My Doctor has diagnosed me with Essential Tremors. This is much better than having Parkinson’s. I have been taking Primidone for the tremors for about 6 years. I’m interested in hearing from anyone who may have been diagnosed with Essential Tremor but later was diagnosed with Parkinson’s! And can anyone comment on what they think about being on Primidone for 7 years?
I would ask if the Primidone is actually working for you as I was given a low dose of that and it made me drunk walk and didn't help at all. So, I have signed up for a number of studys as there really isn't a cure for them. I have not been diagnosed with Parkinson's, but I do have MS.
I would ask if the Primidone is actually working for you as I was given a low dose of that and it made me drunk walk and didn't help at all. So, I have signed up for a number of studys as there really isn't a cure for them. I have not been diagnosed with Parkinson's, but I do have MS.
I was diagnosed with essential tremor when I was 24 years old. Today I am 59. I take propranolol (beta blocker), primidone and frontal (anxiolytic). With advancing age, tremor, even with all this medication, has worsened. I'm trying a new alternative which is HIFU (High Focused Ultrasound). The treatment consists of the emission of a focused ultrasound performing a unilateral strategic injury in dysfunctional pathways in certain diseases, in this case Essential Tremor.
I was diagnosed with essential tremor when I was 24 years old. Today I am 59. I take propranolol (beta blocker), primidone and frontal (anxiolytic). With advancing age, tremor, even with all this medication, has worsened. I'm trying a new alternative which is HIFU (High Focused Ultrasound). The treatment consists of the emission of a focused ultrasound performing a unilateral strategic injury in dysfunctional pathways in certain diseases, in this case Essential Tremor.
Thank you for posting this. I also take propranolol for tremors but it doesn't work either. I have read about it and was actually going to do that ultrasound procedure. They do it at Barrow here in Phoenix. The reason I did not is because I have AFib and you could actually wind up with a bleed in your brain as well as doing a tube MRI is not my favorite thing to do at all. but I'm going to have a procedure done to take care of the AFib and possibly after that I might look into it. I'm not exactly sure where you are located but I know they have several different places that they can do that procedure. There have been several other studies that I am looking into for essential tremors. I basically like doing them to help others. so I wish you luck with that ultrasound treatment. and yes after a while there's nothing that will fix it. but the videos that I have seen it's miraculous what the ultrasound can do but they can only do one extremity at a time. which would be fine if at least one of my hands would work.
I have been plagued with what my neurologist claims is Benign Essential Tremor. I say claims as she has never ran any tests and just looked at my shaking hands.
It all started when doctors put me on Cymbalta which triggered so many side effects I had to come off it for fear of serotonin syndrome. They then ran a pharmacokinetic gene test (through Tempus) that looks at how your genes metabolize medications and sure enough, it recommended I have a reduced dose of Cymbalta as i'm a poor metabolizer of the CYP2D6 gene and I had been on the max dose. I have been off Cymbalta for 1.5years now but all the different medicines they put me on at the same time (muscle relaxers, pain killers, ADHD meds, Cymbalta, nerve blocks) have damaged my body so badly and left me with tremors that only continue to worsen with each year. I have some doctors say "meds won't cause tremors", then I had another doctor say "yes Cymbalta can cause involuntary tremors that are often permanent".
As of right now I need to find a new neurologist as mine only wants to keep injecting me with Botox for Migraines (for my migraines) and when I told her I want to 'pause' the Botox so Mayo could assess my condition, she told me to just call her back when I'm ready to make another Botox appointment. When I asked if I should make a regular visit with her, she said "no", just call when you're ready for more Botox. For reference, I feel the Botox every 3 months since mid 2021 has caused much of my health symptoms including cervical instability. My point is, consider medications you're on, or have been on as a possible cause for tremors if you do not have a solid answer for why you have developed them.
mmcfppd,
I am 81 so I am not so sure they can give it to me, I was just reading about the ultra
sound one, where you don't have to shave your head. I know there are side effects to
both of these procedures.
@marcia115 you still have to shave your hair, cause it can catch fire. that is what I'm told, nothing last forever, they don't no how long it will last!
I have the same thing. It's called Spasmodic Torticollis and my neck turned Left and Retro. The pain was awful and I had tremors and lots of pain. It's a movement disorder that originates in the basal ganglia of the brain. Many times it's inherited, trauma, or psychotropic drugs canl cause it.
@oakbourne Yes. I have the same - Cervical Dystonia. I’ve posted before. Symptoms started shortly after receiving the first “emergency” Covid vaccine from Pfizer (2021). I had just retired and was looking forward to that stage of my life. Have a fantastic and caring Neurologist who heads up the Chase Family Movement & Disorders Clinic in CT. My system is extremely sensitive to meds. Tried several combinations of muscles for Botox injections every 3 months. Took a break in 2024 to try meds: Clonazepam then Carbidopa-Levodopa (usually for Parkinson’s tremors) as a trial. They are supposed to calm the brain, per se, but they don’t stop the continual tightness/pain from the jerking. My head wants me to turn left- any other direction causes tremors. Stress is a major trigger, which is an ironic yet obvious statement. When you have this, you don’t have tolerance for anything. Triggers are everywhere and can cause exhaustion. I try all the tricks, but they don’t always work. Can’t lay on the back of my head (think sleeping or riding in a car).
Have done so much research on the brain, basal ganglia, nervous system, and cells, in general. Have followed several hospitals’ approaches and their research here and abroad.
I may pursue a second opinion from a referred person in Boston. My neurologist is just hoping the doctor could review everything and possibly collaborate on treatments. )I feel like an anomaly)
If Carbidopa-Levodopa is not truly helping, I’m going back to Clonazepam and trying Botox injections to deeper muscles we haven’t tried, as yet.
I’m happy that DBS worked for someone, but I’ve been advised to wait/watch because they don’t feel it’s quite “there” for brain treatment. There is a new procedure which utilizes an ultrasound guided laser treatment that helped a man with terrible hand tremors.
These two procedures are still too new for me; although, I’m discovering that the medical community is “pushing” DBS. I think they could do better. It’s like having a pacemaker in the brain from appearances. (Please know that I am happy it helped someone, though).
It’s discouraging.
For those just starting out, I can share that numerous blood tests and MRIs were done to rule out several major diseases (have good insurance because the blood tests can add up). I’ve had 2 major falls (ice skating/ slipping on a wet tile floor) that impacted my head momentarily. I truly think the COVID shot unearthed something (it does involve nRNA in the brain).
I’ll let you know if going back to Botox w/new muscle involvement helped. Good luck to everyone.
@oakbourne Yes. I have the same - Cervical Dystonia. I’ve posted before. Symptoms started shortly after receiving the first “emergency” Covid vaccine from Pfizer (2021). I had just retired and was looking forward to that stage of my life. Have a fantastic and caring Neurologist who heads up the Chase Family Movement & Disorders Clinic in CT. My system is extremely sensitive to meds. Tried several combinations of muscles for Botox injections every 3 months. Took a break in 2024 to try meds: Clonazepam then Carbidopa-Levodopa (usually for Parkinson’s tremors) as a trial. They are supposed to calm the brain, per se, but they don’t stop the continual tightness/pain from the jerking. My head wants me to turn left- any other direction causes tremors. Stress is a major trigger, which is an ironic yet obvious statement. When you have this, you don’t have tolerance for anything. Triggers are everywhere and can cause exhaustion. I try all the tricks, but they don’t always work. Can’t lay on the back of my head (think sleeping or riding in a car).
Have done so much research on the brain, basal ganglia, nervous system, and cells, in general. Have followed several hospitals’ approaches and their research here and abroad.
I may pursue a second opinion from a referred person in Boston. My neurologist is just hoping the doctor could review everything and possibly collaborate on treatments. )I feel like an anomaly)
If Carbidopa-Levodopa is not truly helping, I’m going back to Clonazepam and trying Botox injections to deeper muscles we haven’t tried, as yet.
I’m happy that DBS worked for someone, but I’ve been advised to wait/watch because they don’t feel it’s quite “there” for brain treatment. There is a new procedure which utilizes an ultrasound guided laser treatment that helped a man with terrible hand tremors.
These two procedures are still too new for me; although, I’m discovering that the medical community is “pushing” DBS. I think they could do better. It’s like having a pacemaker in the brain from appearances. (Please know that I am happy it helped someone, though).
It’s discouraging.
For those just starting out, I can share that numerous blood tests and MRIs were done to rule out several major diseases (have good insurance because the blood tests can add up). I’ve had 2 major falls (ice skating/ slipping on a wet tile floor) that impacted my head momentarily. I truly think the COVID shot unearthed something (it does involve nRNA in the brain).
I’ll let you know if going back to Botox w/new muscle involvement helped. Good luck to everyone.
@pmhpesp5 I wish there was more concentration of the entire pathology of this disease rather than following the initial protocol of Botox injections then meds. What truly causes the misfiring in the brain (etiology)?! The brain is so complex and, hence, difficult to completely analyze all scenarios. God Bless the people in clinical trials and at Neurolink.
I also took Propanolol - it lowers your blood pressure. Since mine is regularly low but safe, I advised the APRN to consider the consequences of her suggesting to up the dosage (good gravy).
Do you have pain? I have pain, pulling and tremors. I think the worse is the pulling. I had to get drunk and take Klonopin on my wedding day. My neck was pulling really bad and I could hardly walk down the aisle. I just kept on drinking Champagne. I hate this disease. It has ruined my life and I came out of the womb with this mess.
@oakbourne Have to laugh because with my cervical dystonia, drinking did temporarily help. (by the way Clonazepam and Klonopin are the same thing for those reading our replies). I had to stop drinking with Carbidopa-Levodopa because I got terrible vertigo. I know I shouldn’t be drinking anything, but that one drink took the pain away. Ugh. Something weird,as well, my tremors completely disappeared while hiking at high altitudes (> 9,000) in Colorado. It was heaven. When I came back down to around 6,000, they returned slightly. Back in CT, they are full-blown. We had already been in Colorado for three weeks, so got used to altitude change. Obviously, you don’t want to fool around with oxygen deprivation, but this may be a research hypothesis.
My tremor sometimes rouses the attention of people wherever I am, and some people find it necessary to make a comment, like "are you alright?" or "do you need help bringing the groceries to the car?" I resent these comments, considering I am an extremely physically fit individual who can hike 10 miles, lift heavy weights and practice difficult yoga, and the comments are made by people who are probably not as fit as I am. I regard this as an intrusion and wish it would not happen. What should my response be? I sometimes say "why are you asking?" but they never come out with "because you are shaking", or I say "I'm fine, and how are you?" although I really would like to say "that's not none of your business" or something to that effect. I'm sure I am not alone!
@ingdom I understand your feelings. I actually just say that I have cervical dystonia and am learning to deal with it. I appreciate your offer, but I’m fine with functioning independently.
Hang in there. It is upsetting.
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I would ask if the Primidone is actually working for you as I was given a low dose of that and it made me drunk walk and didn't help at all. So, I have signed up for a number of studys as there really isn't a cure for them. I have not been diagnosed with Parkinson's, but I do have MS.
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1 ReactionI was diagnosed with essential tremor when I was 24 years old. Today I am 59. I take propranolol (beta blocker), primidone and frontal (anxiolytic). With advancing age, tremor, even with all this medication, has worsened. I'm trying a new alternative which is HIFU (High Focused Ultrasound). The treatment consists of the emission of a focused ultrasound performing a unilateral strategic injury in dysfunctional pathways in certain diseases, in this case Essential Tremor.
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Like -
Helpful -
Hug
2 ReactionsThank you for posting this. I also take propranolol for tremors but it doesn't work either. I have read about it and was actually going to do that ultrasound procedure. They do it at Barrow here in Phoenix. The reason I did not is because I have AFib and you could actually wind up with a bleed in your brain as well as doing a tube MRI is not my favorite thing to do at all. but I'm going to have a procedure done to take care of the AFib and possibly after that I might look into it. I'm not exactly sure where you are located but I know they have several different places that they can do that procedure. There have been several other studies that I am looking into for essential tremors. I basically like doing them to help others. so I wish you luck with that ultrasound treatment. and yes after a while there's nothing that will fix it. but the videos that I have seen it's miraculous what the ultrasound can do but they can only do one extremity at a time. which would be fine if at least one of my hands would work.
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Like -
Helpful -
Hug
2 ReactionsI have been plagued with what my neurologist claims is Benign Essential Tremor. I say claims as she has never ran any tests and just looked at my shaking hands.
It all started when doctors put me on Cymbalta which triggered so many side effects I had to come off it for fear of serotonin syndrome. They then ran a pharmacokinetic gene test (through Tempus) that looks at how your genes metabolize medications and sure enough, it recommended I have a reduced dose of Cymbalta as i'm a poor metabolizer of the CYP2D6 gene and I had been on the max dose. I have been off Cymbalta for 1.5years now but all the different medicines they put me on at the same time (muscle relaxers, pain killers, ADHD meds, Cymbalta, nerve blocks) have damaged my body so badly and left me with tremors that only continue to worsen with each year. I have some doctors say "meds won't cause tremors", then I had another doctor say "yes Cymbalta can cause involuntary tremors that are often permanent".
As of right now I need to find a new neurologist as mine only wants to keep injecting me with Botox for Migraines (for my migraines) and when I told her I want to 'pause' the Botox so Mayo could assess my condition, she told me to just call her back when I'm ready to make another Botox appointment. When I asked if I should make a regular visit with her, she said "no", just call when you're ready for more Botox. For reference, I feel the Botox every 3 months since mid 2021 has caused much of my health symptoms including cervical instability. My point is, consider medications you're on, or have been on as a possible cause for tremors if you do not have a solid answer for why you have developed them.
-
Like -
Helpful -
Hug
4 Reactions@marcia115 you still have to shave your hair, cause it can catch fire. that is what I'm told, nothing last forever, they don't no how long it will last!
@oakbourne Yes. I have the same - Cervical Dystonia. I’ve posted before. Symptoms started shortly after receiving the first “emergency” Covid vaccine from Pfizer (2021). I had just retired and was looking forward to that stage of my life. Have a fantastic and caring Neurologist who heads up the Chase Family Movement & Disorders Clinic in CT. My system is extremely sensitive to meds. Tried several combinations of muscles for Botox injections every 3 months. Took a break in 2024 to try meds: Clonazepam then Carbidopa-Levodopa (usually for Parkinson’s tremors) as a trial. They are supposed to calm the brain, per se, but they don’t stop the continual tightness/pain from the jerking. My head wants me to turn left- any other direction causes tremors. Stress is a major trigger, which is an ironic yet obvious statement. When you have this, you don’t have tolerance for anything. Triggers are everywhere and can cause exhaustion. I try all the tricks, but they don’t always work. Can’t lay on the back of my head (think sleeping or riding in a car).
Have done so much research on the brain, basal ganglia, nervous system, and cells, in general. Have followed several hospitals’ approaches and their research here and abroad.
I may pursue a second opinion from a referred person in Boston. My neurologist is just hoping the doctor could review everything and possibly collaborate on treatments. )I feel like an anomaly)
If Carbidopa-Levodopa is not truly helping, I’m going back to Clonazepam and trying Botox injections to deeper muscles we haven’t tried, as yet.
I’m happy that DBS worked for someone, but I’ve been advised to wait/watch because they don’t feel it’s quite “there” for brain treatment. There is a new procedure which utilizes an ultrasound guided laser treatment that helped a man with terrible hand tremors.
These two procedures are still too new for me; although, I’m discovering that the medical community is “pushing” DBS. I think they could do better. It’s like having a pacemaker in the brain from appearances. (Please know that I am happy it helped someone, though).
It’s discouraging.
For those just starting out, I can share that numerous blood tests and MRIs were done to rule out several major diseases (have good insurance because the blood tests can add up). I’ve had 2 major falls (ice skating/ slipping on a wet tile floor) that impacted my head momentarily. I truly think the COVID shot unearthed something (it does involve nRNA in the brain).
I’ll let you know if going back to Botox w/new muscle involvement helped. Good luck to everyone.
@pmhpesp5 I wish there was more concentration of the entire pathology of this disease rather than following the initial protocol of Botox injections then meds. What truly causes the misfiring in the brain (etiology)?! The brain is so complex and, hence, difficult to completely analyze all scenarios. God Bless the people in clinical trials and at Neurolink.
I also took Propanolol - it lowers your blood pressure. Since mine is regularly low but safe, I advised the APRN to consider the consequences of her suggesting to up the dosage (good gravy).
@oakbourne Have to laugh because with my cervical dystonia, drinking did temporarily help. (by the way Clonazepam and Klonopin are the same thing for those reading our replies). I had to stop drinking with Carbidopa-Levodopa because I got terrible vertigo. I know I shouldn’t be drinking anything, but that one drink took the pain away. Ugh. Something weird,as well, my tremors completely disappeared while hiking at high altitudes (> 9,000) in Colorado. It was heaven. When I came back down to around 6,000, they returned slightly. Back in CT, they are full-blown. We had already been in Colorado for three weeks, so got used to altitude change. Obviously, you don’t want to fool around with oxygen deprivation, but this may be a research hypothesis.
@ingdom I understand your feelings. I actually just say that I have cervical dystonia and am learning to deal with it. I appreciate your offer, but I’m fine with functioning independently.
Hang in there. It is upsetting.