Does anyone’s internal vibrations become visible when they are in a bad flare? It’s been really hot the last few days and my body is constantly vibrating, dizzy and head pain. Feeling awful.
Saw a neurologist for a POTS second opinion and she said negative so I don’t k ow what else to do
I was recently diagnosed with PCS. The interventional radiologist I met with wanted to take a more conservative approach since I’m not in a lot of pain. I am super dizzy all the time and have headaches. I’ve had a bunch of tests done and everything else checks out as fine.
With the heat this week, I’m feeling way worse. Does the heat and humidity bother anyone else?
The dr left the option open for embolization, but it’s more my choice. I’m so confused if it’s actually something I need or not
I finally have my appointment with a neuromuscular neurologist tomorrow at the Cleveland Clinic. I’ve had a tilt table test that was borderline, but called negative. My symptoms are dizziness, internal vibrations, headaches, and I recently noticed that I don’t sweat like u used to.
Any advice or questions I should ask? I want to make a list.
I was diagnosed with PCS. Met with an IR, said we could hold off on embolization since I’m really not in pain. I get very dizzy, lightheaded body vibrations and get headaches. I’m always afraid I’m going to faint. Borderline POTS from a tilt table test. Pots treatments do not help.
I can’t do anything. Trying to clean the house is torture and I can only do a little at a time. Simple things are really hard for me. Examples; showering, standing in lines, being out in the heat, folding laundry and just playing with my kids.
I’m starting to think PCS might be the root of all of this.
Anyone experience PCS symptoms like these or do I have something else going on
My son has a 3 day baseball. I know it’s going to be warm and I’ll be outside for hours. How do I do this? What’s everyone’s tips for warm weather
I had an initial meeting with an IR. I already had a CT scan where they ended up finding PCS. I don’t really have any pain. I have more dizziness, lightheadedness, strong heartbeat and blood pooling.
He didn’t recommend embolization since I wasn’t in pain. I asked about my other symptoms and he didn’t think it would help and he’s never heard of embolization helping with Pots like symptoms.
I’ve read so much that it could help.
I don’t know what to do. I’d hate to have the procedure and have no relief, but then I’d hate to not do it if it could help 🫠
I was told this week that based on my tilt table test, I could be borderline pots. Does anyone get instead of a rapid heartbeat one that just beats really hard? My heart rate barely gets over 115 bpm, but it feels like it’s going to beat out if my chest
I have an appointment with the ReCOVer Clinic at the Cleveland Clinic. Has any used this service? Was it beneficial?
Would this be considered blood pooling? Left foot is red, warm and feeling swollen. My right foot is ice cold. Possible left side pelvic congestion. Waiting on appointment with intentional radiologist. On CT scan my left gonadal vein measured 11mm. I don’t have a lot of pain. I do get really dizzy and have headaches. I feel faint a lot of the time
One freezing foot and the other red, warm and feeling almost swollen.
It’s been 18 months and I feel like I’m not improving. How do we know what to treat? My main symptoms are dizziness, headache, my body is constantly vibrating, can’t exercise, I don’t sleep well, and I feel worse after eating, standing or showering. I’ve been told it *could* be Mcas, pots, migraines, pppd, and the list goes on. I feel like I’ve tried so many things. I don’t know what to do next. I’d love a little relief.
I’ve done a lot of testing and have tried so many supplements and meds
For those of you that experience dizziness. What does it feel like for you?
Just found pelvic congestion on a CT scan for something else. I’ve been dealing with constant dizziness for the last 18 months. I just feel like I’m swaying. Not sure if it’s related