Dr. You are an earth angel. I’ve had very similar symptoms of all tremors you have been talking about. Listening to you I feel it’s the ot tremors I have. It becomes worse when I’m in company because I become anxious and panic with fear. Because I think I’m going insane. Now that I have a better understanding of what’s happening to my body helps me deal with the symptoms on a more calm basis. This all started the week my mother passed away which is now 18 years ago. 😪 I have mentioned these symptoms to doctors over the years and it seems to fall on deaf ears. Thank you doctor for all your research you are putting into finding medical knowledge .🙏🙏🌈🌈🦋🦋🥰🥰😇😇🤙🤙🌻🌻
Thank you so much for your video, explains this disorder so well, I am so frustrated and so annoyed with this disorder, so many people just don't get that one can walk miles, but trying to stand at the kitchen sink whilst washing up, or standing chatting or standing a qué is so impossible Trying to explain to someone, who asks "What happens if you try standing still" Well, I can't, "What will happen if you do?" Well, I suppose the nerves go haywire, up and down through the spine, the causing the truncal muscles to spasm, eventually unable to to stand up in a straight position so the body begins to flail, try all I can and the only way it gets resolved is moving, pacing the floor, standing legs apart, bouncing on leg type movement... It's just crazy...
I just took in your lecture of POT dated 4 years ago. I am in Australia and it is the 25th July 24. Everything you spoke of is exactly what my present condition is.. I was diagnosed by Associate professor Robert Heard of North Gosford private hospital, central coast NSW. On the year 2008. I have been taking clonazepam and lyrica ever since my diagnosis. I mentioned the drug parapanol (excuse my spelling) to doctor heard and he had not heard of it. He did write me a prescription for it but told me not to get it just yet until he made further enquiries. He did not get back to me. My initial tests for the shakings were off the chart. It is most debilitating and prevents me from even doing the most simplest things like gardening. I get anxious and feelings of complete exhaustion brought on by any manual activity. Everything you say about this condition is correct. I will make further enquiries re the drug. I'm 79 old and I was around 60 old when diagnosed. I find your lectures to be excellent and easy to understand. Thanking you. Bruce Elder.
Thank you for putting stung this video. OT is a progressive disease. I relate it to the Vestibular problem Mal De Debarquement where you can not get your legs underneath you. Mine has progressed so far as to when I am sitting I will get the trunk and upper body oscillations as well. I agree there needs to be more studies and hopefully with a voice like yours it will become more recognized.
Wow! I am so happy to find this presentation, I have been suffering from these exact symptoms for about 2 years and am currently waiting to see a neurologist. I am going to find your FB page and others with regards to OT. Thanks again love from the UK.
Started in 2009. During A-Flutter (heart stuff). It is getting worse. Difficult to put in screws while standing, keyboards are a specific problem, and I swore off step ladders...
Hello Dr Sullivan. After more than 12 years I just got diagnosed with OT. I have ET as well, but it was diagnosed earlier. I visited several doctors and none could explain why I would shake like a flan. I got diagnosed and the neurologist left, so I had to research for another neurologist familiar with OT and my appointment is until December! A few months ago, on top of the tremors, I have the most excruciating pain in the knees and legs. It doesn’t matter if I walk, sit or stay standing. I’m living in pain, and nothing helps to relieve it. If you need a patient with OT or have questions, I am here. If I can help other patients, I would gladly be at your disposal
I started having tremors May 6th of this year and have been searching for answers! Neurologists are stumped so I have been referred to a movement specialist. I’ve had vertigo, vision and balance issues, vestibular migraines, and difficulty with emotional regulation all my life, and now I have a rhythmic tremor only when I stand upright. I’m on the west coast, could you recommend someone in Seattle I could see? I need help!
My mother is 83 and has been a T1 Diabetic since age 16. She, all three of her siblings and her father all have (or had) tremors. She was diagnosed with OT about 10 years ago and can currently only stand for seconds (even with all types of strategies such as shifting feet, walking in place and using a cane or walker.) She also has Grave's Disease. When she was being treated for the Grave's Disease, the treatment accidently destroyed her entire thyroid function instead of just lower her thyroid function back to a normal level. She is currently on thyroid replacement hormone as a result of the failed Grave's Disease treatment; she has an insulin pump and is classified as a Brittle for her lifelong T1 Diabetic BUT she feels like the OT is by far her most difficult diagnosis. I didn't realize vision might have such and impact on the OT. She had cataract surgery 20 or so years ago and claims that her vision is the only thing on her that works perfectly....but she has one eye adjusted for close up vision. Could that be contributing to the OT? Her symptoms did get progressively worse in the past 20 years. She did have shakiness before but that was only when her blood sugars were too low. I should say that her health is excellent for her age and if she could stand, she could get out more and even travel again.
my name is Craig Bennett and seems like I have ot but a definite diagnosis has not been given. It has only been a year but what you are explaining points toward OT. I have leg tremors, walking gait problems, arm tremors, chest tremors and neck tremors. I have been working with an neuro doctor for about a year. I will talk to my Dr Jhang and see what she says. Thank you,
If you're interested in learning more, Dr. Sullivan is hosting a live webinar with access to video replay on Aug. 14, 2020. Get all the details at www.icfyb.com/otwebinar/
I got cervical myelopathy from a car accident got smashed into metal railings with my car, 2 days after started having tremors and clonus, all 20 mris and 6 EMGS were normal, got urine retention, self catheterise 6 times a day and now the OT got worse in intensity after having anterior discectomy at c5 c6 3 months ago. I can barely walk... We are checking my brain now. OT started on my right leg and now it is both legs. No history in tremors. I am 42 years old
I also have problem in walking, my hip and knees have gear phenomenon, fatigue comes quick when walking short distances..... my brain literally screams "Sit down ffs"! Ím a 47 year old male
I was diagnosed by a GP with Parkinson’s. later by a neurologist with ET and later by another doctor with ET but more. My hands will have tremors, my head will have tremors, my feet continually move when I am sitting down and my legs will have tremors when I stand for a few minuets. Is it possible to have ET andPT at the same time. Doctors are having a hard time with a positive diagnosis.
Thanks a lot doctor for the usefull information. I am 63 years old and I suffer this symptom for the last almost a year. It apears more when I am nervous. The treating doctor says that it Parkinsonism and gave me Pexa XR and Rasajilin and still I am taking them. The doctor also advised to do excercise. I feel a little better, let say 40% improvement. But I feel that my problem is closer to Orthostatic Tremor rather that Pakinsonism. I also have a small issue with chosing word while I speak particularly during meetings etc. What could be your advice?
Just been diagnosed with O T. I grip with my toes !! It has been such a weird journey as gone undiagnosed because hard to describe what’s going on . Not sure what medication is right as have been on Xanax and not sure about another benzo !! Would love to know more please . Yes very informing .
I’ve found that medications for essential tremor do help for hand and head tremors but they do nothing for the OT. Don’t really understand why. Alcohol also can stop the tremors if only for a short while. But again this doesn’t do a thing for OT. Are they different conditions altogether? I really appreciate your discussion about how these conditions affect people. Thanks.
I was diagnosed with OT as a one-off ..couldn't stand for 2 weeks..had verbal lapses... have no symptoms now and would love to know if anyone else had same experience
I have this and been refereed to a movement neurologist but they have never called. I am a cashier and as long as I am holding to the register sometimes it is ok but evening time after work seems to get worse. I have a hard time walking sometimes if I not holding on to something, I have noticed if I spread my legs out walking it helps but wished so much I could get under a doctor that will help me
My husband was diagnosed with FTD but his cognitive abilities are not going down as they usually. He has had several bad falls plus he has had spikes in blood pressure. Now he has horrible tremors and cannot stand for more than 5 minutes and cannot take a shower and shave without going to bed for hours. The tremors are visible but he says they are internal as well.
Hi Joella, here is a link describing the drug. Please remember what I say here is not personal medical advice! You have to decide, with your personal doc, what is right for you: neurolrespract.biomedcentral.com/articles/10.1186/s42466-020-0050-0
I think the Medicine/ Rx you are asking about is spelled Propranolol.. I couldn’t take it as it kept me from sleeping. Others have better results w Propranolol. All the best to you. 🫶🏼
I am also having this problem since 5 years but i cant explain my condition but now because or your video i m able to know that i have internal full body t tremors .i m from a low medical facilities small village of pakistan . i have no resourses or tretment .can youplz help me to treat tremors at home such as any exercise .i m very upset .i cant sleep at night .i m n a miserable codition plz help m i will b greatful tu you and pray for u .
🫶🏼 Take care dear one. Is acupuncture, or even self-applied acupressure an option for you, relaxation music, or very gentle yoga videos.. there are so many free resources/ such as guided videos on You Tube. 💕
I have been diagnosed with OT and all you have said is so true. Unfortunately the medication isn't working very well for me and we have had talks of doing DBS which I'm unsure if to go ahead with. Thank-you for your talk about OT and hopefully it will be understood by more people.
I don't think we can all be put in the same category because there is such a variation of symptoms. I've had OT for well over 30 yrs., and had been on clonazepam for about 15 yrs., when a doctor told me it could affect cognitive function. This was at an OT study, and he suggested wean myself off of it since I didn't help me a whole lot anyway. When I got home, I immediately started reducing my dosage and haven't taken another dose since I weaned myself off. Prior to that, I had noticed that anxiety had been added to my list of medical problems; however, I didn't remember being diagnosed with it and I finally concluded that because I was taking clonazapam for my tremors, someone added it to my diagnoses. Since stopping the med has had no ill effects on me, I suggested that I did not have anxiety and it is no longer in my record! In addition, I've had regular cognitive testing done due to a clinical trial I participated in for over 10 yrs., and on the last one, I scored a perfect 30, so I question whether it's a definite conclusion to say that OT patients all have cognitive dysfunction! I think I have read all the test data out there, and from what I've found, the cause of OT is still not known. The available evidence most strongly favors the existence of a central oscillatory network, and involvement of the cerebellum and its connections. I suggest that more testing is necessary because thus far, we are a highly neglected group! I've gone to Mayo, The University of NE and the NIH and all I know is I definitely have OT! I've researched it for over 15 yrs., and although more data is available now, they really haven't learned a lot. Getting someone to fund a study of significance is non-existent and I've given up on finding answers in my lifetime, since I'm 73 now. Oh well, I always said, you only get one life, so you'd better live it to the best of your ability!
Hello Doctor, I am a gulf war Veteran, my unit was exposed to Sarin gas in 1991, i started feeling tremors inside which felt like anxiety, when i got back from my deployment, but no manifestation of tremors, just felt it inside, was diagnosed with vertigo, also went deaf in my right ear a month after i got back, "vestibular cochlear neuritis" that resolved after a month. have had falls over the years, now if stand, or kneel or dorsi-flex ankles, my legs shake uncontrollably at a higher freq/Hz. the VA Neurologist said they were "functional tremors" i feel this is a neurophysio disorder. please contact me with an email i can get more specific with my symptoms. this really seem like what I have.. L.D
