Eye related movement disorder

[Lake of the Woods]

Hi Jane,
Thank you so much for this update. I have summarized this and sent it off to my optometrist to ask his opinion on it.

I will advise what he thinks and please keep us posted on the forum how you are doing.

Sincerely
Peggy

[Janevece]

I spoke with Dr Padula last week.

He said he would be glad to discuss questions about my state and condition. In his opinion, there will probably not be a generic protocol to follow in treating OT. He suspects that each person has a different combination of factors that cause OT.
It is possible that there may be some common factor regarding visual processing, but that remains to be determined.

Visual processing dysfunction could be a key factor in the cause of OT as it seems to be with me. However, he needs to see other patients before a study can determine a component to the condition.

If a meeting were held in this area Dr.Padula said he could discuss his work with visual processing dysfunction, but could not talk about OT other than my experience because I am the only patient he has treated.

I really feel it is simple common sense to say that someone else will have to try this treatment to tell if it works for OT.

I continue to do well under most circumstances. Standing duration seems to fluctuate. I can always do activities like brushing my teeth etc without a problem, but standing chatting for example, has a limited duration of about 15 or 20 minutes, depending on the day. Other days, the duration is longer. For me, my core strengthening exercises really seems to help. When I don't do my exercises I am a little bit more shaky and tired. I also walk every day.
I have neglected to thank all the folks who wished me well. Bless you all. Thank you so much.

Still chilly here but spring is in the air.

Thanks
Jane Vece

[golfnut]

This is so interesting! Again, the brain works in mysterious ways..
I'm so happy to hear that glasses can help. Please do continue to write about your situation, keep us posted. It inspires!

Warm greetings
the golfnut

[gloria]

Jane:

I have been following your experience closely. There is one common factor of visual processing I have and many of our other OT friends report as part of their OT symptom. That is the threat of going down stairs without banisters or down a pitching slope. Have you experienced anything similar to this and has your new therapy helped with this sensation?

I would also like to hear again from OT people that do have this experience and those that do not ? Gloria

[LMP1]

Hello Gloria
I do have problems with going down stairs or anything that is sloping downwards. Freeze at the top then I have to focus on each step while holding onto something. If on a slope, I need someone to go in front of me or beside me so that I can hold on to them. I also have a problem going up stairs, tending to freeze at the bottom until my brain connects with my legs to lift them. Once I get going I'm then fine.
Regards, Lynette

[Di Di]

Like Lynette, stairs are always a challenge , descending the worse,and if there`s no rail ,I have to go another way or sit on my butt and go down one step seated all the way ...feel totally shattered at the bottom , not to mention then trying to pull self up to a standing position,and talk brain to legs into walking away ............usually the next day is pretty grey with a bit of recovery time both physically and mentally . But that's how it is with OT..............cant manage down a sand dune slope onto a beach anymore, need to find the general path and stick to it , and if there is not hard flat sand to walk I don't bother at all , as the soft uneven sand is just to hard for the brain to cope with so now just don't go there ....I`m a retired surf club member and skier in the true sense of the word due to slopes ,especially uneven ones ....can feel knee to feet leg bristling just thinking about past mishaps ....bit of a rant ...but there it is .................thank Didi NZ

[brittasmom]

My name is Nancy and I have exciting news of my experience with prism eyeglasses. I felt a need to register and share to others on this site that I am the second person to prove that Visual Eye Therapy is a treatment for some of us with OT.

Last month I had my regular scheduled appointment with Dr. Skelsey, Silverstein Eye Center, Kansas City. For 10 years I have been treated for high eye pressure. I have had OT for the same amount of time. The Dr. has prescribed eye drops for the pressure, diagnosed me with Glaucoma, and I have had cataract surgery in both eyes.

After my exam was completed I explained my condition of OT. I printed “What is Orthostatic Tremor” and Jane’s forum comments on prism eyeglasses for him to read. He once again put the machine to my eyes using prism, finding the right strength. His assistant set me up with test glasses. Of course she wanted to know if it was helping, but I had been sitting all this time in the waiting rooms. As I stood for some time, my legs weren’t shaking. So we proceeded to walk out to the reception room where my husband was. I may note that I didn’t have my cane for support, as I don’t need it in small areas. I stood in the center of the room with minimal shakes. I was uncomfortable walking so the Dr. suggested to lower the strength. His assistant took off the glasses to make the change and in a short time my knees began to visibly knock and I was searching for a wall or a chair. When she returned and once again put the prism glasses on, my legs immediately stopped the wild tremors. I had been standing for possibly 10 minutes through all of this with no support in an open room. It was the end of the day and I drew quite a crowd of co-workers observing this very odd situation. All were amazed.

Another interesting point......Dr. Skelsey diagnosed me with Esophoria. So I do have a problem similar to Jane’s lazy eye. Wearing prism glasses is not an easy adjustment. I was disappointed that the new prescribed prism didn’t help my tremors immediately but I continued wearing them. I realized that it was taking time for my eyes and body to make the change. My stance and posture is different. I got extreme leg and arch cramps because I was putting pressure on muscles that haven’t been used. My eye was pulling and I had a feeling of nausea. I had become quite dependent on my walking stick so after a few days I quit using it. That is when I found that I could stand longer than before.

After more than a month, I am now walking into the grocery store free standing, brushing my teeth without a stool, cooking/dishes without sitting in between, and visiting while standing for a longer time. There are still stressful times that I use my walking stick, but not very often.

Prism glasses have probably helped me 40-50% and I am very happy. I started with a lower strength prism to make an easier adjustment. Then we increased but I wasn’t able to cope with it. So I am very pleased and satisfied with the results.

[Lake of the Woods]

Nancy,
This is so interesting. I was wondering if you have heard about the upcoming research and meeting to be held in Omaha, Nebraska in September. There are many people expressing an interest to attend.
Please read about it on the forum and if you want to attend you can email me at peggyincanada@gmail.com - I am collecting names and contact info to pass on to the Dr.

Peggy

[margie1930]

Hi Jane, Your experience with prisms is very interesting and promising. I have a couple of questions.
Do you wear the glasses all the time or only when standing? Are you on medication such as clonazepan? When you say you had some set backs can you relate them to any particular situation?
Do the glasses have any effect on your normal vision? I'd appreciate hearing from you. Thank you.
Margie

[margie1930]

Hi Jane,I posted 2 questions , but don't see them and wonder if you got them. I'm happy for your success and hope it continues. I wonder if you wear the glasses all the time or only when you are standing and also if you are taking any medication. I hope you continue to have success . Margie

[margie1930]

I just looked again and see my questions are there. Please ignore.

[margie1930]

I may sound like an old record. but I think we will only be cured when they find the site in the brain that is causing the tremors (the way they have for essential and parkinson's) and destroy the tissue the way they have for the other two-focused ultra sound. The article in the latest Fortune magazine describes the success they hae had with essential tremor and parkinson's. I wish we were putting some effort to this work. I have written to Univ. of Virginia many times,but they don't seem to be interested. Could we make this a priority, Gloria. I wonder what other people think. Margie

[brittasmom]

Margie, I can answer your questions as to what I've experienced. I wear the prism glasses all day, taking them off at night while I sleep. I have triple lens, so the prism is added to my regular prescription for reading and distance. I don't put them on in the morning until I've finished brushing my teeth and doing all the morning bathroom prep. Before the prism, my legs and my arms, used for support, shook. Now I only feel a bit of tremor.

I'm not sure what would happen if I went back to just my regular eye glasses. But I did switch to them for a day while vacationing and experiencing some nausea. The next morning while brushing my teeth I was searching for a chair as my legs were in a tremor.

I don't take any medication for OT. Not that I haven't had a need, but didn't want to cope with the side affects.

Nancy

[Janevece]

Hi Brittasmom, I am so excited for you. Isn't it a great feeling to be tremor free or even to have a decrease in the tremor?
Margie, I have had lazy eye, double vision since birth and have worn glasses since age 2. I had 2 surgeries at age 2 and 17 to correct the problem. Surgery corrected the cosmetic problems but not the visual.
I wear my glasses all the time. I have most my life. The glasses Dr Padula made me are the ones that helped with the tremor. Just like Brittasmom, they are my regular prescription with the prisms added.
My tremor was completely gone in October with the new glasses and gradually returned in December (to a lesser degree) It began to come and go and now I have periods in the day when it is completely gone and other times when it is present. We are trying to figure out why parts of the day are OK and other times are not. I have many theories, but so far no obvious answers.

[Jenna]

Wow, fascinating. I may have a related success story (see 2nd & 3rd paragraphs below with references to eyes), which I will post both below and elsewhere under a heading that fits better.
My OT tremors have been substantially lessened over the past year after thirty physical-therapy-type treatments in a modality called "Functional Neurology". My doctor's training was at the the Carrick Institute. Functional Neurology is practiced mostly by Chiropractors, but also by some naturopaths and some MDs & DOs.
I've had straightforward simple Orthostatic Tremor for 15 years, kinda variable but overall slowly worsening. I'd say my tremors are between a third and a half better, which is the equivalent of rolling back 5 years of worsening.
In recent years I've also had occasional mild dizziness and occasional POTS (heart racing & breathing fast), and my doctor believes they're all related. His treatment has almost eliminated the last two symptoms.
My Portland Oregon doctor first diagnosed the underlying problem by putting high-tech goggles that video-ed my eye movements while I watched a moving dot and was spun in the chair. Also made me stand on a force-platform device that measure exactly what sway happens. From these he determined which cerebellar & basal ganglia circuits were semi-dormant. The theory is there's an imbalance left-to-right that can be rectified, and the whole system can re-stabilize so that propio-receptive signals flow better, and the body doesn't tremor in a misguided effort to discern its location in space.
So they've led me through eye exercizes designed to "wake up" specific brain circuits. And mild electric zapping of cranial nerves. And some chiropractic adjustments always on the right side of my body.
I know this treatment sounds whacky when the problem shows up in the legs, but here's the analogy: If your ankle hurts and you go to the physical therapist and she works on your hip, you trust she know about movement connections between hip and ankle. So, I trust this doctor knows about brain circuits. It's NOT our legs that is the problem (e.g. OT will show up in my arms and shoulders if I'm the yoga position: downward-facing dog position). Our problem has to do with brain circuits controlling propio-reception. And the brain closely integrates kinesthetic propio-reception with visual function . . . those circuits are intermeshed. So treating me using vision has helped my brain better handle propio-reception - voila!
In addition, I had some prior mild improvement during 2013 from switching to a Paleo diet (gluten-free and grain-free). The functional neurology doctor endorses that, and also has me taking supplements designed to increase the glutathione in my body. Specifically ALA and NAC in a formula from Apex Energetics called "Glutathione recycler" and also their "Neuro-flam" that has resveratrol and turmeric as anti-inflammatories.
It's possible that the improvement is co-incidental, that overall reduced stress in late 2013 & 2014, plus the diet, plus the pills, maybe that's actually what's helped. But my intuition says it's the treatment I've had in his office.