The Orthostatic Tremor Forum (archive)

I find in recent months I am finding it increasingly difficult to balance. This is at age 75 after 20 years of OST. Any ideas on what can help please.

Dear cmdrmarsh: Your question that you posted is as you know, a problem that we OT people have as part of our syndrome. Most rehab centers generally have therapist who have certain exercises that help with balance problems. I personally have found that walking at a nice pace helps me with balance. It seems to work the leg muscles in a normal way which does not happen for us because of the OT communication failure to our legs. Perhaps some of our OT friends have tried certain physical therapy programs that have given them some relief. Gloria

Hello Everyone,
My questions I would like to ask you to all please think about and respond to are:-

• Do any of you have a problem with balance when walking in the dark or any other time?
  
  I also would like to know if you are walking slowly, does this
  cause the tremor to come eventhough you are movng?
  
  What about walking down stairs do you get the tremor then?
  
  Is walking up stairs easier?
  
  If you stand still and the tremor starts and then you begin to walk is your gait normal or, does it take a few steps or so to be normal?
  
  Do any of you experience back pain that is severe by the end of the day.
  
  Do any of you wake in the morning with severe back pain especially after the previous day has been a day where you have been standing a great deal?
  
  When you have been driving if you have your foot on the accelerator for a while do you experience tremor and maybe (clonus) of that leg?
  
  What has been the benefit of taking Neurontin? What benefit have the different types of benzos. been?
  
  Any other medications that have helped?
  
  Has anyone had investigations such as MRI's, EEG's or Cat scans on the spine and/or brain?
  
  Have you had Nerve conduction tests on the legs to measure the tremor.
  
  What aids do you think would help you to perform your duties in the variety of workplaces that we as a group have. Please feel free to suggest whatever you would want in a perfect world that would enable you to continue your work normally.

Thanks so much for being open to reading this and I do hope you find the time to respond.

I am asking these questions just to see if we can make some sense of this OT and work out a plan of action that will help us to understand and maybe make this condition a little more bearable. I recognize that OT is different for each of us but I am trying to put together the symptoms we have in common and the solutions that many of you have discovered in order to cope with OT. (Yes, I know its presumptuous of me.) I will be showing this to my new neurologist who is willing to read what you all say.(In short form)

A big thankyou to you all for sharing your experiences in your postings.I have been feeling rather down about having this condition and it is really great to have this website to be able to read about you and be inspired by you. I have been finding it so hard to explain how a little thing like OT can affect so much of my daily activities.
Thank you all so much

Dear cmdrmarsh,
How rude of me! I meant to answer your post first. But got carried away with my questions. I too find balance a problem and went for physio help but unfortunately my therapist thought if I stood on a mini-trampoline I would strenghten my muscles in trying to balance. What a disaster! It shows how hard it is to understand our condition.
I think amongst Glorias research papers there is a paper about how OT affects our perception of where we are spatially. If I remember correctly this perception is something we cannot consciously control. (Check that)
I dont have an answer about what to do about the problem but you are not alone. I find that if I rest my legs before I have to do something which requires extra agility I seem to manage a little better.
I do walk a lot to maintain muscular strength but have come to the realization that no matter how strong we make our muscles we cannot prevent the tremor. (My neurologist agrees) In fact he even cracked a smile!
I found I had to clear the rooms a bit as I am a "clutterer" I did this because its easier to get around the house. If I am in the dark my balance is dreadful! Hope you are allright otherwise.

P.S.What a coincidence my sons new life partner from England was talking about how beautiful Bath is only 2 days ago! I think she misses the cold christmas time.

To answer just some of your questions:
I do have a problem walking in the dark. If I have to get up to the bathroom in the night, I lurch from one item of furniture to the next! My balance seems to be even worse than normal.
I have great difficulty walking slowly, especially in a crowded place where I can see no way of escape. My tremor is certainly in evidence.
I cannot walk down stairs without a handrail. Walking up stairs is easier.
If I've had to stand for any length of time, I do have difficulty in starting to walk again normally. I think I spoke about this in a previous posting ('Overuse of leg muscles to prevent falling').
I have no problems with back pain or when driving.
I have taken Neurontin in the past without much effect - but I know that it does help some people.
Hope these answers are of some use to you.
All the best
Lynda

Thankyou Lynda for your response. I am trying to put things about OT together by the 4th Feb.when I next see the Neurologist. It is nice of you to take the time to inform me about your symptoms. I must try to make my messages shorter as they are rather long eh? But, I write like I talk and my friends often say I could talk under water.

Thankyou Lynda for your response. I am trying to put things about OT together by the 4th Feb.when I next see the Neurologist. It is nice of you to take the time to inform me about your symptoms. I must try to make my messages shorter as they are rather long eh? But, I write like I talk and my friends often say I could talk under water.

I had balance problem before i was in Neurontin for 2 years. Now that I am in Epilim is much better my balance. you may ask your new dr for this tablet i feel much better is not 100% but help!! (Or may be what is good for me is not good for you but you can ask??) My ET gives me more problems lately, Love Porotin

I live in Oklahoma and have been diagnosed for about two years. I am treated at the Baylor Medical Center Movement Disorders Clinic in Houston by neurologist Dr. Jankovic. I make the trip every six months for re-evaluation. Walking or even standing in the dark is very scary and difficult. Vision obviously plays a role in my balance. I am an antique dealer and I shop alot in confined aisles of a shop or flea market and I often find myself shaking when moving slowly, especially leaning forward to look at something closer. I am careful on stairs, but don't have any shaking, just a little unsteady. After standing and the tremor begins, it takes a few steps before my gait feels normal. I also experience stiffness in tight areas and after sitting for a long time. Getting out of the car with my hands full is difficult also. I have back pain from a herniated disk, but I have days when my legs ache horribly-a heating pad feels good when I go to bed and I take Excedrin with a little relief. I take Klonopin , benzo, but only one a day in the morning. I had severe side effects when I took it in the afternoon as well. I was sleepy and had terrible night terrors. Now I also take Neurontin- four pills a day. The dr. wanted me to take six, but I felt way too drowsy and had cloudy memory. I still have poblems and really have to concentrate sometimes to do what used to be easy. The combination of these two drugs has helped me stand longer in social situations. Ihave good days and bad with the tremors. Any stress, physical or emotional makes them worse. I had 4 MRI's from my neck down before I went to Houston. I hope this helps and good luck to you, Maggie

Dear Maggie, Thank you for your valuable information about your symptoms and drugs you take for the OT. I am in same position as you about the neurontin I can manage 3 x 300mg a day but find when I increase as the doctor suggested I cannot function. I can imagine it is difficult for you to browse through the shops you need to go through as you look for items. Why do you think stress makes the tremor worse. I agree with you but wonder if your neurologist has given a reason why this happens. Is it a long way from Oklahoma to Euston? I know it is only early days for you and I hope you are managing ok. How do friends and family respond when you explain the OT. Nothing personal, just wondering if its negative or positive responses that you get. Thanks again Hope you are ok there, I have seen the news and it was about the big freeze in America but dont know whether it is your area. I bought a little light that is light sensitive that plugs into the outlet and is off when there is light and comes on automatically when it is dark. Not very bright but enough to see around the room.

Hi
Sorry I haven't anwered sooner. I have been having some very off days with some problems with my back(sciatica) - which I have never had before so have been taking it easy for awhile.
I am a bit wobbly in the dark especially getting up at night and usually hold on to things if possible.
I find slow walking very hard to do and painful on my legs. This is especially true when grocery shopping even holding on to a cart. If I have to stand to do things with my hands with no support I find it very difficult. I am starting to hate shopping which I used to love all the time.
I am quite unsteady going downstairs - I always hold the handrail and if I am carrying somethings really take my time. When my latest grandchild was very tiny I would not ever carry him down the stairs.
Going upstairs is fine - no problems at all!
When I have been standing awhile it usually takes a few steps to walk normally ( sometimes with a bit of pain). If I can walk fairly quickly it helps a lot to make me feel better.
I have not experienced much back pain except for lately. My family doctor thinks this is unrelated to my OT. I do wake up most mornings with some sort of leg pain which usually goes away as I get active. The interesting things is our outdoor hot tub (spa) which I used to really enjoy no longer helps my aches and pains as much anymore.
My work (standing all day) has become much harder and now have to sit a lot more.
I am now taking Gabapentin and Clonasapam everyday and am slowing getting used to the effects. I have been off work this week to stabilize the effects and am already not as drowsy after taking them. The pain in my leg (sciatic) is gone again but my lower legs still hurt as usual after doing any standing or work aroung the house..
My doctor is booking me for a CT Scan of my back and possibly an MTI (which I don't really Like) but with our medical backups it will be awhile before I get these tests. I will probably see my Balance specialist again later on if things don't improve. My family doctor seems to be on my wave length now and understanding more of my problem. He is new to me as my old one retired last year.
Good luck with you new doctor. Hopefully he will be able to understand your problems and answer some of your questions.
Please keep in touch!
Chris

Hi again
I really should preview my submissions. I am a terrible typist. Further down it should read I am waiting for an MRI on my back not MTI as I wrote. I have had a CT Scan and MRI on my brain and everything was normal except for some nonspecific findings in one area which my doctor said was alright. (whatever!)
Hope this helps a bit and good luck again!
Chris

My symptoms are virtually the same as described ie, not feeling safe walking down stairs but okay going up, the difficulty with darkness the same as mentioned, a sort of swaying motion, having to hold onto anything available. When standing in one position for any length of time having to shuffle back into a walking position. Confined spaces ie, markets etc, very difficult. Exrteme back pain, especially when over done it the day before. But I do find that if I persevere in shops it can become, sometimes a little easier.
If there is one thing I could ask for with OT it would be for our complaint to be more recognised or known about by the general public as I personally do not know any other person other than you lovely people on this site that has OT. When at social gatherings I try to explain why I have to sit, the understanding never last more than the time it takes to fetch another drink!! I don't ask for sympathy just a little help sometimes, I don't think even my family really understand because as we have said before we look so well. Hope this helps.