Orthostatic Tremor

I didn’t get the shots, I have a brain aneurysm, I wasn’t going to risk it. I’m happy I didn’t get the vaccine. But yes, that’s seems odd to say the least!

I’m sorry you’re going through it, I’m sorry for all of us dealing with it. It really does change your life as you knew it!

Good to know about the poles, Thank You! I think I’ll get some.

My doctor prescribed Clonazepan when I fell into a depression in the fall of 2018. The first week I took it, it seemed to help. Two weeks later and I was shaking and feeling unstable. I took it for 4 weeks and then stopped abruptly - bad idea. Worst addiction ever and that was for a very short period. The results were that lingering feeling of unsteadiness, not being able to do normal standing things like most people. I have been coping, but now my hands are shaking also. I did not know it was a tremor until this summer; I thought it had something to do with my balance and ears. I went to see a neurologist at the beginning of this month and he confirmed I have an Orthostatic tremor as well as an Essential tremor. I told him that this all started when I took Clonazepan, I did not have any tremors or signs of tremors before taking that drug. The neurologist said it might just be coincidence. I am now trying Gabapentin, but wow, I feel constantly high and sleepy.

Yes, I too was previously very active. And had been all my life.

Even after previous other severe medical problems I came back. to a more active status.

Not this time.

I have been diagnosed with orthostatic tremor also. I believe the first time I encountered a problem was seven years ago. Gradually the falls have been more frequent. I don’t have any trouble walking but I cannot stand on one leg or go up and down a curb without falling over, to the opposite side of my raised leg. I also have tremors or vibrations in my core when lying down, sometimes.

The doctors are very unaware that this problem even exists. I’ve read that this affects generally women over 60, so I’m not surprised it hasn’t been studied more. All the info I have gathered is from the internet and there is a lot of info out there. But so far no solutions except to try various drugs!

Hi,
Just wanted to know how you’re doing? You mentioned that your legs feel heavy, I to have experienced that. I have a lot of fatigue. I try to stand still which makes my lower back and hips hurt most of the time. I still haven’t given in to using a walker with a seat attached. But there are times I wish I had one for sure. I’m taking Mirapex the lowest dose 3 times a day. It has helped. I’m able to stand longer and my shakes are better. But of course it doesn’t last, but it does help. I’m just so sad that I can’t do the things I want to do. I’m sick of sitting all the time. I wish more doctors would realize we need help! Thanks for letting me vent once again. I hope you’re having a good day!

I have had orthostatic tremors over 7 years. I feel like my symptoms have become more disabling in the last year: the time I am able to stand has become shorter, I now have heaviness in my legs, muscle pain (hurting pain, not spasms) if on my feet too long, feel tremors/vibrations inside my body, especially at night. Doctors don’t seem real knowledgeable or concerned about symptoms, especially internal tremors. I hesitate to take drugs that will cause dizziness, and make me more susceptible to falling. Have any non-pharmaceutical remedies helped anyone?

When my legs started to have problems my husband and I called it a stump day. I was falling frequently. I saw several doctors and eventually was given AFO braces for my legs. There were other symptoms and my biggest help was an excellent physical therapist who worked with me for several years.

I also feel the vibrations at night, but just in my legs like restless leg I’m guessing. I need to keep moving to a different position. It has just started and it’s not every night thank god. There are days my legs feel very heavy too. I haven’t had any falls as of yet. I’ve had the full body tremors if I’m standing to long and can’t sit or lean on something. This disease really sucks the life out of me. I wish some doctors would work with us more and figure out what is causing it.

The longer I stand, the more I experience body tremors, as well as hand tremors. It also causes “pounding” heartbeats that I can feel, but my heat rate stays slow. My doctors can’t figure it out. I suspect my autonomic nervous system may be dysfunctional? I just started taking a cane with me, not for walking, but for something to steady me when I stand and there’s nothing to hold on to. Yes, this takes the joy out of life 😢 I also have chronic daily migraines, so every day is a challenge.