dysygirl

I have been having some dizziness where I almost feel like I'm on a ship. Just a feeling of movement in my head, it almost makes me nauseous. I get vertigo too but this is not vertigo. It's more like a lightheaded wooziness. When I feel like this I check my bp and hr and they have been in normal range. I do get tachycardia, pvcs, inappropriate sinus tach which I take Propranolol for. When I talk about my dizziness with my doctor (who is a Cardiololgist and autonomic specialist,) he refers me back to a neurologist. I have had an mri, sleep study, and balance function test. and all were normal except they did seem to find that I get get vertigo while lying on my left side but it is not an inner ear issue. I was told it could be something to do with a deteriorating bone in my inner ear. I will have a ct scan to look into that further. Does anyone get dizziness without obvious causes, i.e. low bp, dehydrated, high hr, etc? My doc seems to think my dizziness is strange but I thought it just goes with the territory of having Dysautonomia. Thanks!

Thank you for the info. I'd be willing to try anything but it's still not legal where I live. I've been trying heating pad, eating mild foods such as bananas, tylenol and rest. Unfortunately none seem to be really helping.

This morning I woke up and felt off. I immediately was having terrible diarrhea. All day I felt exhausted, hot flashes, headache nausea on and off, chills ,clammy hands and feet and of course diarrhea. I started to feel worse at night. I felt like I had rocks in my stomach and so extremely fatigued. I feel so awful like it's hard to relax in my own skin. My bp and hr are normal. Any similar flares or advice on how to feel better other than just hydration. Thanks!

Wow! It's like I just read my own story. I'm 41 and was diagnosed with POTS and Ehlers in 2017. I have had a lifetime of medical issues that always seemed to be chalked up to "anxiety." I have tachycardia, fluctuating bp (usually low but sometimes crazy high,) dizziness, vertigo, GI issues (I will eat and feel full for hours after with nausea and awful burping,) and then there are the surges. These are the worst!!! You feel like something really bad is about to happen to your body and that it triggers awful anxiety even after the surge is over. I have been working on doing slow deep breaths when it happens. I also have started a new coping mechanism where I think "have I gotten this symptom before?" If the answer is yes, I take a deep breath and say to myself I've had this before and it was not fatal, it will go away. My doctor prescribed a medication for the surges but I did not want to take it. He referred me to the Osher Center for Integrative Medicine at Vanderbilt, to try and get alternative ways to control or eliminate symptoms. I wish I knew the exact cause of each symptom and if there are other issues that haven't been discovered yet.

I sometimes get what I call a rush. I get a weird sensation that comes over my whole body and it is followed by a disoriented feeling. It happened today on my way to pick up my son from school. When I got out tof the car parents were talking to me and it was hard to focus on what they were saying and hard to respond. I could speak in full sentences but felt very off and had a hard time processing. Afterward I got diarrhea and felt very fatigued. These have happened to me before. I have been diagnosed with Pots and Ehlers. The neurologist suspected seizures and did and MRI and EEG. The EEG did not show a seizure but I know they won't pick them up unless you are actively having a seizure. The rushes have been continuing tonight which is not usual for me. I am hoping they are just from being anxious but I don't know. I hate to go to the ER because they will just tell me it's anxiety and send me home. Plus I don't know what tests they would even do to diagnose this other than and ekg. Has anyone experienced anything like this. I just want to feel normal and these awful symptoms to go away.