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Great information, i hope this works.
Are there support groups in the Chicago area?
We have two in Illinois. They are in Aurora and in Winfield. However, many are meeting online during COVID. If you want to reach out to one of these, here is the contact information: Aurora, IL Support Group leader is Christine Weincek, cweincek@rushcopley.com. The Winfield, IL Support Group leader is Lynn Bernau, lbb1219@yahoo.com.
As a ET person, we need a medication specifically for ET. None of the meds prescribed by neurology doctors have worked for me. Only gave me bad side effects.
Me as well
I am a member of your club.
Me too other medications don’t work.
This podcast will not play on my windows 10 computer in Chrome browser.
Do you have a cell phone? That might be another avenue for listening to it. Sorry you are having trouble accessing it.
My mother has the worst tremors I have ever seen . Her head won’t quit shaking uncontrollable. It makes life very difficult. It’s hard to eat to walk to have a normal life. What can we do for her? Cathy !! Email archnet11@aol.com Really need help. Thank you!
Have had ET for over 40 years, with head tremor, then left arm tremor, and now recently right arm (dominant) tremor. Have been on Propranolol ER and Primidone for years, but tremors continue. I am now 68 and looking into Botox injections in my neck for the head tremor. Would be interested in information about Sage 324 as trials progress.
We’ll be sure to share any updates about the research on Sage 324 in Tremor Gram, Tremor Talk and on our website. Here is the link to the clinical trial site: https://ichgcp.net/clinical-trials-registry/NCT04305275. They are no longer recruiting participants.
Hopefully they find some cure for this disorder and save many life’s out there
May god bless
Does anyone have any updates on the study that was supposed to be conducted at the University of California School of Medicine who were “to launch a novel clinical trial to examine the safety, efficacy and pharmacological properties of cannabis as a potential treatment for adults with essential tremor (ET). Currently, ET is treated using repurposed medications originally developed for high blood pressure or seizures. Surgery is another option.
Scheduled for early 2019, the phase I/II trial will assess efficacy and tolerability of an oral cannabis formulation comprised of cannabidiol (CBD) and low-dose tetrahydrocannabinol (THC). “
The study experienced several delays due to Canadian regulatory approvals to permit export of the product to the U.S.(it was not available in the U.S. so the university had to reach out to a company in Canada). Recruitment was also challenging, then COVID happened which halted it for a while. We just learned that a report about the study will be published in the spring. We’ll be sure to post it and share it with everyone.
I too have been awaiting the publication of these results.
I read somewhere about B1 Thiamine muscle injections instead of Botox. I’d love something more natural, less chemicals. Have you heard about this?
We have seen this study and have not promoted it for a couple of reasons. First of all, more research needs to be conducted to follow-up. This study only involved two people, so that’s a very, very small sampling. A common symptom of a tremor (NOT essential tremor) is a vitamin B1 deficiency. So it’s possible that these individuals had a deficiency, which caused their shaking. But again, more research needs to be done.
Found the link for the B1 information
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5884259/