Derek1987 Posted November 7, 2019 Report Share Posted November 7, 2019 I have always tried to describe myself as if im floating in a boat sometimes. I can feel this way in any position. I've had muscle twitches all over my body for the past couple of months. Not sure if related. But i physically saw myself swaying back and forth in the mirror. I also feel like i am losing my balance sometimes. Starting to wonder if its parkinsons disease or something or is it just a pots thing. Someone on another group mentioned MdDS. Anybody deal with these symptoms? Quote Link to comment Share on other sites More sharing options...
Pistol Posted November 7, 2019 Report Share Posted November 7, 2019 @Derek1987 - I sway back an forth like that when my orthostatic intolerance gets the best of me. It is also a symptom of presyncope for me. I believe it can happen when you are dizzy - without being aware of the dizziness ( most likely because you are so accustomed to it ). Quote Link to comment Share on other sites More sharing options...
Guest ScottS Posted November 8, 2019 Report Share Posted November 8, 2019 Ah yes, that seasick (swaying to and fro) feeling is all too familiar to me. I too tend to experience it when OI is having its way. My triggers include having had a bad or rough night's sleep and having done too much (been on my feet) for too long the day before. Deep breathing (via my YQi practice) can help settle things as too can hydrating, especially when combined with a cup of broth. Quote Link to comment Share on other sites More sharing options...
KiminOrlando Posted November 8, 2019 Report Share Posted November 8, 2019 I sway. I don't know why and nobody seems worried about it. I wish it would stop. Quote Link to comment Share on other sites More sharing options...
misseb Posted November 8, 2019 Report Share Posted November 8, 2019 Gawd. Yes. Like Im on a boat. Sometimes I'm stumbling around too. Yesterday I had a panic as I thought my car was rolling forward while parked but it was me still moving in the previous flow of traffic !!! Quote Link to comment Share on other sites More sharing options...
p8d Posted November 8, 2019 Report Share Posted November 8, 2019 Oh yeah. I do this routinely at my neuro orthostatic vitals check after being upright a few minutes. I think because they make me stand still and normally I would be moving about at home so don’t notice it as much except in the mornings. I have often described the feeling like on a boat when they ask about dizziness and light headedness. I agree it’s probably OH but I get when my BP is up due to sympathetic overdrive. Quote Link to comment Share on other sites More sharing options...
Pistol Posted November 8, 2019 Report Share Posted November 8, 2019 @p8d - same here. I get a certain uneasiness with high BP and another with low BP. Swaying from side to side can happen - for me - from either scenario but I usually also get chest pain with high BP, which helps me to differentiate. Quote Link to comment Share on other sites More sharing options...
yogini Posted November 9, 2019 Report Share Posted November 9, 2019 I feel like I am swaying slightly from side to side (or up and down) even though I'm not physically moving at all. This has historically been one of my worst symptoms. It was really scary and confusing at first - and it was constant. Now it only happens sometimes and I am so used to it that I barely notice. This symptom definitely got better as my dysautonomia improved and exercise (even practicing walking) helped a lot. Check with your doctor but there is a good chance this symptom is dysautonomia and not another condition. Quote Link to comment Share on other sites More sharing options...
p8d Posted November 10, 2019 Report Share Posted November 10, 2019 @Pistol I think it’s interesting that you get chest pain (not palpitations?) from hypertension. I get really bad palpitations with OH. I guess what’s the difference for you? Quote Link to comment Share on other sites More sharing options...
Pistol Posted November 10, 2019 Report Share Posted November 10, 2019 @p8d - when you mention OH - do you mean orthostatic HYPOtension? In my case I used to get palpitations with either scenario but the chest pain is usually with the hypertension ( I have Prinzmetal angina which causes spasms of the coronary arteries leading to chest pain ). This is due to the severe general vasoconstriction caused by the ANS dumping norepinephrine. I do get Hypotensive at times as well - this being caused by sympathetic withdrawal ( as I understand it ). Palpitations in my case mean the sympathetic system is in overdrive - but I am on such high doses of Carvelidol that I barely get them anymore. ( Thankfully so! ). Quote Link to comment Share on other sites More sharing options...
p8d Posted November 11, 2019 Report Share Posted November 11, 2019 @Pistol yes, I mean hypotension. My BP does this lovely dance-higher supine, drops 20-30 on immediate stand, rises for ~10-15 minutes then starts to fall. I have no idea where this puts me in terms of type. I have elevated norepinephrine so definitely hyper but with Orthostatic hypotension and hypovolemia. I have recently noticed my BP drops ~20 points after a meal which I never noticed before in 5 years. Strangely carvedilol seems to make my palpitations worse when hypotension. Ain’t this all fun 😉 Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted November 15, 2019 Report Share Posted November 15, 2019 On 11/7/2019 at 5:49 PM, Derek1987 said: I have always tried to describe myself as if im floating in a boat sometimes. I can feel this way in any position. I've had muscle twitches all over my body for the past couple of months. Not sure if related. But i physically saw myself swaying back and forth in the mirror. I also feel like i am losing my balance sometimes. Starting to wonder if its parkinsons disease or something or is it just a pots thing. Someone on another group mentioned MdDS. Anybody deal with these symptoms? For me it's more of a bobbing sensation back and forth, mostly felt whenever I am reclined or lying down with my back pressing against something. It's almost like a beat my body is moving to. Perhaps worse right after sitting down after small exertions. But I always feel like I'm moving subtly, never still. Often feels in tune with the heartbeat, but sometimes more erratic or much faster. The boat analogy is interesting, but I wouldn't describe it as floating, more rocking. I've also gotten the twitches for years. One of my first symptoms. Comes and goes as do the involuntary muscle jerks when lying down. These seem to come in waves and then disappear for long periods of time. Probably worse when stress is worse. I could be wrong, but I believe Parkinsons starts as a tremor or unsteadiness in the extremities? Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted November 17, 2019 Report Share Posted November 17, 2019 Do people end up extra fidgety with this as well. As this particular set of symptoms have been really difficult this weekend, I'm realizing that I'm constantly doing something with my arms or hands with all this subtle rocking/bobbing back and forth. Wonder if this is more an adrenaline issue than what some people are talking about here. Quote Link to comment Share on other sites More sharing options...
KiminOrlando Posted November 17, 2019 Report Share Posted November 17, 2019 1 hour ago, MTRJ75 said: Do people end up extra fidgety with this as well. Yes. I started taking melatonin and it helped at night. Oddly, it doesn't make me tired. Thinking of trying it during the day too. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted November 17, 2019 Report Share Posted November 17, 2019 Melatonin is a God send in helping me sleep. I'm only taking 5 mg per night (and have been on and off for a few years), but trying not to take it every night because I'm not sure of the science behind long term use. I'm not sure if it would help with any of this. Besides, ideally there would be a non-drowsy solution. I already have enough trouble getting up and around. Quote Link to comment Share on other sites More sharing options...
Peter Charlton Posted December 2, 2019 Report Share Posted December 2, 2019 This is the one of the main remaining side effects I have from taking beta blockers for a while three years ago, I notice it is worst when I do not have a visual reference point, standing in the sea and looking down is quite difficult, at work people seeing me walking asked my manager if I was drunk. I also notice that it is worst when it is cold, so wonder if blood viscosity thickens when it is colder? My inquiry though relates to the criteria for having OH. When I was first tested at Queens Square, my blood pressure fell more than 20, but when I went for a tilt table test and also my last visit to a neurologist saw my blood pressure drop by only 17, hence I dont get a diagnosis of OH but a determination to blame my symptoms on my poor childhood of over 50 years ago, the symptoms of which only manifested themselves on the very day I started taking beta blockers. So what happens regarding OH, can your blood pressure drop by 19 points and you are perfectly fine but a drop of a single point more and you fall over? I would have thought it would be more gradual, so that my last measued drop of 17 points might not be serious enough to cause concern, ie I dont feel like I am about to faint, but maybe its enough to exp-lain the drunk zombie un-balanced feeling I get? Quote Link to comment Share on other sites More sharing options...
WickedMindz Posted December 28, 2019 Report Share Posted December 28, 2019 Yes I have this. Literally have it right now while typing this to you. Quote Link to comment Share on other sites More sharing options...
keenly Posted March 10, 2021 Report Share Posted March 10, 2021 On 11/7/2019 at 10:49 PM, Derek1987 said: I have always tried to describe myself as if im floating in a boat sometimes. I can feel this way in any position. I've had muscle twitches all over my body for the past couple of months. Not sure if related. But i physically saw myself swaying back and forth in the mirror. I also feel like i am losing my balance sometimes. Starting to wonder if its parkinsons disease or something or is it just a pots thing. Someone on another group mentioned MdDS. Anybody deal with these symptoms? I have this now. Swaying and being wobbly, it is horrible. Quote Link to comment Share on other sites More sharing options...
MikeO Posted August 6, 2021 Report Share Posted August 6, 2021 I get the swaying as well and is different than when I am hypotensive. As i read into it this has more to do with you peripheral system. Where the swaying gets me the most is when i close my eyes like taking a shower i will start to get off balance. There is a good test for this "Romberg's test" Quote Link to comment Share on other sites More sharing options...
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