Does anyone else have severe tremors, body twitches, and high blood pressure with their POTS?

[rhonda1017]

Hi,

    I just came back from Cleveland Clinic and I tested positive on the tilt table for POTS, but they also told me that it is secondary to a primary problem.  They told me that POTS doesn't have severe tremors, body twithces, and high blood pressure.  My tremors are so severe at times that I look like I am having a seizure, but I'm not.  I get body twitches that I can not control.  My hand might just fly up in the air, sometimes it's a leg, or finger, and I've even had my entire body twitch so hard that it hurts.  If anyone else has these symptoms, please let me know and do you have a diagnosis?  Are there any meds or things out there to help with the tremors and body twitches.  They are making me very weak.  I have even fallen because my legs are shaking so bad, that they won't support me.  Thanks for any help or ideas you can give him.

[Phyllischas]

I was diagnosed with Orthostatic Tremors and Propriosponal Myoclonus.  I have very similar symptoms, along with blood pressure that spikes and then often goes very low.  I am taking Carvedilol and Avapro for blood pressure and Clonazepam and Keppra for the neurological conditions.  I couldn't function without these meds, but still have episodes out if the blue.  Then I need to rest for several days to regain my strength.

[Odyvanchk]

I have severe tachycardia upon awakening,sometime middle of night followed by entire body  tremors that lasts 20-3 0 min,not sure since checking time is the last thing on my mind during episodes. I am diagnosed with pots. Just started on atenolol,1/4 of 25 mg,which seems to eliminate day time tachycardia. This morning episode was not expected though. Took atenolol,which stopped tachycardia,but not tremors. Want to try propranolol, which is systemic beta blocker,vs.atenolol is a cardio beta blocker. My sister bought it for me in ukraine. They sell pretty much everything without a prescription. Dr. Svetlana Blitshteyn from NY recomended atenolol after I had a telephone consult with her. I was hoping to ride out POTS without medication. Darn it.

[abmascarenas]

Rhonda, except for the "high" blood pressure, your symptoms are the same as my daughter's. She has extremely low blood pressure. She has been fainting because of it since she was 17.

[abmascarenas]

Personally, I would wait until the Mayo Clinic appointment. We're probably going to be taking our 20-year-old daughter to the Mayo Clinic in December. They will have several specialists on your team to evaluate you. Don't lose hope.

[abmascarenas]

My daughter was also recently diagnosed with POTS. Her cardiologist told us that the tremors are not related... NOT buying it! I have also seen videos and read many posts from others who have POTS and tremors. Don't understand how doctors can keep telling us that the tremors aren't related to POTS! My daughter is only 20 and has her whole life ahead of her... every day is such a struggle for her. She faints almost everyday, and sometimes several times a day. Midodrine and salt tablets aren't working to keep her blood pressure up enough to prevent it from bottoming out and making her faint.

[Traceyecho]

My daughter has POTS and she does the same thing. All of the Dr. tell us that it is not the POTS. It is not seizures. I have seen many people posting things like this. It is not in your head. The Dr.s have not gotten this disease figured out. There are many videos on youtube. Have strength and hang in there. Just know that it is not you, and you are not making it up.