggest this because the hand holds are better for balance and the seat is more sturdy and larger. I have used one for two years and cannot do without it. I bought it online from Amazon. The price was much less than purchasing it from a medical supply store or even a large-chain pharmacy such as CVS or Rite Aid. At first I was self-conscious but I have grown to know that I really don't care what others think about my using this equipment. I refuse to let anyone, either in theatres or restaurants move it from my immediate use. I have started to use it in grocery stores by placing their small hand-held basket right on the seat of the rollator. (Sometimes I have to temporarily remove the backrest of the rollator, hanging it sideways on the seat to make the basket fit. I do this because when I have to sit down, I have to sit down immediately or fall. When that happens, I just take the small basket off and put in on the floor. Never be afraid to ask for help. Most people are considerate and helpful.) Good luck.
By Divine
I am Catherine from Missouri. Thank you for admitting me. I am 62 with wobbly-vibrating knees and then legs for about 18 years. First I had to change to flat shoes. Then I installed grips in the shower, clung to counters and chair backs, etc., you know the drill. Thought I had a balance problem and tried a cane. It only made me feel like a social leper. Stopped going to museums and on tours and forget trying to date. My first visit to a neurologist is a month from now. Mom had benign essential tremor. I'm very easily exhausted and heat intolerant. How about you?
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