So my wife finally saw me rocking

[Derek1987 0]

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. 

[Derek1987 0]

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.

[MomtoGiuliana 0]

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.

[Derek1987 0]

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.

[Pistol 0]

@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 🥴! 

[Derek1987 0]

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

[p8d 0]

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. 

[MedMystery 0]

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.

[Nin 0]

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. 

[Nin 0]

I also twitch and the more active I am the more I twitch, have had this for a year

[JFreeer 0]

Can twitching be to high sodium diet? 

[Photon 0]

I have hyperPOTS as well. I found that losartan stabilized me to some extent, better than any other BP med.

[Pistol 0]

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