smiles Posted June 6, 2017 Report Share Posted June 6, 2017 I've had dysautonomia for about 12 years and have recently been as stable as I've ever been. Then out of nowhere, new symptom! Upper body tremors. Mostly in my head but it affects my arms if it keeps going. They are quick, rhythmic, uncontrollable movements. It is only if I'm standing or sitting. So it's postural related. It's not all the time. Happens more in the mornings, less in the afternoons and evenings. (My mornings I don't function well anyway and by afternoon and evenings I'm walking and functioning pretty good.) It stops (or I don't notice it) when I'm moving. So if I move or change positions I can sometimes get it to stop. They also stop if I lay down. I have no other autonomic symptoms associated with them, therefore my autonomic Dr. doesn't think it's related to dysautonomia. I went to a neurologist and she said it's enhanced physiological tremors. They are what everyone has that is usually so minor that no one sees it. My tremors are getting worse and I'm not sure that is really what it is. I thinking more autonomic since it only happens when I'm upright. So, anyone have any ideas? Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted June 6, 2017 Report Share Posted June 6, 2017 Are you still on Lamictal? I had tremory weirdness in my head/neck and radiating down my arms when I was on Lamictal Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted June 7, 2017 Report Share Posted June 7, 2017 I was reading about other topics and stumbled across Primary Orthostatic Tremor. Made me think of you! Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted June 7, 2017 Report Share Posted June 7, 2017 Do you have EDS? My oldest had a whole host of neurological symptoms that all began with tremors that radiated from her neck on the left side. It took us a year to figure out that she has cervical instability and is going to have a spinal fusion in a few weeks. It's weak muscles and loose ligaments from the EDS. There wasn't a doctor in the lot that could figure it out. Finally found one at Stanford who knew right what was going on as soon as my daughter walked through the door. Do you have any other strange symptoms? New medications? Quote Link to comment Share on other sites More sharing options...
Greyhound Posted June 7, 2017 Report Share Posted June 7, 2017 I'm not diagnosed with anything yet but I think I might have POTS. When my symptoms are particularly bad I can shake all over a bit like shivering but I'm not cold. This can happen lying down or standing up. Quote Link to comment Share on other sites More sharing options...
smiles Posted June 8, 2017 Author Report Share Posted June 8, 2017 Buffrockchick, I am still on Lamictal. Been on it for years now...(8 years maybe?) It keeps my seizure under control and I've never had any strange symptoms from it. So my assumption is that it is not that. But I'll definitely keep that in mind though. Primary Orthostatic Tremors effect the legs while standing. My legs are not effected. I've not started on any new meds and the Drs. say it's not a side effect from anything I'm currently on. DizzyGirls, I've wondered about EDS. I do not have the typical symptoms of it. I do however have issues with my right side and especially my right knee. The top part of my right knee will get swollen and painful when I do the slightest of exercise or different movements. Driving a car even sometimes bothers it. It's bad enough that I often wear a knee support while driving, exercising... It helps keep it supported which helps prevent an issue with it. So it does seem loose. I also have occasional swelling, pain, and redness in other joints that comes and goes. I may not have it for months then it may flare up and then go away. I've been told by Drs. that it is just part of getting older - I'm 55. But it's been going on for 10 yrs. About 15 yrs. ago I was tested for rheumatoid and I didn't have that. If I do have EDS it's a very slight case of it. I was trying to do exercises to try to strengthen my neck and upper back but haven't recently. Need to start that again to see if it helps. If it was a slight case of EDS who could help diagnose it or help with it? Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted June 9, 2017 Report Share Posted June 9, 2017 EDS can be diagnosed by any knowledgeable physician, but a lot of people get a diagnosis from a geneticist. My girls got their diagnosis from a neurologist at Stanford who specializes in Autonomic Disorders. My mom got a diagnosis from an endocrinologist she was seeing. She saw her stretchy skin, even though my mom is 73, she knows what it was supposed to feel like and knew that it was far to stretchy (even for that age). Some rheumatologists (especially in the UK) can diagnose, also. My youngest has trouble with her knee too. It started with one, now it's both. Has braces for both, but they are so weak. Had to climb stairs today (can't take elevator due to vertigo) and now she can hardly stand. Have you been tested for various autoimmune disorders? I know my mom has lupus, scleroderma, Sjogren's, and now they've found she has Dermatomyositis. Wasn't just a guess either, took a skin biopsy and showed textbook clinical symptoms also. Quote Link to comment Share on other sites More sharing options...
smiles Posted June 10, 2017 Author Report Share Posted June 10, 2017 Can you have just a slight case of EDS or is it an all or nothing type of diagnosis? Cuz I don't have many symptoms of it. No I haven't been tested for autoimmune diseases. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted June 11, 2017 Report Share Posted June 11, 2017 I'm sure I'm a carrier of EDS, maybe even have it, but the only thing I had was the fact that I was flexible. I could do the Chinese splits on a balance beam in high school! Makes me cringe now, though!! Not everybody has raging symptoms all the time. Quote Link to comment Share on other sites More sharing options...
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