adejuliannie

11 hours ago, Pistol said:

@adejuliannie I am sorry to butt in, since your question was addressed to DizzyGirls, but I too have autonomic seizures and take the non-selective beta blocker Carvelidol. It helps a lot with many of the symptoms. I tried other ones ( Metoprolol, Bisoprolol, Propanolol ) but only the Carvelidol made a considerable difference. However - it did not help with the seizures. My seizures are caused by excessive sympathetic overcompensation causing dumping of adrenaline, which in turn constricts all of the blood vessels what then stops circulation to the brain. What helps me there is a calcium channel blocker ( Diltiazem ) and regular IV fluids - one dilates the vessels and the other keeps them dilated ). 

Hopefully this is helpful to you. 

@Pistol thank you for your input! i will look into these options & bring it up to my doctor  

On 10/16/2020 at 3:31 AM, DizzyGirls said:

Both of my daughters had seizure-like symptoms (involuntary jerking, temors, absence-like seizures) when their propranolol stopped working and they were both switched to Metoprolol (a cardiac blocker).  The Metoprolol worked great for their tachycardia, but seizure-like symptoms and tremors popped up.  Through a bunch of research and some very frustrating doctor visits with doctors that should have, but didn't know what they were doing, I figured out that they needed a non-selective beta blocker.  It crosses the blood-brain barrier and they need that.  Their Sympathetic Nervous System was taking charge and not settling down.  My youngest has been having a huge upswing in that right now.  She had some stressful things going on and had a panic attack, which, in turn, created an overreaction by her SNS.  You could see it in her eyes.  It caused a lot of tremors, she can't speak when this is happening, and also has dystonia (which doesn't help things).  She has a big problem with hyperacussis, as well, and that is a huge trigger for tremors and seizure-like activity.  So, definitely a Dysautonomia thing. 

@DizzyGirls hi! i was wondering what non-selective beta blocker they are on? i’ve been dealing with pots since 2016 & i recently found out after getting retested that it has gotten randomly severely worse. i’m 21 so that’s a bit odd for it to go backwards, but the main thing i’ve noticed so far is that my metoprolol is not helping with the involuntary jerking and tremors. not sure if it’s the same as your daughters, but for me when i stand up and have a pots episode i lose my vision and then sit down or crouch to the floor so i don’t fall. i then am completely out of it but not unconscious and my body jerks and shakes for 30 seconds or less  i barely remember any of it after. it’s becoming unbearable and i’m desperate to see if possibly changing medications could help