@Capnbny - before you consider going through a lot of testing, trying an antiviral might be your best bet since your symptoms seem to be left over from having COVID. As they're now suggesting "long COVID" is a thing, an antiviral could make a big difference for you. There is also new research that having a stellate ganglion block has been helpful for some people who have long COVID - Stellate ganglion block reduces symptoms of Long COVID: A case series
Thank you. I will look into that. The hesitation I have about doing such a scan, is that my kidney function is just barely within the normal range, I am in my mid-70's, and it would be risky to have a scan with dye, which is hard on the kidneys. And also, I have thyroid nodules and would be taking a chance to subject them to CT radiation. I hope there is a less invasive test I could try. Also I have NO neck pain and only rare headaches. What I do have is instability, vertigo, and intermittent prickling on left side of face and tongue and in the middle of my left palm. Shaky legs. Left ear fullness, and a whooshing sound in that same left ear, of hearing my own pulse. This lifelong hiker is now feeling prematurely old..... I cannot find a doctor who has any clue of what this life-consuming problem all means. A spine surgeon? ENT? Pain-management specialist (because they often deal with the neck and spine)? So far no help from any of them. JanieJiffy
Before you consider going through a lot of testing, trying an antiviral might be your best bet since your symptoms seem to be left over from having COVID. As they're now suggesting "long COVID" is a thing, an antiviral could make a big difference for you. There is also new research that having a stellate ganglion block has been helpful for some people who have long COVID - Stellate ganglion block reduces symptoms of Long COVID: A case series[/QUOTE]
I am sure I don't have long COVID, because COVID barely affected me. It was only a slight stomach ache. And this vertigo problem I have, pre-dates the emergence of COVID by several years. But I have started on JOH's Lysine, etc. protocol and we will see if that helps...
@JanieJiffy, I actually posted the long COVID info more for @Capnbny, but it does apply to anyone who's had COVID & is still struggling w/ symptoms afterward.
This reply is for another conversation with Isaiah-- Thanks for the video link for jugular vein compression.. I actually tried to get an appointment with Dr. Centeno about a year ago, filled out a symptom questionnaire, and he cancelled the appointment I guess because my symptoms didn't fit anything they worked on surgically.
I'm sorry to hear that. Dr. Hepworth in Denver specializes in treating patients w/ IJV compression. Here is his contact info in case you'd like another resource: •Dr. Edward Hepworth, IMMUNOe, 3150 E 3rd Ave, Denver, CO 80206 (303) 224-4711 http://www.immunoe.com 2
Thanks... I still should get someone local though (SoCal) to tell me if this is a likely diagnosis before I go to Denver. I go back and forth between the neck problem and the possible viral problem and cannot settle on the likelier culprit. I have prickling left side of face and tongue, irritable bladder, disequilibrium, being on the edge of vertigo, tired muscles and deep fatigue that all factor into the diagnosis and I cannot even decide what kind of doctor could figure this out. The neurologist was stumped.
@JanieJiffy - I totally understand not wanting to travel unnecessarily. I'm in NorCal but someone just referred me to https://houseinstitute.com/ 1 . Look at EAR Svcs, MD is one of the things they specialize in. Might be a place to start. They're in Los Angeles. Prickling face is a trigeminal nerve issue, & tongue tingling can also be caused by the TN based on what I just read: "General sensation to the anterior two-thirds of the tongue is by innervation from the lingual nerve, a branch of the mandibular branch of the trigeminal nerve (CN V3). [14]". The Trigeminal nerve has 3 branches. Here is an image that may help you understand some of your symptoms: File:Trigeminal Nerve.png - Wikimedia Commons Additionally, this YouTube video is helpful:
Thanks for the help... ! actually I went to the House Institute a couple of years ago, had an appt. with Dr. House himself, and they really had nothing to offer me except a good pamphlet on MD, but nothing in terms of solutions...I think my next step is a consult with a spine surgeon. I have a couple of appts. set up a month from now (that's what the wait is).. unfortunately most of the specialist docs are young guys now with not much experience with unusual situations like mine. (Medicare must hate me by now-- all these claims; I look like a hypochondriac). One spine doc wanted $1,000 out of pocket for a consult! Another one wanted $500! For now I am sticking with the in-network guys as far as they can take me toward solutions. But what else can we do? Give up and get depressed and housebound? Wearing a neck brace helps sometimes to avoid spin-outs. I wear it in bed and when I am in a position with my neck forward for a long time.
Thank you for the info about the House Institute. I was considering a trip down there but will pass based on your experience. I'm glad you've found somethings that help w/ your pain & symptoms. I love your positive, never-give-up attitude. I'm the same way. No pity party, just keep pressing on for improvement. I totally understand your thoughts about Medicare. I'm in the same boat. I had bilateral hip replacement last year & didn't pay a penny. I was extremely thankful for the thorough Medicare coverage, but I'm also dealing w/ back, knee & shoulder issues so PT & doctor appts. continue. SHEESH - this getting older stuff can be annoying!!
When we are young and active we never imagine we could end up with so many problems. We simply get "delicate" as we get older. I still hike 3 days a week and kayak once a week, and bike once a week, but I have a good pal who goes with me much of the time, in case I should have a problem. Thank God for good friends! I am trying JOH's regimen now. The hardest part is remembering to take the Lysine in between meals, properly spaced, stomach empty. Have you had your neck alignment checked out?
So good that you're staying active, JanieJiffy! We're at that "use it or lose it" age. I used to hike 3-5x/wk until last year when I had my hips replaced. Recovery has slowed me down way more than I expected, plus my husband is retired now, & I feel guilty leaving for a long hike while he sits at home (no he isn't interested in joining me...his idea of a hike is about a mile). I used to do more cycling, but my accident in 2015 that started my Meniere's ordeal felt like a warning, so I haven't ridden much since then. I would love to kayak, but I have shoulder issues now. I did go on a 2 week kayak trip in Alaska in 1985 when I was much younger & more able bodied. It was quite the adventure!! I totally understand the bit about trying to remember to take supplements in between meals. I've been an abject failure at that when I've tried in the past. Just can't get the rhythm down. I see a chiropractor regularly, so yes, I get my neck adjusted frequently. I had a whiplash injury in college that recently started to give me more trouble. Someone just sent me a YouTube link re: doing neck traction at home. She said it's helped her tons. I'm going to try it.
Let us know how the neck traction turns out. How odd that a cycling accident started the Meniere's ordeal. I wonder how that could be? Today was awful--got back from an hour of quiet kayaking, opened the fridge to get breakfast and extended my neck forward and to the left, and oh no-- here we go again. Vertigo coming on! Had to lie down again!
I'm sorry that your beautiful morning ended with vertigo! That's just not fair! I hope it was short lived, JanieJiffy! Actually, head injuries are among the known/suspected causes of MD. When I was first diagnosed, I did a lot of digging around on the internet for possible causes. Head injury popped up early on & since I was 4-6 weeks out from my cycling accident w/ head injury, it made total sense. I'm still not convinced that there isn't a viral component if Epstein Barr could be causative. I've had active EB in my body for a number of years. Maybe the head injury & EB collaborated in my case.
I am wondering if the head injury could have misaligned your cervical spine or caused a bony spur there, that disrupted blood flow. I am trying to make a connection here with the research finding of vascular compression in the necks of some MD patients. (I just made an appt. with a neuro-vascular surgeon next month to see if that line of inquiry goes anywhere in my own case.)
I had a car accident when 15 and i also have neck pain problems. Meniere started not very long after the accident(but every doctor tell me its impossible and am just trying to make money on the insurance). Some move/position also trigger ear fullness vertigo.(like when i lean on the side to look under something). I also started lysine monday, i do have some immune issue and i hope it help with these at the bare minimum. Am also looking to try ivermectin.
I also can go into vertigo when I extend my neck forward and turn to look to the left (my bad ear side). No doctor has ever understood why.
When my symptoms started, I looked up causes for MD, & head injury was in the list of possible causes I found. At that time, it made perfect sense that was the cause of my MD onset since I was 4-6 weeks out from a cycling accident w/ a head injury (thank goodness for my helmet or I probably wouldn't be around to write this now). Head injury is also listed as a possible cause of MD in this MD article: Meniere's Disease Any doctor that deny's head injury as a possible cause of MD hasn't researched very well.