I am a 75; year old woman diagnosed with orthostatic tremor.

I noticed you said you have Vibrations. Are there internal where you swear your body is moving but it’s not ? Like it’s grinding to the trunk of your Body ? In 2 weeks I’ll have mine for 4 years and NO Doctor can tell me what it’s all about. I’m starting to think it’s some sort of Conspiracy Theory. From the 1st time these started and none of the Drs. Or diff Specialists could have any clue to as what it is. I’ve begged for anything to try. I’ve had a couple of Bi-Laterial nerve blocks and only 1 different d something stray. It’s lil embarrassing to explain. There has been 2 occasions where I had to have antibiotics at 1 time for Bronchitis and other was strong Steroids and Surgery related meds which those both times stopped my internal Vibrations for 5 weeks straight. 🤷‍♀️I’ve. No clue but this is maddening. It’s hard to function some days even to walk or talk. Feels like the ground is moving. It ranges from bottom of my feet to my bra line. It’s miserable living like this. It’s taken a toll on me and my family. I pray for anyone who has it. I just like for 1 Doctor to feel what I’m feeling for 1 min. Then he’d see what we’re all talking about. I’ve been through many tests and Scans. 1 Dr says it’s a Brain or Spinal issue but no pne can pinpoint it out. Keep goin after the Drs. Hopefully someone will have good news and please spread that if ya ever learn of it.
God Bless our Country 🇺🇸

I am a 70 female and have had OT for over 30 years. I basically diagnosed myself after much research, I brought my data to a neurologist, he reviewed and tested me. After a few MRI's to rule out other things, it was official - I am healthy otherwise and my tremors have not changed since the beginning. I do take medication, it helps a little but I mostly position my self so I am leaning, walking, or sitting......I hate standing in lines especially while traveling. I recently moved to the Jacksonville area and I am looking for a neurologist, I had the same one in another state for many years which I fly back to and see once a year until I can get one here. Facebook has a few OT groups and one has a roster of almost 1900 people in the world who have been diagnosed. all the best and keep walking!

@ocogram
I was looking for a forum about OT. I got this when I got Guillain-Barré syndrome almost 3 years ago. luckily I got to go to physical therapy for about a year which helped. I was given clonazepam, but it really doesn’t work for me. I am 75.

@alexa2020 I got OT almost 3 years ago when I had Guillain-Barré syndrome after a bad stomach virus. I didn’t know what it was at first I could walk, but when I stood in place it started when I get out of bed in the morning, I have it a little bit immediately until I start walking. When I stand to wash my hair in the utility room, I have to hold on. Luckily my neurologist diagnosed it about a year after I got it - he gave me clonazepam, but it really doesn’t work for me. Glad to find other people on here since so many people have no idea of what’s going on with me since they cant see tremor.

Yes- my neurologist diagnosed me. I got it along with guilian Barre after I got bad stomach virus almost 3 years ago. I had physical therapy for about a year and it helped. The GB left me with numbness needs to toes and the OT has stayed about the same. It is relieved by walking or sitting down.
I didn’t know what it was because I couldn’t see it, but I could feel it.
The doctor gave me clonazepam, but that did not really help so I’ve stopped that. I see him on Thursday for my six month checkup.

Hello There!
Try this link good information. https://youtu.be/i58rPitK5uw

It’s from 2019

Another medication mentioned: Perampanel is a medication used to treat orthostatic tremor (OT), a neurological disorder causing leg tremors when standing, which is often associated with dizziness and an increased risk of falling. While studies show perampanel can provide acute improvement in tremor symptoms, it has also been linked to poor tolerance due to side effects like dizziness and instability, with many patients experiencing a loss of therapeutic benefit over time.

Orthostatic Tremor is a rare, progressive movement disorder that causes unsteadiness when standing still, due to a rapid tremor affecting the legs and trunk. The tremor is sometimes described as having ‘shaky legs,’ and it improves or disappears when walking, sitting, or lying down. This may cause people with Orthostatic Tremor to attempt to sit again or walk immediately after standing, for fear of falling. People with OT also experience tiredness, physical exhaustion, muscle stiffness or weakness, and pain. The cause and cure of OT is unknown. (National Institute of Health)
I have been living with OT since 2021 after the second stent was added to my aneurysm in March. Diagnosed in December of 2022. Every time I stand up, I feel very unwell, a bit like severe jet lag. After a few seconds of standing up, my legs start to (invisibly) shake, like a violent shiver, and after about a minute, my feet and legs start to cramp, and my back starts to burn and sting as I try to hold myself up and try to stop the feeling that I am falling.
OT is a constant problem that affects my quality of life. If I stand more than two minutes, panic sets in and it feels like I’m going into a panic attack. The feelings subside the moment I sit down, but it leaves me feeling totally exhausted and depleted, and I need some time to recover. Orthostatic Tremor is a hidden disability, and it comes with varied emotional, mental and physical challenges for me.
Emotional challenges cause me to often face emotional ups and downs due to the daily struggles and frustrations I encounter. I experience feelings of frustration, isolation, and sadness, stemming from my condition. Coping with OT involves managing the stress of concealing my challenges from others, fearing judgement or misunderstanding.
I often feel frustrated, annoyed and upset when trying to do normal everyday activities, like showering, getting dressed, making the bed, cleaning, cooking, dishwashing, doing the laundry, shopping, standing in queues, talking to someone anywhere, having a photo taken, taking a photo, trying to cross the road, walking slowly, help-your-self buffet meals, and even hugging someone can all prove difficult for me.
The challenges I face can make everyday tasks more demanding and that affects my confidence. I feel overwhelmed and sense a feeling of inadequacy when I struggle with tasks that others find easy.
Although my hidden disability may not be immediately apparent to others, it can still cause physical symptoms and limitations. I experience chronic pain, fatigue, and balance issues that impact my daily life and can significantly affect my physical wellbeing.
Living with OT I also face social challenges, as others may not understand the nature of my condition. I encounter skepticism, disbelief, or dismissive attitudes from those who cannot see my disability. This lack of acknowledgement can be emotionally and mentally draining for me, leading to feelings of isolation or being misunderstood. Because OT is invisible, it is hard for people to understand what is happening to me. I look ok, so those who are aware of the condition often forget I have it.
As time has progressed with my OT, I've become more sensitive to noise, lights, crowds and unfamiliar places, which cause me to feel extremely overwhelmed. It has changed my relationships with many friends and family, as often they do not understand the changes that are taking place in me. I find myself having to say "no" to events I want to be present at, yet I know how it will affect me, and how long it takes me to recover. OT often leaves me feeling anxious, frustrated and depleted, withdrawn, sad.
Symptoms are worse when I have poor sleep or I’ve overdone my level of activity, and pushed myself beyond my limits, and any kind of excitement can cause me sheer exhaustion. It just makes me hate my life living with this rotten disease!

@robina64 Essential Tremor. Not serious and common.

@champton hi, i have been having this feeling of like trembling inside and been to 3 neurologist and done many tests and blood labs and nobody knows, the latest is i did a Dopamine and catecholamine's test and it came back high this and the norepinephrine (adrenaline) will have an MRI on Dec 2 to see if i have any king of benign tumour on the adrenals, will see, will let you know