Idiopathic neuropathy and dizziness.

Steve,
Great question. I quit taking my 20 mg of Lisinopril about 9 months ago when my blood pressure went from hi to low. I was hoping it would come back up once off the meds but that didn't happen. BP is generally around 100/60 which I think makes my lightheadedness/dizziness worse.

Carter

my symptoms are exactly what you are experiencing 100%. Lightheadedness but head feels heavy. I feel like a bobblehead if I have to walk on uneven ground. Going from sitting ( always raise my feet up in my lazy boy chair because it lessens the foot neuropathy) to standing and walking often brings on a rush of spacial disorientation. I can deal with this while at home but tend to get anxiety when I go shopping or out in public. I now drive as little as possible which depresses me because I have a sports car I no longer want to drive. I just hope that this lightheadedness ceases to get any worse because if it doesn't, well, we know the rest of the story. I got vaxxed and boosted during COVID and have heard about this so called vaccine injury. My father is a physician and recommended getting the shots. He also poo poo's vaccine injury as a cause. I was a healthy guy up until a year ago. I think we have autonomic peripheral neuropathy as Steve has noted elsewhere on this site. My neuro doc has no idea, I have some neve tests in two weeks but appointments are always two months apart so there is no rush to get this figured out and in the meantime I continue to get worse. Sorry you got this disease at the age of 49, way too young. I'm 66.

Carter

Vestibular (balance) issues which can produce a lightheaded feeling, as well as gait instability, propulsional sensations when coming to rest from a moving position, etc. have been reported in various forms of peripheral neuropathy. I experience these myself, with a diabetic PN etiology, but these could arise from almost any form of PN. Seems to progress gradually. Whether a vestibular workup would lead to any kind of meaningful therapy I don't know, but I plan to investigate it. Additionally, I want to let everyone know that Winsantor is continuing in its efforts to bring its first-of-a-kind disease modifying drug to market as well as implementing its FDA-sanctioned compassionate use program utilizing the drug while pending approval. It needs more people to sign up for this program before it can start the program. I received this communication from Winsantor today:

Phase 3 Trials: Progress and Next Steps In parallel, we have been working tirelessly to secure funding for our Phase 3 trials, which will involve approximately 700 patients globally. We are finalizing negotiations with several funding sources and expect to have the necessary resources soon. Once secured, we aim to launch both the Phase 3 trials and the Compassionate Use Program in the U.S. and other countries.

Yours has come on you quickly…I assume your neurologist did an extensive blood work up? When I have mine, it’s around 10-12 vials.
Are you in an area where there’s ticks? A Lyme test should be included in the blood work.
All the best… Steve

Sorry to hear so many of you are fighting this neuropathy scourge. I have begun to feel very unstable on my feet(feel like almost falling often). Loss of appetite, sinuses always feel clogged. ENT just gave scripts for Nasocort and Astepro. Sent to local neurologist for check on dizziness and unsteady gait. I mentioned my severe, chronic pain as my primary concern as it may be contributing to my balance issues. He had me walk about six feet and back. Told me that neuropathy can't be cured(which I have known). He got a call and told the caller to hold. He turned to me and told me that he was sorry that there was no cure. Went back to his call. Total time was about seven minutes. I am so tired of these medical "professionals" being so dismissive and not able or willing to look deeper into my issues. So, I am left to stumble along, hoping not to fall onto my keister some day.

I recommend trying chiropractor and accupuncture (my chiro does both). Helping me a lot.

hi judy
i have the same symptoms since 6 months . it started with pain in left foot a year and a half ago , then right foot toe numbness and tingling , feeling something under my foot. and constant pain. now both of them are burning at night. and I am always drowsy. i have been to so many drs and tests . noone can diagnose. they give anti depressants and gabapentine or lyrica. those mgive me more dizziness and anxiety and moe depression. . i am 68. and my life changed so much .. I feel 100 years old

Hi Steve,
I had bloodwork for B12 level which was normal. I'll request a test for Lyme disease, great idea. I've lived in MI for 48 years on five acres with thousands of ticks each spring (LOL) and two in Ky as we just relocated. Thanks

Carter

Carter…maybe it’s that Kentucky bourbon 😄. I live in northern NY…just East of Lake Ontario…western edge of Adirondacks.
Steve

Hey Steve,
You live in a beautiful area, I am jealous of you, except when it is winter ;-). LOL

Carter