Idiopathic neuropathy and dizziness.
I have been diagnosed with idiopathic neuropathy. Came on suddenly 8 months ago. The last 8 months have been many doctors appts to find no cause. I also just do not feel well. Dizzy like.
Head feels heavy and just not right! Not one doctor can answer that. I really feel like there is something going on in my body but no one can figure it out! It’s seems like neurologist came up with the idiopathic name since it can’t be figured out. I am only 53 and have otherwise been very healthy and active, Life has sure changed. Anyone else feel dizzy? Feel generally bad?
Interested in more discussions like this? Go to the Neuropathy Support Group.
Speaking from experience, I too had experienced increased lightheadedness and dizziness, but my heart rate had also changed. Turned out I had multiple arrhythmias and ended up needing a cardiac ablation. Have you had an EKG? Seen a cardiologist? autonomic neuropathy affects the cardiac system as well.
I’ve experienced what’s called “postprandial hypotension,” lightheadedness caused by eating sugar/empty carbs. It can be prevented, tho, if you prepare for it. Google it. It’s all part of the autonomic system being slightly out of whack due to peripheral neuropathy.
Yes my first symptom of sfn. Its not vertigo it's a lightheadeness caused by the small fibers not Vasoconstricting the blood keeping it to the head when you stand up. But what was odd is that I would get it at anytime standing not when i just got uo and comes and goes. However 2 months later I do feel it when I stand A month after the lightheadedness my feet began to burn that led me to sfn. Another thing I have is an increased heart rate the criteria being an increase of 30 beats within 8 mins of standing up. The lightheadedness has gotten better but stress makes it worse. I'm 54.
I have similar symptoms and was recently diagnosed with sensorimotor peripheral neuropathy.
And yes, in addition to increased and prolonged vertigo, like you, sometimes feel “topheavy” as if I’ve swam 2-3 miles and am getting out of the pool. Other times, I’m standing still, and the room spins to the point of nausea, and sometimes I feel like I did many weekends in college after too much if a good time. My cardiologist actually picked up possibility of PN after hearing me describe my symptoms and referred me to neurologist. I had been in PT several times, ENT thought it was ear crystals, but PT unable to repeat feelings with Eply procedures.
Lot of “I don’t know” answers, and being in health care I understand.
This has developed since having COVID along with a cardiomyopathy.
It is quite frustrating trying to figure out the “why” in all of this. Reading John’s Hopkins and Cleveland Clinic literature, dizziness is indeed an accompanying symptom thought due to the “proprioception” issues between the feet and brain that does not match what the vestibular system is trying to tell the brain.
I’m 49. It started 8 months ago. Numbness, pain. Patchy distribution face, hands, legs. When I walk I can’t quite process my surroundings, it is a kind of dizziness, head fog, off balance when turning. I’ve been in a state of terror. I did not accept idiopathic as an answer because I didn’t feel they did enough. I went to the Mayo Clinic. Got nerve biopsy report yesterday. It’s a neuronopathy – involves nerve cells themselves and likely has central nervous component. The worse end of the spectrum. I’m sad, very worried, but the journey continues with this revelation to investigate causes and pray for the best scenario in the scheme of things. The most important thing I want to say to you is you are not alone. Not in the suffering, not in the wondering, not in the impact on your life, not in the fear of what can come. If you haven’t had a nerve biopsy, ask for one. Spinal tap? I am now in a position when they will do one. Good luck and stay connected. All the lights are on here for you.
My symptoms also started after covid and the vaccines, and I’m being told its not likely that!
Translation. They really don’t know. Doesn’t matter where it came from, just want to stop being dizzy.
Welcome @kid2thdr, It sounds like your cardiologist did a great job listening to you describe your symptoms and hopefully some of those "I don't know" answers will start to get answered. There is another discussion you might find helpful sense you mentioned recently being diagnosed with sensorimotor peripheral neuropathy.
Generalized Sensorimotor Peripheral Neuropathy over my entire body: https://connect.mayoclinic.org/discussion/back-again-its-been-a-while/
Do you mind sharing what brought you to Connect?
Yes, I’ve felt that along with a host of other symptoms.
I was searching for information concerning my diagnosis when I came across the history reported by another subscriber that sounded very similar to my own. I also live right outside JAX and have considered moving all of my health care to Mayo.