The Orthostatic Tremor Forum (archive)

Hi there,
I am a 39 year old South Afrcan male. I started experiencing OT about a year ago. I did not know what it was untill it became unbearable. I did a bit of searching on the internet and finally manage to put a name to my ailment. (which is how I ended up here) My problem is that I live in a small coastal town which does not have a resident Neurologist. I am still trying to locate one which is not fully booked - the closest Neurologist is booked up for 3 months!! In the meantime, I have discovered that a double whiskey is helping me get through the day (only lasts 4 hours and the tremors return) This is the only way I can get to do basic things like standing in line at the shops, standing to iron and standing in the kitchen to cook. I know it's not ideal, but it will have to untill I can see a Neurologist. Any advice as to how I can cope at work? (obviously can't have shot of scotch at work...) I try doing everyting sitting on a stool or leaning against something. I run the sign manufacturing department of an advertising agency. Most of the work I do requires standing and absolute accuracy. I am really struggling to cope though.

Does anyone else get panic attacks when going shopping where you know you are going to have to stand in a que? My entire body starts to shake violently and my heart feels like it is pounding out of my chest. Even my jaw clenches when I try to speak. This all disapears as soon as I leave the shop. There have been times when I've simply had put my shopping basket down and leave the store. I have the same problem at work. Since I broke my hip falling from scaffolding, I've had a mild fear of heights. Lately, this has increased dramatically. If I stand on a ladder, my boddy shakes so bad, I have sit down on the ladder and calm myself down. Is any of this related to OT? Anyone have any advice?

Kind Regards
Ian

Dear Ian,

Welcome to the forum. It is a great way to express ourselves with people who have had similar experiences.
Unfortunately the medicines for OT did not help me and only made the symptoms worse. I am on lorazepam which is usually prescribed for anxiety and muscle relaxation. I have not had anxiety attacks but evidently when one is rushing or in certain situations an adrenalin rush can make tremors worse. I only take a small amount of lorazepam in the early morning and do not want to take it more than once a day. Alcohol is not recommended to take with lorazepam. I have noticed early evening a glass of wine also helps to calm the tremors somewhat instead of taking more lorazepam.
It sounds like people have to try different drugs to find the one that works. Sometimes if I am trying to shop I have noticed ibruprofen helps a "little bit". Anything to keep from jumping all over the place. Good luck with your search.

Hi Tan,

Welcome to the Forum! I've had OT for 33 years--unbelievable!--and am still struggling to find ways to cope. But I'm certainly doing a whole lot better than when it all started. Like you, I often have extreme shakiness when I have to stand in a line--or on a ladder--or walk in the dark--or walk into a very crowded room. What has helped me are the ability to tell someone I'm having a hard time- -(that took years to accomplish)--and gabapentin. The medication sort of "takes the edge off" both the unsteadiness and the anxiety. I know that while the tremor doesn't go away, fear, stress, fatigue, etc. contribute and can make it much worse. It's been a constant challenge to me to find ways to deal with the OT and I've tried many many things--biofeedback, physical therapy, cranial sacral theray, different medications--you name it! I think everything helped a little although nothing helped dramatically.

Having a job that requires standing is certainly a problem. Is there any kind of stool that would give you adequate support while allowing you to do your work with the precision you need?

All good wishes, Harriet

Hi Ian,
Interesting to note you have just joined this forum which I have found one week later. (I am 41 and live in Australia)
With my neurologist I have just come back to the line of thinking that I suffer from an orthostatic tremor (and establishing effective medication) after quite a few years of specialist care eliminating other possible causes for my tremor. I understand your frustration with waiting times for appointments.
I have periods of relatively good 'health' and others where I am considerably debilitated. Sometimes standing for a single minute is an impossibility or a major achievement while at other times I am 'normal' and can stand and 'have a chat'.
I find it totally unbelievable when friends say they didn't realize I had a problem when I think my shakes are always so obvious - I have become very good at finding a seat or leaning post quickly though! I would find it impossible to even think about climbing a ladder.. I even hate not being against the side of a lift or being able to touch the rail of an escalator in a shopping centre.
Convincing myself to keep going, that I will be fine is not always easy... but a positive state of mind helps so much (even though I know this is definitely not a 'state of mind' problem).
Hope we will both be successful in achieving some significant relief from this problem.
Warm Regards,
Jill