Just found you - for my cousin. Doing a deep dive, now, and going to watch your webinar, soon. He was diagnosed with ET a few years ago, but has recently experienced lagging reflexes on one side of his body. (No resting tremor, though). He's scheduled for his first Datscan next monday. Both his father and mine had Parkinson's.
I feel I’m developing this. When you asked about the social side of it I was reaching across my nightstand to grab my tea and almost spilled it AND made the cat jump because of the clanking of the spoon. Patients will ask me quite frequently why my hands are shaky. That’s what first brought it to my attention. So I cut out caffeine and that didn’t help. I don’t do substances but I think people around me think I do because I’m 48 and I’m told I look like I’m in my late 30s. I feel very self conscious at work due to it.
I’m watching this as part of an ET support group. The education around the very real embarrassment, shame and anxiety around tremors is validating. However, it’s only the last 5 minutes or so that offer CBT as an option for how to deal with this anxiety and shame. How to transform behavior that is self limiting because of the long term effects of ET. CBT is one option. Affirmations work for some. My sense is that a more somatic approach to a very somatic condition might be helpful. I wonder about the benefit of Somatic Experiencing as another option for healing. What has been useful for others?
Thank you for your hard work in this area. It's so nice to see someone interested in essential tremor. I just subscribed and look forward to following your videos.
Hi, I have ET, with head and voice tremor, worse at times. I'm quite extrovert which is lucky. I just announce that I have a tremor, that its not Parkinson's, and it won't kill me. I'm comfortable with it and want you to be comfortable too. 🤗
Playing guitar is really hard under pressure. Performing. I can still do archery and this might be good for ET. Learning the breathing, and the stillness to release the arrow properly.
I mostly have head and hand tremor and embarrassment is one biggie. I also have high anxiety which makes it worse. I always say that my ET and anxiety are constantly fighting each other. I stay tired a lot! I take that it's due from meds and adrenaline from anxiety.
I have ET since I can remember. Always get anxious but still go to social events and gatherings. I Just avoid eating or drinking. With my own family when I go to restaurants, I order what I can easily eat or drink not actually what I would like to eat. I mostly eat french fries and a drink with a straw. I have on long plane trips eat nothing just a bar and water.
I have had this since childhood. As an example when I was younger I might be asked to go out to dinner with friends. I would think about the restaurant, if I knew it, how do they serve drinks? If it is stemware I can't handle that so I either wouldn't go or not order liquid. Soup was out of the question. There were few calm moments outside my house. It felt like I was always playing chess and thinking 3 moves ahead. Exhausting.
ET destroyed my life. It kept me from connecting with people, it made it nearly impossible to work although I have managed to hold down crappy jobs that didn't pay much and had no health insurance. Shame, frustration and self loathing have been my contant companions. It took everything from me, EVERYTHING. my entire life has been wasted.
Dr. Sullivan I am new on your website. Three years ago I was diagnosed with arteriovenous malformation (AVM) at the age 0f 59. I had Gamma Knife surgery 6 months later, but I have been having sensory seizures like numbness on the right side of my body, blurry eye sight and in the last 6 months I have tremors in my right hand only. My AVM is on the left side of my brain affecting problems with the right side of my body. I have found that drinking helps calm the tremors, so I stopped taking my Topiramate. Is there any other way for me to stop the tremors without drinking. Takes me 2 beers a day to calm the tremors down so people don't notice, but when a new day starts here I go again. Thank you, Julie
I have shied away from doing certain things because if ET such as serving food/drinks (which is a major problem because I am a chef and caterer). I also hate to do things in front of people because I know that my ET is going to show!
I have had this since childhood. As an example when I was younger I might be asked to go out to dinner with friends. I would think about the restaurant, if I knew it, how do they serve drinks? If it is stemware I can't handle that so I either wouldn't go or not order liquid. Soup was out of the question. There were few calm moments outside my house. It felt like I was always playing chess and thinking 3 moves ahead. Exhausting.
Wow..someone talking about ET? I thought it was a forgotten and not cared about condition. You are so right about everything you said! Subbed
100% on target Dr Sullivan, thank you...
Just found you - for my cousin. Doing a deep dive, now, and going to watch your webinar, soon. He was diagnosed with ET a few years ago, but has recently experienced lagging reflexes on one side of his body. (No resting tremor, though). He's scheduled for his first Datscan next monday. Both his father and mine had Parkinson's.
I feel I’m developing this. When you asked about the social side of it I was reaching across my nightstand to grab my tea and almost spilled it AND made the cat jump because of the clanking of the spoon.
Patients will ask me quite frequently why my hands are shaky. That’s what first brought it to my attention. So I cut out caffeine and that didn’t help. I don’t do substances but I think people around me think I do because I’m 48 and I’m told I look like I’m in my late 30s. I feel very self conscious at work due to it.
I’m watching this as part of an ET support group. The education around the very real embarrassment, shame and anxiety around tremors is validating. However, it’s only the last 5 minutes or so that offer CBT as an option for how to deal with this anxiety and shame. How to transform behavior that is self limiting because of the long term effects of ET. CBT is one option. Affirmations work for some. My sense is that a more somatic approach to a very somatic condition might be helpful. I wonder about the benefit of Somatic Experiencing as another option for healing. What has been useful for others?
Thank you for your hard work in this area. It's so nice to see someone interested in essential tremor. I just subscribed and look forward to following your videos.
Hi, I have ET, with head and voice tremor, worse at times. I'm quite extrovert which is lucky. I just announce that I have a tremor, that its not Parkinson's, and it won't kill me. I'm comfortable with it and want you to be comfortable too. 🤗
Playing guitar is really hard under pressure. Performing. I can still do archery and this might be good for ET. Learning the breathing, and the stillness to release the arrow properly.
I mostly have head and hand tremor and embarrassment is one biggie. I also have high anxiety which makes it worse. I always say that my ET and anxiety are constantly fighting each other. I stay tired a lot! I take that it's due from meds and adrenaline from anxiety.
I have ET since I can remember. Always get anxious but still go to social events and gatherings. I Just avoid eating or drinking.
With my own family when I go to restaurants, I order what I can easily eat or drink not actually what I would like to eat. I mostly eat french fries and a drink with a straw. I have on long plane trips eat nothing just a bar and water.
I have had this since childhood. As an example when I was younger I might be asked to go out to dinner with friends. I would think about the restaurant, if I knew it, how do they serve drinks? If it is stemware I can't handle that so I either wouldn't go or not order liquid. Soup was out of the question. There were few calm moments outside my house. It felt like I was always playing chess and thinking 3 moves ahead. Exhausting.
ET destroyed my life. It kept me from connecting with people, it made it nearly impossible to work although I have managed to hold down crappy jobs that didn't pay much and had no health insurance. Shame, frustration and self loathing have been my contant companions. It took everything from me, EVERYTHING. my entire life has been wasted.
Dr. Sullivan I am new on your website. Three years ago I was diagnosed
with arteriovenous malformation (AVM) at the age 0f 59. I had Gamma
Knife surgery 6 months later, but I have been having sensory seizures
like numbness on the right side of my body, blurry eye sight and in the
last 6 months I have tremors in my right hand only. My AVM is on the
left side of my brain affecting problems with the right side of my body.
I have found that drinking helps calm the tremors, so I stopped taking my Topiramate. Is there any other way for me to stop the tremors without drinking. Takes me 2 beers a day to calm the tremors down so people don't notice, but when a new day starts here I go again. Thank you, Julie
I wish you would’ve gotten a reply 😢
Please add Turkish subtitles
Very helpful 😊
Thank you.
I have shied away from doing certain things because if ET such as serving food/drinks (which is a major problem because I am a chef and caterer). I also hate to do things in front of people because I know that my ET is going to show!
I have had this since childhood. As an example when I was younger I might be asked to go out to dinner with friends. I would think about the restaurant, if I knew it, how do they serve drinks? If it is stemware I can't handle that so I either wouldn't go or not order liquid. Soup was out of the question. There were few calm moments outside my house. It felt like I was always playing chess and thinking 3 moves ahead. Exhausting.