The Orthostatic Tremor Forum (archive)

Hello.

My name is Marla. I live in Seattle, Washington. Are there any other members here?

As far as I can figure out, I’ve had OT since at least 1993. As the symptoms got worse, I discussed them in 2000 with my internist. She had no idea what was wrong. A few years later, I saw a general neurologist who drew a blank too. In March, 2006, I read a newspaper column “Medical Edge: Ask the Mayo Clinic”. The article described the symptoms of OT and I knew immediately that I had found my diagnosis. I met with a neurologist who specializes in movement disorders. He confirmed that I have OT. I also occasionally have some mild essential tremors in my arms and hands. I briefly tried Gabapentin, but didn’t notice any positive change in the OT. The doctor said there were other medications available, but since some were beta blockers, they would interfere with some of my other medical problems.

I’ve been lurking on this website since my diagnosis. It is such a relief to find others who share some of my strange quirks, such as: looking for a wall to lean on if a chair isn’t available; being afraid to go down stairs without a handrail: dreading airline trips because of the long lines.

As my symptoms have worsened, I’ve become more comfortable telling people I have a neurological problem and that I need to sit down. I now request a specially accessible room in hotels. I carry a lightweight folding seat with me when I travel or attend events that might have limited seating. (It is like a folding camp seat. I find it steadier than a 3 legged folding cane).

I’ve been following the reports about the meeting at the Mayo Clinic with great interest and would like to see the video.

Hi Maria
I am your neighbour to the north in British Columbia. It was nice to read your post. I will definitely ask for a special hotel room next time I travel as I find the bathrooms very difficult in most hotels especially the showers. I too carry a folding chair with me when I attend events where I know there will be lots of standing involved....it is almost like a director's chair. It makes my life so much easier. My husband calls it my "wheelless wheelchair". Look forward to hearing more from you.
Chris

Hi Maria,
I am just across the border on British Columbia. As a matter of fact we are only 2 blocks from the border crossing. I also carry my stool with me everywhere now ( I am okay with the three legged one ) . I just plop down wherever I am and don't worry about what anyone thinks. A little hard to shop for dresses as you get your head stuck in the middle of the racks, anyway a lot of people think I'm stock taking. So welcome and if you cross the border do pop in for coffee.
Joan

Hi Marla,
My husband Todd has OT and we live in Lacey which is about 1 hour south of Seattle, he was diagnosed with OT last April by Dr Greely at Swedish Hspital, I am a LPN so I visit this site more then he does looking for the latest news and updates on OT. He also has problems with his inner ear with affect his balance, that's how his symptoms started almost 4 years ago and he was diagnosed with vestibular nerve damage in his right ear by ENT, he then started to develop tremors in his hands and was diagnosis with ET, by neurologist at UC Davis in California where we use to live, when we moved to the Olympia area we went to a new ENT, but my husband leg tremors really puzzled him and he sent us up to Seattle. It was so great to finally get a correct diagnosis, Dr Greely told my husband his was only the 4th case he has ever seen and he specializes in movement disorders, the neurologist we currently see in Olympia who has practiced for 30 years had only read about it in books Lucky myhusband was diagnosis within 2 years, medication does help the tremor he has had the best results from Xanax, he has tired low does of Neurontin but he seem to get more dizziness with that, he also has severe neck pain, that we are currently under treatment to make less severe, needless to say daily life is a struggle for him and he doesn'tleave our home very often. but if you were like to get together sometime that would be great I work Mon-Thur and I'm off every Friday we usually try to go out for breakfast or lunch, that's a day we have Dr appointment too but are clear the next few weeks. Thank you for your post and it's nice to know someone in the area has the same problems. Hope to hear from you soon.
Janie Stover

Hello, i live close by to you in Cinebar, WA and have OT...are you still on line with this group? have not seen any posts recently. Hope to hear from you.
Annalee