I've had essential tremor for a couple of years. Personally I don't find it very "essential." I'd certainly be happier without it! When I'm standing up, my head shakes. It's not that noticeable. People only notice it if I ask them to look at my head when I'm standing. I'm going to be getting a full neurological workup one day in February. Hopefully I will eventually find out why I'm a bobblehead. I'll have to be at the hospital for 8 a.m. What's difficult is that I have to bring someone with me who knows me well. This isn't easy because I don't have a spouse or partner. I only have one friend who doesn't wake up before noon!
I was diagnosed with familial essential tremors in July 2024 (my dad and that side of the family had it). I am 54. It does get worse as you age. My doctor joked and said I will see you in ten years. So, for me, I can manage on my own without medications. Anxiety makes it worse, and caffeine makes it worse, so I cut out coffee, which seems to help, and I switched to tea, but eventually I will need to cut all caffeine. I notice it more with exercising and holding posture, but I just need to accept that or take medication. I ruled out other things that can cause shaking before I went to a neurologist. It is frustrating because so many conditions can cause shaking. We don't have a comprehensive testing system in the US where you can rule out everything. Unless you are an executive, of course! For me, knowing and knowing how to treat something is better than not knowing, but everyone is different in that way. If it were me, I would get tested for Parkinson's because that's another progressive condition, but there are medications that reduce the tremors. Good luck.
I would like to share an experience I've just had. I've had ET for 30 years, mild at first, gets worse as I age but not bad enough for meds yet and I am 74. But I recently had out patient surgery. Came home with the chills which progressed over a couple hours to sever chills. Temperature was only 99.6. And this is what I want to tell you out there with ET. My chills affected my tremors so badly I was shaking severely, couldn't use a phone or hold anything. Tylenol finally stopped the chills which stopped the shaking. But it was very scary. When I talked to my gastro Dr. that did the surgery, he said chills after an anesthesia is not unusual. I haven't spoken to my neurologist about it yet. Just thought I'd give you all a heads up.
I just watched a segment on FB with Julian Fellowes writer of Downtown Abbey who had his tremor treated successfully with a brain procedure in UK, not surgery. He was expressing that few people knew about treatment and he wanted to spread the word. I am following him in case my case gets unmanageable or my children inherit this. My dad suffered greatly from shaking most of his adult life, but particularly when he was older.
I just watched a segment on FB with Julian Fellowes writer of Downtown Abbey who had his tremor treated successfully with a brain procedure in UK, not surgery. He was expressing that few people knew about treatment and he wanted to spread the word. I am following him in case my case gets unmanageable or my children inherit this. My dad suffered greatly from shaking most of his adult life, but particularly when he was older.
@2life6 Welcome to Mayo Connect, where people share their health journeys and try to help one another along the way. I read this with interest, because I am a third-generation (to my knowledge) tremor sufferer, as well as having Parkinson's Disease spanning 3 generations on both sides of my family. So far I am managing my tremors with primodone in the morning and a single alcoholic beverage in the early evening, but the severity varies from day to day.
The procedure you learned about is called "Deep Brain Stimulation." It has been used for Parkinson's Disease, some Essential Tremors and some forms of epilepsy for a number of years.
The person is placed under aware sedation, and the affected part of the brain is stimulated with a probe. If the tremor stops or is substantially reduced, a permanent probe and stimulation device are implanted. Usually, the patient must fail all anti-tremor medications and have function-altering tremors before being considered for this procedure.
I just watched a segment on FB with Julian Fellowes writer of Downtown Abbey who had his tremor treated successfully with a brain procedure in UK, not surgery. He was expressing that few people knew about treatment and he wanted to spread the word. I am following him in case my case gets unmanageable or my children inherit this. My dad suffered greatly from shaking most of his adult life, but particularly when he was older.
@2life6 I do believe if it was noninvasive it is ultra sound treatment. A friend of mine is having it done at WVU in May. I asked my neurologist about it 7 years ago and he said it was not refined enough back then. But now the Medical facilities of the University of Pittsburgh are performing it so they must have refined it more. I believe also that you have to prove that none of the medications they are treating ET with are working on you. And I know they have to shave your head for the procedure.
I was diagnosed with familial essential tremors in July 2024 (my dad and that side of the family had it). I am 54. It does get worse as you age. My doctor joked and said I will see you in ten years. So, for me, I can manage on my own without medications. Anxiety makes it worse, and caffeine makes it worse, so I cut out coffee, which seems to help, and I switched to tea, but eventually I will need to cut all caffeine. I notice it more with exercising and holding posture, but I just need to accept that or take medication. I ruled out other things that can cause shaking before I went to a neurologist. It is frustrating because so many conditions can cause shaking. We don't have a comprehensive testing system in the US where you can rule out everything. Unless you are an executive, of course! For me, knowing and knowing how to treat something is better than not knowing, but everyone is different in that way. If it were me, I would get tested for Parkinson's because that's another progressive condition, but there are medications that reduce the tremors. Good luck.
@mclaughlinkaren I have Et also and it started when I was in my early 40's and I'm now 74. You are right, caffeine does make it worse, many cold meds and inhalers make it worse. I haven't gotten to the point where I have to take meds and would like to avoid them because of the side effects. They say it is a form of Parkinson's. But with Parkinson's you get a slow shuffling gate, when you try to write your writing ends up in one corner of the paper and very small. I have a friend with Parkinson's and I don't have any of her symptoms. I know this isn't a cure all, but if I'm out and eating in public I have found a glass of wine will settle my hands just enough that I can eat with out my silverware shaking all over the place. I also have it in my jaw and have trouble drinking out of glass or cup so I use a straw.
Same here. The Primidone seemed to help but not totally. Then oddly enough and I do not know why…..my meds were changed. I went from Metoprolol to Propranolol. I swear that I am steadier now than I have ever been. No shakes what so ever. I do things like the rest of us that require steady hands and focus. For a very longtime and most of my career I had the shakes(tremors). For the last couple of months it has been unbelievable to be without the tremors. We are not alone. A lot of my friends have tremors and they do not address it. Just live with it and laugh about it. I wish I could be so excepting. We need each other. This journey is one none of us chose.
Hiya I’m Dave from Pa: I had ET for years The meds helped but eventually the shaking was so bad I couldn’t function. The drs did deep brain stimulation and the shaking is gone. I can use a folk, a screwdriver and shave again. I can’t thank the neuro team enough for giving me back my life
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Did they say what type of tests they are running that takes a whole day. I had the nuclear test that took 5 hours.
No, they haven't said what type of tests they will do. I hope that they will send me more information closer to the test date which is in February.
I was diagnosed with familial essential tremors in July 2024 (my dad and that side of the family had it). I am 54. It does get worse as you age. My doctor joked and said I will see you in ten years. So, for me, I can manage on my own without medications. Anxiety makes it worse, and caffeine makes it worse, so I cut out coffee, which seems to help, and I switched to tea, but eventually I will need to cut all caffeine. I notice it more with exercising and holding posture, but I just need to accept that or take medication. I ruled out other things that can cause shaking before I went to a neurologist. It is frustrating because so many conditions can cause shaking. We don't have a comprehensive testing system in the US where you can rule out everything. Unless you are an executive, of course! For me, knowing and knowing how to treat something is better than not knowing, but everyone is different in that way. If it were me, I would get tested for Parkinson's because that's another progressive condition, but there are medications that reduce the tremors. Good luck.
I would like to share an experience I've just had. I've had ET for 30 years, mild at first, gets worse as I age but not bad enough for meds yet and I am 74. But I recently had out patient surgery. Came home with the chills which progressed over a couple hours to sever chills. Temperature was only 99.6. And this is what I want to tell you out there with ET. My chills affected my tremors so badly I was shaking severely, couldn't use a phone or hold anything. Tylenol finally stopped the chills which stopped the shaking. But it was very scary. When I talked to my gastro Dr. that did the surgery, he said chills after an anesthesia is not unusual. I haven't spoken to my neurologist about it yet. Just thought I'd give you all a heads up.
I just watched a segment on FB with Julian Fellowes writer of Downtown Abbey who had his tremor treated successfully with a brain procedure in UK, not surgery. He was expressing that few people knew about treatment and he wanted to spread the word. I am following him in case my case gets unmanageable or my children inherit this. My dad suffered greatly from shaking most of his adult life, but particularly when he was older.
@2life6 Welcome to Mayo Connect, where people share their health journeys and try to help one another along the way. I read this with interest, because I am a third-generation (to my knowledge) tremor sufferer, as well as having Parkinson's Disease spanning 3 generations on both sides of my family. So far I am managing my tremors with primodone in the morning and a single alcoholic beverage in the early evening, but the severity varies from day to day.
The procedure you learned about is called "Deep Brain Stimulation." It has been used for Parkinson's Disease, some Essential Tremors and some forms of epilepsy for a number of years.
The person is placed under aware sedation, and the affected part of the brain is stimulated with a probe. If the tremor stops or is substantially reduced, a permanent probe and stimulation device are implanted. Usually, the patient must fail all anti-tremor medications and have function-altering tremors before being considered for this procedure.
Here is what Mayo Clinic has to say:
https://www.mayoclinic.org/tests-procedures/deep-brain-stimulation/about/pac-20384562
And here is a "deep dive" into tremor treatment and its long-term effectiveness:
https://pmc.ncbi.nlm.nih.gov/articles/PMC8397098/
@2life6 I do believe if it was noninvasive it is ultra sound treatment. A friend of mine is having it done at WVU in May. I asked my neurologist about it 7 years ago and he said it was not refined enough back then. But now the Medical facilities of the University of Pittsburgh are performing it so they must have refined it more. I believe also that you have to prove that none of the medications they are treating ET with are working on you. And I know they have to shave your head for the procedure.
@mclaughlinkaren I have Et also and it started when I was in my early 40's and I'm now 74. You are right, caffeine does make it worse, many cold meds and inhalers make it worse. I haven't gotten to the point where I have to take meds and would like to avoid them because of the side effects. They say it is a form of Parkinson's. But with Parkinson's you get a slow shuffling gate, when you try to write your writing ends up in one corner of the paper and very small. I have a friend with Parkinson's and I don't have any of her symptoms. I know this isn't a cure all, but if I'm out and eating in public I have found a glass of wine will settle my hands just enough that I can eat with out my silverware shaking all over the place. I also have it in my jaw and have trouble drinking out of glass or cup so I use a straw.
Same here. The Primidone seemed to help but not totally. Then oddly enough and I do not know why…..my meds were changed. I went from Metoprolol to Propranolol. I swear that I am steadier now than I have ever been. No shakes what so ever. I do things like the rest of us that require steady hands and focus. For a very longtime and most of my career I had the shakes(tremors). For the last couple of months it has been unbelievable to be without the tremors. We are not alone. A lot of my friends have tremors and they do not address it. Just live with it and laugh about it. I wish I could be so excepting. We need each other. This journey is one none of us chose.
Hiya I’m Dave from Pa: I had ET for years The meds helped but eventually the shaking was so bad I couldn’t function. The drs did deep brain stimulation and the shaking is gone. I can use a folk, a screwdriver and shave again. I can’t thank the neuro team enough for giving me back my life
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