This was so informative. Why didn't the neurologist who I just paid handsomely for a consultation about my ET tell me some of this stuff? Very grateful for Karen Sullivan's insights and clear presentation.
Thank you for such marvelous explanations. I have ET + ME/CFS; diagnosed 20 yrs ago. I know most of what you are approaching has been researched since then. Finding doctors who are knowledgeable + interested enuf to learn is impossible. I'm an RN which gives me a little advantage, but I have never heard any medical person make such sense + bring this to a level where less than Phd understand. I found you by accident ! Thank goodness.
I am 54 years old and have had ET since my 20’s (runs in the family). At 53, I started getting a resting tremor (right side leg, arm and hand) and rigidity right about the same time I started getting menopausal hot flashes. I tried propanalol for a year which didn’t help the resting tremor at all and in Dec 2021 I was diagnosed as having tremor dominant PD. Of course, I still have the ET on my left side and a head tremor. I now take carbidopa-levodopa which has removed the rigidity and helps the tremors somewhat. I have balance and dIzziness and have always struggled with sleep. My sense of smell is still good but vision is questionable. I appreciate this channel and have gained much insight. My sister just had DBS for her ET (one side). Im the only one with PD and had the ET much less than mom and sister. Now I’m the worst.
Can you tell me more about your vision? I’ve been worried about mine lately.. I have ET since 15 years idk and nana had PD since late 20’s. I’ve been having vision problems lately (along with symptoms of PD too for nearly 2 years).
Hi! Thanks so much for the fantastic information. I'm probably ome of your younger audience members here, I'm not sure. But I'm here because I just turned 37 and am noticing some things are not right. My grandmother passed away from Parkinson's a few years ago. I'm hoping I can make sense of my symptoms and find out if they're connected or what I should look out for. I've been struggling with severe daytime hypersomnolence lately and internal tremors when I'm a resting state such as sitting down or laying down, trying to sleep. I just can't seem to feel "awake" or rested. It's been going on for the better part of a month. My grandmother was one of the most active people I've ever met before things worsened with her PD and I'm telling you, I don't know how she managed.
Have there been studies of people who have ET since childhood? It seems most if not all you have referenced are 50 and up for onset. I dont have a moment of my life that i can recall without shaking and other symptoms. At 75 now, a could write a book on nontremor symptoms.
Thank you for the exceptional information in all of your videos! I would greatly appreciate hearing of any studies regarding the effects of industrial chemical exposures in the workplace on neurological health. I would also like to know if people in the early stages of neurological disorders typically have problems with strength or generating power.
About a year prior to completing the academic work for my Doctorate, I developed CRPS. (Undergrads in Philosophy, Sociology. Masters in Clinical Psychology. My Doctorate program was Marriage and Family Therapy, a program I was forced to end, along with forced early retirement of my career with the onset of CRPS). Given I was in graduate school, I immediately dived into the literature. I also purchased clinical texts on Neurology and Neuropathology. CRPS has a mountain of correlation with movement disorders. In fact, one of the possible symptoms of CRPS is Dystonia, which I have experienced intermittently. The correlation is bilateral, meaning that having a movement disorder puts you at risk to develop CRPS and if you have CRPS, it puts you at risk to develop movement disorders. I have a family history of neurological disorders (MS, Parkinsons, Essential Tremor). I have had Essential Tremor for over 2 decades, developed CRPS about 4 years ago. Roughly a year ago, I acquired intermittent Orthostatic Tremor. I have had unbelievable difficulty finding a neurologist well versed in CRPS and currently don't have one. So no one is tracking it, nor is anyone tracking the progression of my movement disorders. Your videos have been very helpful, much of it obviously consistent with the literature, but also new stuff. .
Obviously, causation is very difficult to credibly establish. That said, there are a variety of symptoms that I have experienced that my be clinically significant. For example, my CRPS has progressed through multiple limbs. I also have the "cold kind" of CRPS, rather than the more prevalent "hot kind." In the literature, both put the patient At Risk for poorer outcomes.I believe the reason for this latter is that when I did a deep dive into the literature, it was clear that an anti-inflammatory diet was one of the most helpful, least invasive changes a patient can make, along with daily PT which I also do. I have a piece of foam I put in my mouth to scream into when I do PT as sometimes the PT is excruciating. It was especially in the beginning few years. As a result of both of these patient-adapted factors, which I rarely fail to follow, my limbs haven't swollen up into "elephantitises" lobster red limbs filled with intractable inflammation. Nonetheless, my limbs often look "dead," pale, splotches, nearly transparent skin, toe nails that drop off, weird patches of hair growth, etc. I feel like at least some of this is clinically relevant. Another interesting symptom is that while CRPS has advanced up my right leg, it skipped the knee (?!) to then travel up into my femur. I read many books on illness and disability and one of them suggested stepping back and getting some perspective on serious chronic medical conditions. A calm curiosity which I have found mentally helpful in managing the mental health ramification of this turn of events in my life, my previous life taken from me by CRPS. CRPS has been called, "the suicide disease." I am past 4 years and I am still alive..... Not sure this is a good thing, but I'm Poly - my first partner and I have been together for 25" years, another woman joined us 20+ years ago. They have convinced me that sticking around is a good thing, even an essential thing, as far as they are concerned. So, I am trying to stick around.... .
@@chetanrs It takes a back seat to the Peripheral Neuropathy (I drop things like glasses and dishes constantly), which takes a back seat to the agonizing relentless pain of CRPS. en.wikipedia.org/wiki/Complex_regional_pain_syndrome .
in the ET group I am in on fb, it has been mentioned that ET now includes resting tremor. Is this true? Since this video is 2 years old now, has there been new information regarding that or any other changes made?
I have seen a ET lecture on TH-cam where the said in rare cases ET can have resting tremor and its called 'overload.' I apologize I don't recall which video or I would link it for you.
I wish you would say Essential and Parkinsons instead of ET and PD as I feel you mix them up when talking and its clear its difficult for you to say.... ETs PDs
This was so informative. Why didn't the neurologist who I just paid handsomely for a consultation about my ET tell me some of this stuff? Very grateful for Karen Sullivan's insights and clear presentation.
Thank you for such marvelous explanations. I have ET + ME/CFS; diagnosed 20 yrs ago. I know most of what you are approaching has been researched since then. Finding doctors who are knowledgeable + interested enuf to learn is impossible. I'm an RN which gives me a little advantage, but I have never heard any medical person make such sense + bring this to a level where less than Phd understand. I found you by accident ! Thank goodness.
My husband was just diagnosed yesterday with ET. I’m trying to get as much information as possible.
Really good stuff. I hope you continue to bring this new research to light. There is definitely a knowledge gap with some doctors on essential tremor.
That's because they're not Neurologists
I am 54 years old and have had ET since my 20’s (runs in the family). At 53, I started getting a resting tremor (right side leg, arm and hand) and rigidity right about the same time I started getting menopausal hot flashes. I tried propanalol for a year which didn’t help the resting tremor at all and in Dec 2021 I was diagnosed as having tremor dominant PD. Of course, I still have the ET on my left side and a head tremor. I now take carbidopa-levodopa which has removed the rigidity and helps the tremors somewhat. I have balance and dIzziness and have always struggled with sleep. My sense of smell is still good but vision is questionable. I appreciate this channel and have gained much insight. My sister just had DBS for her ET (one side). Im the only one with PD and had the ET much less than mom and sister. Now I’m the worst.
Can you tell me more about your vision? I’ve been worried about mine lately.. I have ET since 15 years idk and nana had PD since late 20’s.
I’ve been having vision problems lately (along with symptoms of PD too for nearly 2 years).
Hi! Thanks so much for the fantastic information. I'm probably ome of your younger audience members here, I'm not sure. But I'm here because I just turned 37 and am noticing some things are not right. My grandmother passed away from Parkinson's a few years ago. I'm hoping I can make sense of my symptoms and find out if they're connected or what I should look out for.
I've been struggling with severe daytime hypersomnolence lately and internal tremors when I'm a resting state such as sitting down or laying down, trying to sleep. I just can't seem to feel "awake" or rested. It's been going on for the better part of a month. My grandmother was one of the most active people I've ever met before things worsened with her PD and I'm telling you, I don't know how she managed.
How are you doing nowadays ? Did you get a diagnosis ?
Have there been studies of people who have ET since childhood? It seems most if not all you have referenced are 50 and up for onset. I dont have a moment of my life that i can recall without shaking and other symptoms. At 75 now, a could write a book on nontremor symptoms.
Thank you for the exceptional information in all of your videos! I would greatly appreciate hearing of any studies regarding the effects of industrial chemical exposures in the workplace on neurological health. I would also like to know if people in the early stages of neurological disorders typically have problems with strength or generating power.
Definitely the latter
Yes I have ET I have problems with my wrists and opening things/ strength in my hand since about early 20’s.
About a year prior to completing the academic work for my Doctorate, I developed CRPS. (Undergrads in Philosophy, Sociology. Masters in Clinical Psychology. My Doctorate program was Marriage and Family Therapy, a program I was forced to end, along with forced early retirement of my career with the onset of CRPS).
Given I was in graduate school, I immediately dived into the literature. I also purchased clinical texts on Neurology and Neuropathology. CRPS has a mountain of correlation with movement disorders. In fact, one of the possible symptoms of CRPS is Dystonia, which I have experienced intermittently. The correlation is bilateral, meaning that having a movement disorder puts you at risk to develop CRPS and if you have CRPS, it puts you at risk to develop movement disorders. I have a family history of neurological disorders (MS, Parkinsons, Essential Tremor). I have had Essential Tremor for over 2 decades, developed CRPS about 4 years ago. Roughly a year ago, I acquired intermittent Orthostatic Tremor.
I have had unbelievable difficulty finding a neurologist well versed in CRPS and currently don't have one. So no one is tracking it, nor is anyone tracking the progression of my movement disorders.
Your videos have been very helpful, much of it obviously consistent with the literature, but also new stuff.
.
Obviously, causation is very difficult to credibly establish. That said, there are a variety of symptoms that I have experienced that my be clinically significant. For example, my CRPS has progressed through multiple limbs. I also have the "cold kind" of CRPS, rather than the more prevalent "hot kind." In the literature, both put the patient At Risk for poorer outcomes.I believe the reason for this latter is that when I did a deep dive into the literature, it was clear that an anti-inflammatory diet was one of the most helpful, least invasive changes a patient can make, along with daily PT which I also do. I have a piece of foam I put in my mouth to scream into when I do PT as sometimes the PT is excruciating. It was especially in the beginning few years. As a result of both of these patient-adapted factors, which I rarely fail to follow, my limbs haven't swollen up into "elephantitises" lobster red limbs filled with intractable inflammation. Nonetheless, my limbs often look "dead," pale, splotches, nearly transparent skin, toe nails that drop off, weird patches of hair growth, etc.
I feel like at least some of this is clinically relevant. Another interesting symptom is that while CRPS has advanced up my right leg, it skipped the knee (?!) to then travel up into my femur.
I read many books on illness and disability and one of them suggested stepping back and getting some perspective on serious chronic medical conditions. A calm curiosity which I have found mentally helpful in managing the mental health ramification of this turn of events in my life, my previous life taken from me by CRPS. CRPS has been called, "the suicide disease." I am past 4 years and I am still alive..... Not sure this is a good thing, but I'm Poly - my first partner and I have been together for 25" years, another woman joined us 20+ years ago. They have convinced me that sticking around is a good thing, even an essential thing, as far as they are concerned. So, I am trying to stick around....
.
How do you manage with ET is the shaking significant ?
@@chetanrs It takes a back seat to the Peripheral Neuropathy (I drop things like glasses and dishes constantly), which takes a back seat to the agonizing relentless pain of CRPS. en.wikipedia.org/wiki/Complex_regional_pain_syndrome
.
@@shannonmcstormy5021 Jesus, I really don't have words.
It's good to see you have understanding/support partners.
Thank you so much for explaining this!
Can PD be inherent?
misspoke at 3.20 PD oe ET or ET+ ??
in the ET group I am in on fb, it has been mentioned that ET now includes resting tremor. Is this true? Since this video is 2 years old now, has there been new information regarding that or any other changes made?
I have seen a ET lecture on TH-cam where the said in rare cases ET can have resting tremor and its called 'overload.' I apologize I don't recall which video or I would link it for you.
@@pdobernigg i ended up being diagnosed by a movement disorder neurologist with cervical dystonia.. i was initially misdiagnosed..
Hmm maybe, a doctor I saw at the surgery not too long ago said I had “resting tremor” in my notes, but I have ET not PD. He never explained it to me.
I wish you would say Essential and Parkinsons instead of ET and PD as I feel you mix them up when talking and its clear its difficult for you to say.... ETs PDs
maybe she could figure out how to shoot a TH-cam video