focused ultrasound therapy

[margie1627]

I have been following the use of focused ultrasound therapy at the Univ.of Virginia. Their
success in using it for essential tremor (2 year trials) and now for Parkinson's makes me wonder if it
is applicable to OT. I have written to them numerous times and am always told they are not working
on OT. I wonder why not and hope that someone sees the possibility that it would work for OT too.
Does anyone know of any thoughts to investigate it and I would like to suggest that some efforts
be made to do so. Margie

[drochs]

I don't believe they know exactly what area of the brain is associated with OT as yet. To treat with Surgery or Focused Ultrasound is of no benefit without locating the region to ablate.

My motion disorder specialists informed that some of their patients have had deep brain stimulation (surgical procedures) with inconsistent outcomes.

I also have been following the University of Virginia and the Israeli focused ultrasound studies
Israel has now approved FU for the treatment of Parkinsons !

Just got my OT diagnosis this morning.

Meds and PT working well. Concerned about the dyskenesia related tremors that can occur with long term levadopa therapy (3 to 5 years). Hopefully they will come up with a location and a focused ultrasound or other non invasive procedure before then

[gloria]

drochs -

Thank you for joining the forum and responding to the question from Margie about Focused Ultrasound. I am curious if you had tried any of the more common medications for OT, gabapentin or clonazepam before going on Levadopa. Before I was diagnosed with OT I was put on Levadopa but it didn't work for me. Although, everyone seems to respond differently with this "crazy" disease

wishing you all the best.

Gloria

[Sketches]

I have been taking Clonazepam for several years. It seems to be the first line of treatment and it helped me. I take .25 mg 4 x daily. My conditioned worsened some time ago and I was given Keppra (leviteracetam) in addition to the Clonazepam. This combination has worked the best for me. I am usually able to stand for much longer periods of time. I do have bad reactions to food and chemicals and if I am exposed to certain products, the tremors get very bad. They take a while to subside and then exhaustion sets in, and I start over again. I haven't noticed anyone here having taken Keppra. It really has made a big difference in my ability to function.

Phyllis

[margie1930]

I know that the site of origin of the tremors has to be found before focused ultra sound can be used. Is anyone working on brain imaging that will locate that site. I really think it is similar to Parkinson's and ET and would think it could be found if someone was to work on it.

[admin]

Hi Margie

An interesting note in yesterdays news:

The group of neuroscientists that is advising the Obama administration’s Big Science brain project delivered to the NIH its final report on June 5 with a recommendation that nearly $5 billion be spent through the 2025 federal fiscal year to develop a set of advanced technologies that will enhance understanding of how neural circuitry work……

It is hoped that brain wiring diagrams will reveal patterns of neural activity that ultimately give insight into the underlying basis for sensory function, thought and emotion—and will provide a new understanding of what goes awry in psychiatric and neurodegenerative diseases.

and I especially liked the analogy of the cost to putting someone on the moon - seems like a bargain when they explain it this way

“the entire cost of the space program to put a man on the moon added up to about one six pack of beer for every person in America living at the time. And the entire cost of the Brain Initiative proposed here adds up, inflation corrected, to about one six pack of beer for each American over the entire 12-years of the program.”

http://bit.ly/brainProjectNews

[admin]

one more thought...

The update on the research that was funded by the OT community NORD grant included some related information:

"Our aim is to find out whether an artificial stimulation of the cerebellum (a part of the brain situated at the back and bottom of the head) can improve the orthostatic tremor. To that end we stimulated daily for 5 days, 9 patients with a primary orthostatic tremor. The amplitude of the tremor was measured before and after the stimulations by recording the muscle activity of the legs while the patients were standing.
After the stimulations the patients found that their tremor was not improved, yet the muscle activity caused by the tremor was clearly decreased. This suggests that the stimulation was effective but not enough to be felt as beneficial. In the same time we scanned the brain of the patients by using MRI. The analysis of the brain images has not been done yet."

http://www.orthostatictremor.org/phpBB3 ... f=41&t=688

[anita]

I have been taking Clonazepam for several years. It seems to be the first line of treatment and it helped me. I take .25 mg 4 x daily. My conditioned worsened some time ago and I was given Keppra (leviteracetam) in addition to the Clonazepam. This combination has worked the best for me. I am usually able to stand for much longer periods of time. I do have bad reactions to food and chemicals and if I am exposed to certain products, the tremors get very bad. They take a while to subside and then exhaustion sets in, and I start over again. I haven't noticed anyone here having taken Keppra. It really has made a big difference in my ability to function.

Phyllis

Hi Phyllis, I see that you posted this statement in 2014. I was wondering how you've been doing on your meds since then. My doctor has suggested taking Keppra. I am now taking only gabapentin. Are you still taking Keppra? What dosage? And are you still taking clonazepam and what dosage?
Thanks and best wishes,
Anita