I feel like I was one of the lucky ones to be included in the focus ultrasound clinical trials at the University of Virginia. This experimental procedure was done at no cost to me through a federal grant. My sister read about the trials in the Richmond newspaper. When I first inquired about the program the possibility of acceptance was bleak. Hundreds of people were interested and I was pretty far down on the list. However most of these could not meet the designated criteria. Prior to being accepted I had to undergo 3 days of testing over a 3 month period. The tests and interviews were administered by a variety of doctors. I met with the UVA coordinator, the surgeon who would perform the procedure ( Dr. Elias ), a neurologist, a physical therapist, a psychiatrist, and a psychologist. I had to have ekgs, bloodwork, and a catscan of the brain.
On 9/7/11 I reported for surgery. My head was shaved and rubber tubing was placed on my head. The operating room was filled with doctors as well as the engineers who built the ultrasound machine. I was placed in a catscan for about 7 hours. It was a long process for me since it took a long time to line up the scanner before they zapped my brain. I was zapped more times than I can remember.
I had 3 follow up visits to Charlottesville to be checked out by the team. They were genuinely interested in how I was recovering. They were very professional and very caring. What a great group.
Prior to the procedure I was told that it would only improve my right hand and it was successful. I can now write in a checkbook and eat in public. I was hoping it would take away some of my head tremors but it didn’t. Head tremors are most common in women.
I have had tremors in my hands since I was in my 20s and they started in my neck/head in my 40s. Even though my right hand is normal, I still have tremors in my head and left hand and my voice is shaky. If I get nervous or do anything out of the ordinary my tremors increase significantly. ET destroys your confidence and it hard to find jobs. You are also aware of people staring at you in public.
I am extremely thankful to Dr. Elias and all of the others that made this a success. This gives encouragement to those with ET. I hope that this process can be used to treat/cure other conditions in the future.
Becky Epton
Member, Falls Church Support Group
Becky, I am taking Caprylic Acid (octonic acid) for voice and head tremor and it also helps my hand tremor a little bit. I tried the 600 mg softget and it made me very lethargic. Since the oil ran out when I cut the softgel, I just made a hole in it with a needle and dripped about 1/3 of the oil onto a cookie and then ate the cookie. As far as I can tell, the oil has no taste. It is my understanding that the Caprylic Acid is most effective for people whose tremor is quieted by alcohol. The Caprylic Acid I take was manufactured by “Now Foods”. They are located in Bloomington, Illinois.
I purchased mine at a health food store here in the St. Louis Area. I did phone the Now Foods Company and was told that they do not make it in a smaller dose. Also, I talked with my doctor about the Caprylic Acid and he could see no reason not to try it.
I am also told by some of the people who tried the Caprylic Acid that it did not work for them. I am currently changing and adjusting the doseage to try to get to the most effective dose with the least side effects.
Becky, I am taking Caprylic Acid (octonic acid) for voice and head tremor and it also helps my hand tremor a little bit. I tried the 600 mg softget and it made me very lethargic. Since the oil ran out when I cut the softgel, I just made a hole in it with a needle and dripped about 1/3 of the oil onto a cookie and then ate the cookie. As far as I can tell, the oil has no taste. It is my understanding that the Caprylic Acid is most effective for people whose tremor is quieted by alcohol. The Caprylic Acid I take was manufactured by “Now Foods”. They are located in Bloomington, Illinois.
I purchased mine at a health food store here in the St. Louis Area. I did phone the Now Foods Company and was told that they do not make it in a smaller dose. Also, I talked with my doctor about the Caprylic Acid and he could see no reason not to try it.
I am also told by some of the people who tried the Caprylic Acid that it did not work for them. I am currently changing and adjusting the doseage to try to get to the most effective dose with the least side effects.