Derek1987 Posted March 6, 2020 Report Share Posted March 6, 2020 I know that ive been having a rocking sensation for several months now. I wasnt always like this. I also have probably 100 or more muscle twitches a day. Thats only been going on a few months. Ive asked my wife am i moving several times and she would say no. I got sick earlier from the rising temperatures. It was 73 in the house. Normal to others, not to me. Just now i was laying in bed on my side with elbow in the bed for support as i was about to eat. i could feel my head bobbing up and down. I feel like im on a boat right now with gentle waves. I asked my wife to see if im moving. I said im gonna hold my breath. And yes she saw me moving finally. I wouldnt want this to be parkinsons. I know there was some other illness with rocking back and forth. Anybody have this experience? Thoughts? Suggestions? I dont see my neuro till april. I freakin missed my appointment with him so now i have to wait longer. Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted March 6, 2020 Author Report Share Posted March 6, 2020 Just took my BP. 150/94. Granted i was upright and on my feet for 5 mins. I have hyper pots so my pressure increases. I layed down and immediately saw a lot of stars. Thats actually why i took my BP. To see if it was too low. My BP is always all over the place from minute to minute so i cant really rely on it to tell me anything other than my nervous system isnt working right. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 6, 2020 Report Share Posted March 6, 2020 When I have a severe bout with POTS I have this symptom. My head would literally bob up and down when I had severe POTS 17 years ago. I also remember a swaying motion when I would sit certain ways that would come and go. It was scary. I am not sure what causes it but I think just out of balance sympathetic activity. Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted March 6, 2020 Author Report Share Posted March 6, 2020 2 minutes ago, MomtoGiuliana said: When I have a severe bout with POTS I have this symptom. My head would literally bob up and down when I had severe POTS 17 years ago. I also remember a swaying motion when I would sit certain ways that would come and go. It was scary. I am not sure what causes it but I think just out of balance sympathetic activity. Thank you for sharing. It is comforting to know it just might be pots or whatever. Ill still keep stressing these events to my doctors. It was the worst movement i believe i have had thus far. Its still doing it. Whenever im on a boat ride, it lasts the whole day. Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 6, 2020 Report Share Posted March 6, 2020 @Derek1987 - do you feel dizzy when this happens? I am glad that @MomtoGiuliana shared that she also has this symptom. I am not sure what would cause this but I hope it is " just " POTS 🥴! Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted March 6, 2020 Author Report Share Posted March 6, 2020 1 hour ago, Pistol said: @Derek1987 - do you feel dizzy when this happens? I am glad that @MomtoGiuliana shared that she also has this symptom. I am not sure what would cause this but I hope it is " just " POTS 🥴! Dizzy as in the room spinning? No. More like sometimes i feel like im gonna fall which i react to it. I guess cuz im moving and i shouldnt be so i think im gonna fall. Idk Quote Link to comment Share on other sites More sharing options...
p8d Posted March 6, 2020 Report Share Posted March 6, 2020 I sway back and forth and feel like I am on a boat at every neurologist visit when they do orthostatic vitals. It’s usually after I have been standing still for 3-10 minutes. I have hyper POTS and it might be related in my case to my BP going up but I am not positive. I virtually never stand still that long except for this check at the neuro’s office. I have done this since I was diagnosed on many, many different meds. Quote Link to comment Share on other sites More sharing options...
MedMystery Posted March 11, 2020 Report Share Posted March 11, 2020 Yep, I get this too and the muscle twitches. I have used the boat reference to describe it in the past. Makes it interesting when reading and figuring out if it's my hand or head moving. Quote Link to comment Share on other sites More sharing options...
Nin Posted March 11, 2020 Report Share Posted March 11, 2020 I feel like I'm on a boat constantly. My head feels like it going back and forth. I always say I feel like the dog with the bobbing head off the Churchill insurance advert (I'm in the UK). It's worse when eating, my head feels really heavy and feel like I'm going to fall forward. I've had major problems with my ears which went to the brain and I always thought it was my ears/brain trauma causing this, but now I'm thinking it could all be pots related. I can't believe the symptoms you can get from pots and times I have thought ms or Parkinson's disease. Brain scan shows no sign or either, it just shows brain Dura herniation, temporal lobe slightly displaced, but neurologist said this wouldn't cause my symptoms. Quote Link to comment Share on other sites More sharing options...
Nin Posted March 11, 2020 Report Share Posted March 11, 2020 I also twitch and the more active I am the more I twitch, have had this for a year Quote Link to comment Share on other sites More sharing options...
JFreeer Posted March 19, 2020 Report Share Posted March 19, 2020 Can twitching be to high sodium diet? Quote Link to comment Share on other sites More sharing options...
Photon Posted March 20, 2020 Report Share Posted March 20, 2020 I have hyperPOTS as well. I found that losartan stabilized me to some extent, better than any other BP med. Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 20, 2020 Report Share Posted March 20, 2020 14 hours ago, JFreeer said: Can twitching be to high sodium diet? I don't believe so. Here is an article about complications from high salt diet ( keep in mind that most POTS patients NEED more salt, so this article may not apply to many ). https://www.hsph.harvard.edu/nutritionsource/salt-and-sodium/#ref5 Quote Link to comment Share on other sites More sharing options...
Midnight_Casper Posted November 7, 2021 Report Share Posted November 7, 2021 Hello, @Derek1987. I wanted to ask you if you got a diagnosis about the rocking-bobbing symptoms and if you're feeling better. I have the exact same symptoms, rocking-bobbing-floating-swaying, 24/7, for more than a year, and I feel them violently when sitting and lying down. I have to consciously subtly move my body and tighten my muscles 24/7 to somehow mask the inner motion feelings. I also have POTS. Seems like out symptoms are identical to MAV (Migraine Associated Vertigo) / VM (Vestibular Migraines) and/or to MDDS. I have found this forum where there are a lot of people with similar symptoms. https://mvertigo.org/ Quote Link to comment Share on other sites More sharing options...
Derek1987 Posted November 17, 2021 Author Report Share Posted November 17, 2021 On 11/7/2021 at 5:49 PM, Midnight_Casper said: Hello, @Derek1987. I wanted to ask you if you got a diagnosis about the rocking-bobbing symptoms and if you're feeling better. I have the exact same symptoms, rocking-bobbing-floating-swaying, 24/7, for more than a year, and I feel them violently when sitting and lying down. I have to consciously subtly move my body and tighten my muscles 24/7 to somehow mask the inner motion feelings. I also have POTS. Seems like out symptoms are identical to MAV (Migraine Associated Vertigo) / VM (Vestibular Migraines) and/or to MDDS. I have found this forum where there are a lot of people with similar symptoms. https://mvertigo.org/ No I was never given an answer. Quote Link to comment Share on other sites More sharing options...
Nin Posted November 17, 2021 Report Share Posted November 17, 2021 My head been feeling like its rocking, bobbing all day. Cooked today maybe all the standing triggered it. Baffling me Quote Link to comment Share on other sites More sharing options...
Elizaangelica Posted November 18, 2021 Report Share Posted November 18, 2021 I get the nodding/rocking too. I get it mostly sitting and have always assumed it was my body moving slightly with each heartbeat. But recently, in a particularly obvious flare I checked and it wasn’t at the same rate as my heart at all. It was actually faster than my heart rate, but 100% rhythmic. Someone suggested in another thread maybe it’s adrenaline surges, but I don’t know enough about how that works. Quote Link to comment Share on other sites More sharing options...
jillmae Posted November 20, 2021 Report Share Posted November 20, 2021 I am getting the extreme twitching. It's driving me mad and interrupting my sleep. It's getting worse every day. It's mostly when I am laying down, and goes crazy as I try to sleep or am coming out of sleep. Quote Link to comment Share on other sites More sharing options...
Nin Posted November 21, 2021 Report Share Posted November 21, 2021 I notice the twitching more when I'm about to sleep. This rocking feeling is making me feel so off balance. Quote Link to comment Share on other sites More sharing options...
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