I have ET, but it never stops at rest. It definitely gets worse with intentional movement, especially when my hands are on display.. I now have internal tremors that resonate with my hand tremors. Any additional adrenaline makes the tremors app up. Picture an 8 yr. old trying to play her piano recital hands on display, thinking it's her fault. At 74 now, she breaks my heart, but I applaud her guts. She(I) never quit and hid. She's living.
I have been diagnosed with anxiety when I know I am dealing with ET. I felt so defeated when I left the doctor's office. It affects so much of my life. Thank you for this podcast.
@@icareforyourbrainwithdr.su7103 Thank you for responding. I do not belong to any of the groups yet. To be honest, I am so fatigued with other issues I deal with that I don't spend much time online. That is why I feel so blessed to have found your videos. I am in Raleigh. And I do need to find a doctor that will listen to me. I have seen multiple Neurologists so far. My Primary doctor has been a greater help.
Brilliantly podcast. I have essential tremors, hands legs head and voice. I have had a dat scan that showed I didn’t have PD. I have been having problems with my sight over the last 3/1/2 years. Nobody can seem to get to the bottom of what is happening. I have been diagnosed with binocular double vision with retinal rivalry. I have lost most of my sight in my left eye and having difficulty with right eye. I asked a neurologist if the cerebellum controlled the eye movements and he said yes, but didn’t think the ET was the cause of what is happening. I’m at a loss to know who to turn too next. Thank you for all your videos and help, you have taught me more than any doctor I have seen about ET . Many thanks
ET often causes word finding symptoms for folks bc the cerebellum is connected to the frontal lobes, where we retrieve information. Tremors that are worse on the right often cause worse word finding issues.
@@icareforyourbrainwithdr.su7103OMG! The neurologists 30 years ago didn't indicate that the tremors had anything to do with memory and word finding. I feel like I present as someone with a mild case of Alzheimer's. Before the stroke in 1994, I had had ADD since childhood. I described it as though my original ADD was massively worsened from the damage of the stroke. In spite of the ET OT overlay, I have a remarkably sharp memory. It doesn't add up very well.
So helpful. Loved this podcast, thank you so much. I have ET in hands that I have noticed getting worse. I’m not happy with my neurologist so I will look for a movement disorder specialist. Love you and your information, makes me feel so much better about myself. ❤️
Brilliant video... I can sooo emencly relate to your possion.. I my self have come across some atrocious nuroligical "drs".. I have had 4 Years of trying to find what is wrong I have a et also fnd and Cronic small vessel disease..at 45 Theres so much knowledge that isn't known... I've been to 4 nuroligical doctors.. No mention of. Needle test.. The hand held out is positive.. Tho. Mine started in my head after virus's illnesses and 💉 I have family with parkinsons and I have a exposure to glyposate for many years.
When I hold onto a hard surface for support my arms shake uncontrollably . Stops when I let go . Have just been diagnosed wit OT. Thanks for explaining living with it .
Here’s a new one orthostatic myoclonus, I’ve gone from OT , then ET now there think OM , I’m on clonazepam which helps the tremors but not the pain or fatigue
I have been diagnosed with ET and definitely am dealing with fatigue. I had covid last summer thought the fatigue was long-term covid until my diagnosis in April.
i have OT in legs, trunk and arms, WED in legs and feet. My thumb and indexfinger shakes alot when i use them. When walking my legs feels like they have cogwheels, its like micro cogs, and it feels also like the movement freezes mid air.
My hands are more noticeable mostly right but legs are pronounced when they start it is difficult to stop or impossible but hands can kind of stop with shifting position easier than legs
Ok, im a month late to this video but im shocked that they didn't discuss Focused Ultrasound for Essential Tremor. You can have it done in all fifty states. People go from having extreme problems feeding themselves to being able to draw a straight line. Why wasn't this discussed?
It can be upsetting when a GP says ,well it’s just a tremor. You want to reply ,just try living in my shoes for a week or month. Then tell me how much it impacts your life. Then face living with ET and OT for the rest of your life. The best thing you can do is fire your doctor. No one needs this kind of uncaring attitude.
I have had OT since 2014, just diagnosed 2/24, the neurologist wants to start me on gabapentin, shes is only going on my symptoms, she said i dont need testing, im going to do as she has said for the six weeks on gabapentin. Is gabapentin a good med to try, it makes me feel drunk i guess at night, so why should i take this during the day, i need to be awake and able to drive. I agree with you , if people could see this problem would they believe its real, i have felt so sad and alone and maybe its all in my head i have told myself, but i know its real, please let me know if gabapentin is a good med to try. Thanks , my name is Donna
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I have ET, but it never stops at rest. It definitely gets worse with intentional movement, especially when my hands are on display.. I now have internal tremors that resonate with my hand tremors. Any additional adrenaline makes the tremors app up. Picture an 8 yr. old trying to play her piano recital hands on display, thinking it's her fault. At 74 now, she breaks my heart, but I applaud her guts. She(I) never quit and hid. She's living.
I have been diagnosed with anxiety when I know I am dealing with ET. I felt so defeated when I left the doctor's office. It affects so much of my life. Thank you for this podcast.
Time to find a new doctor and more support! Do you belong to any of the Facebook ET groups? They are excellent.
@@icareforyourbrainwithdr.su7103 Thank you for responding. I do not belong to any of the groups yet. To be honest, I am so fatigued with other issues I deal with that I don't spend much time online. That is why I feel so blessed to have found your videos. I am in Raleigh. And I do need to find a doctor that will listen to me. I have seen multiple Neurologists so far. My Primary doctor has been a greater help.
@@amyjosephson4386 I'm in Pinehurst! Get a referral :-)
Brilliantly podcast. I have essential tremors, hands legs head and voice. I have had a dat scan that showed I didn’t have PD. I have been having problems with my sight over the last 3/1/2 years. Nobody can seem to get to the bottom of what is happening. I have been diagnosed with binocular double vision with retinal rivalry. I have lost most of my sight in my left eye and having difficulty with right eye. I asked a neurologist if the cerebellum controlled the eye movements and he said yes, but didn’t think the ET was the cause of what is happening. I’m at a loss to know who to turn too next. Thank you for all your videos and help, you have taught me more than any doctor I have seen about ET . Many thanks
Thank you Kristen for putting yourself out there. Warm hugs. ❤️❌
Thanks for your conversation about OT and ET, something I knew a little about but definitely have an increased awareness now.
Dr. Sullivan did this for me as well. Validation and understanding. Also made me cry 😢. Thank you!
Thank you for this group. God bless you for these new videos I am watching.
Excellent video, very informative of a matter that is not talk enough
I take Primidone for my ET. It works great! I didn't know it was a cognitive issue as well. I have a problem with remembering nouns.
ET often causes word finding symptoms for folks bc the cerebellum is connected to the frontal lobes, where we retrieve information. Tremors that are worse on the right often cause worse word finding issues.
@@icareforyourbrainwithdr.su7103OMG! The neurologists 30 years ago didn't indicate that the tremors had anything to do with memory and word finding. I feel like I present as someone with a mild case of Alzheimer's. Before the stroke in 1994, I had had ADD since childhood. I described it as though my original ADD was massively worsened from the damage of the stroke. In spite of the ET OT overlay, I have a remarkably sharp memory. It doesn't add up very well.
Me ha emocionado muchísimo escucharos. Gracias. ¿Podrías poner el enlace del grupo de Facebook?
🪷
I agree about neurologist appointments for ET .
When I asked question of one neurologist he said it’s too complicated.
Have that physician watch Dr Sullivan!!! Get a new doctor STAT! ❤️❌
That is MADDENING! That's a reason to fire them.
So helpful. Loved this podcast, thank you so much. I have ET in hands that I have noticed getting worse. I’m not happy with my neurologist so I will look for a movement disorder specialist. Love you and your information, makes me feel so much better about myself. ❤️
I'm so glad it helped you!
Hi ! I'm an E.T. Thank you for understanding. No, I don't know all the symptoms I have which are attributable to ET. Best wishes to you both.
Whoa! Wow.
Brilliant video... I can sooo emencly relate to your possion.. I my self have come across some atrocious nuroligical "drs".. I have had 4 Years of trying to find what is wrong I have a et also fnd and Cronic small vessel disease..at 45 Theres so much knowledge that isn't known... I've been to 4 nuroligical doctors.. No mention of. Needle test.. The hand held out is positive.. Tho. Mine started in my head after virus's illnesses and 💉
I have family with parkinsons and I have a exposure to glyposate for many years.
When I hold onto a hard surface for support my arms shake uncontrollably . Stops when I let go . Have just been diagnosed wit OT. Thanks for explaining living with it .
I've had nerve conduction test and it was very painful.
Here’s a new one orthostatic myoclonus, I’ve gone from OT , then ET now there think OM , I’m on clonazepam which helps the tremors but not the pain or fatigue
I have been diagnosed with ET and definitely am dealing with fatigue. I had covid last summer thought the fatigue was long-term covid until my diagnosis in April.
Dr. Sullivan, do you have a practice?
I jerk as well unintentional key press some often repeated typing on a keyboard
i have OT in legs, trunk and arms, WED in legs and feet. My thumb and indexfinger shakes alot when i use them.
When walking my legs feels like they have cogwheels, its like micro cogs, and it feels also like the movement freezes mid air.
Dr Sullivan mentions: Word Recall and Emotional - do you all experience this?
Yes. I grasp for words and names that I know when trying to express my thoughts in conversation. I also have light and sound sensitivity
My hands are more noticeable mostly right but legs are pronounced when they start it is difficult to stop or impossible but hands can kind of stop with shifting position easier than legs
Ok, im a month late to this video but im shocked that they didn't discuss Focused Ultrasound for Essential Tremor. You can have it done in all fifty states. People go from having extreme problems feeding themselves to being able to draw a straight line. Why wasn't this discussed?
Hard to fit everything relevant to ET and OT into one hour.
It’s been discussed in a lot of other talks by Dr. Sullivan.
I am my room mate shake neither are diagnosed tremors that I am aware of.
Do you stay cold at all if you don't mind sharing?
Hmmm wine would also warm
I am not saying cold makes me shake I am saying I do both and it is severe in my nerves and it gets worse
'impossible to understand unless you experience it"
What is known causes is it more illness or side effects of medications?
Degeneration in the Purkinje cells in the cerebellum, same cells that are affected by alcohol. Some genetic, some unknown environmental.
I only drink from a straw
It causes ear aches
Whoa. Only straw. 😢
It can be upsetting when a GP says ,well it’s just a tremor. You want to reply ,just try living in my shoes for a week or month. Then tell me how much it impacts your life. Then face living with ET and OT for the rest of your life. The best thing you can do is fire your doctor. No one needs this kind of uncaring attitude.
I have had OT since 2014, just diagnosed 2/24, the neurologist wants to start me on gabapentin, shes is only going on my symptoms, she said i dont need testing, im going to do as she has said for the six weeks on gabapentin. Is gabapentin a good med to try, it makes me feel drunk i guess at night, so why should i take this during the day, i need to be awake and able to drive. I agree with you , if people could see this problem would they believe its real, i have felt so sad and alone and maybe its all in my head i have told myself, but i know its real, please let me know if gabapentin is a good med to try. Thanks , my name is Donna
33823🤗 what is the email?