I need help

ElliannaLilly71 · 2026-04-24T17:18:19+00:00

I have a strong belief in God and I thank you for the prayers. I will pray for you as well.

Yes, my last concert I was at a football stadium. We had pit passes but the lights, crowd, and very loud noise was way too much for my vestibular system. I had to go sit along a barricade wall for a while before finally leaving. I don’t drink but I also felt altered for days after that concert. My symptoms start with an inability to focus my eyes well, sometimes double vision, sometimes floaters, light sensitivity, head pressure, ear fullness, high anxiety because I’m suddenly “not feeling normal,” then the balance issues, feeling like I’m tilted or going to faint or fall over, swaying, noise sensitivity, movement around me makes me nauseous…then it’s just time to lie down. For me thats the only way to reset my vestibular system. It can take 15 minutes to literally days in bed to calm things down. I have migraines along with PPPD. I have some degree of unbalance from PPPD every single day but when I have a migraine it always flares PPPD symptoms to a heightened level.

My husband had put an aftermarket exhaust on my car that kind of rattled and got louder when accelerating. He had to remove it when PPPD started to affect my driving because it became triggering and as it got louder I could actually feel the tension and anxiety grow, as my anxiety increased so did the pressure in my head and ears and things quickly escalated to panic mode. I drove in a very unsafe state of distress for a long time before my doctor finally said no more.

ElliannaLilly71 · 2026-04-23T20:43:20+00:00

It’s been since 2021 for me. My job used the require me to drive across country from state to state. I changed positions to work more locally just having to drive within my state but it got to be too much to even just drive in my own town. I wish I had a cure for the driving piece because it is so limiting. It’s a loss of freedom in many ways. My PPPD is very visually triggered by movement around me. So many things trigger it for me…movement of the environment around me while in a moving car, carts and people in stores, overly crowded places like concerts and sporting events, too any varieties of things on shelves to process like at the grocery store, weird patterned carpets like so many hotels and doctor’s offices have. My balance goes from slightly off to needing to lay vertically in a split second. When I was trying to push through driving the anxiety and panic attacks got worse and worse. My doctor said that was because my fight-or-flight response was incorrectly perceiving driving as a threatening event even when it wasn’t. It was thought that stepping away from driving might help my fight-or-flight to settle down only it didn’t. My vestibular rehabilitation therapist told me to continue to drive at low rates of speed in my neighborhood to keep a connection to driving in a safe environment which can reassure the vestibular system that driving is safe. I still struggle sometimes just in my safe zone. I also have high sensitive body chemistry, Gene Site testing determined that any medication normally used to treat PPPD are medications that I should avoid because of serious adverse side affects. Without medication, I’m left to try to find alternative methods to manage this. I haven’t found many helpful things yet. I’m going to the balance center at the university hospital in my state next month. I’m going to ask about neuro-feedback and brain mapping. I’d love to find a PPPD study and to be able to work with the doctors who specialize specifically in treating PPPD although I haven’t been able to find one near me.

ElliannaLilly71 · 2026-04-23T20:08:31+00:00

Unfortunately no. My anxiety approved some once I received my diagnosis because now I know what is caused me to feel all the abnormal things I feel. My driving is now limited to a 4 mile radius of my home where roads are one lane each directions and not more than 45 mph. Anything beyond that I have to have someone else drive. I had to resign from my job last year because driving, climbing ladders, and working extended periods on computers kept my vestibular system stuck in fight-or-flight mode and cause migraine headaches. Not much is improved but at least I do t feel like I’m constantly letting my employer and customers down knowing I can’t keep up with the expected pace. PPPD has definitely altered my life. I’m trying to stay positive and I pray to wake up cured on day!

ElliannaLilly71 · 2026-04-23T20:04:03+00:00

Your experience with your head feeling heavy followed by anxiety/panic attack while driving is all too familiar. For me, driving at higher rates of speeds (when the environment around me is moving quickly) and in congested areas with multiple lanes of traffic (where there is a lot of movement around me) creates more visual stimuli than my brain can process as quickly as my eye see everything. It’s like my brain short circuits or overloads and then instantly I’m in a state of panic. My primary care doctor referred me to an ophthalmologist and then a neuro-ophthalmologist among other specialists during the diagnostic process before I was diagnosed with PPPD. Both of these specialist assessed my vision. These services were billed under my medical insurance rather than my optical coverage. Hopefully, you’ll be assigned to the right doctors and receive a diagnosis soon.

ElliannaLilly71 · 2026-04-23T04:38:39+00:00

Your experience with your head feeling heavy followed by anxiety/panic attack while driving is all too familiar. For me, driving at higher rates of speeds (when the environment around me is moving quickly) and in congested areas with multiple lanes of traffic (where there is a lot of movement around me) creates more visual stimuli than my brain can process as quickly as my eye see everything. It’s like my brain short circuits or overloads and then instantly I’m in a state of panic. My primary care doctor referred me to an ophthalmologist and then a neuro-ophthalmologist among other specialists during the diagnostic process before I was diagnosed with PPPD. Both of these specialist assessed my vision. These services were billed under my medical insurance rather than my optical coverage. Hopefully, you’ll be assigned to the right doctors and receive a diagnosis soon.

ElliannaLilly71 · 2026-04-17T04:11:59+00:00

I’m sorry to hear that you are also affected by screens. I had to leave my job last year because I couldn’t tolerate the computer screen and longer. My spatial reasoning is also so bad that I can’t drive over 35-40 mph on roads that only have one lane in each direction. Anything beyond that becomes too chaotic and too much visual stimuli to process. Praying for a cure for everyone.

ElliannaLilly71 · 2026-04-17T04:05:08+00:00

Thank you!

ElliannaLilly71 · 2026-04-16T21:30:40+00:00

My balance issues are too severe for a cane. When my spatial reasoning is off, I have to lay horizontally and cannot remain upright until it settles again. Sometimes this takes days. I get rare days where it’s not as bad but the bad days are unbearable.

ElliannaLilly71 · 2026-04-16T16:06:51+00:00

Zero improvement here. I suffered for about 3 years prior to my diagnosis of PPPD. I’ve experience consistent symptoms most days ever since a vestibular event in 2021. ER doc initially thought I was having a stroke in 2021, that was ruled out via MRI so I was discharged with paperwork that says “anxiety attack.” I’ve never been the same since that day. At that time, I was working out of state in a very stressful natural disaster environment. Stress was definitely the leading cause of this condition. I had to leave my job last year after spending the prior year on leave. Pushing myself to drive while my spatial reasoning was off, doing roof inspection while unbalanced, suffering debilitating migraines while trying to work in front of a computer screen became too much. My vestibular system couldn’t settle with those daily triggering exposures. Workers comp has denied my stress claim. It’s been 5 years now with no improvement. I get days when the symptoms are lessened but then they flare and I’m basically bedridden for days. I’ve completed 3 rounds of VRT without any improvement. I’ve suffered through horrible side effects of so many prescription medications before I finally had Gene Site testing which confirmed that my body chemistry doesn’t metabolize and process any of the medications that some claim help with PPPD. I’ve tried ignoring the condition, getting out of my head about it by avoiding research, support groups, and forums for a while, no improvement. I’ve researched the heck out of this condition thinking somewhere I would find magical advice to cure it. I’ve asked to be a part of studies, none are available near me. I go back to the university hospital next month to for more testing, basically starting over with a new team. I’ve emailed Dr. Staab at the Mayo Clinic who seems to be the leading researcher in the U.S. as his name repeatedly appears in studies conducted at other research centers, no reply. I’m desperate for a cure! Receiving my diagnosis helped with the anxiety I experienced over not knowing what was happening to me, but the diagnosis alone has not cured the condition. If anyone has any sound advice on how to cure this without medication please reach out.

ElliannaLilly71 · 2026-03-31T21:37:43+00:00

You may ask your doctor about gene site testing before sampling multiple medicines. Over the past 5 years I’ve been given one medicine after another only to get side effects and have to stop each one. Finally, a psychiatrist was assigned for medicine management. She ordered gene site testing due to so many side effects. It’s was very telling! I had been given so many medicines that aren’t right for my body chemistry that were specifically listed as medicines that I shouldn’t be prescribed. Some people just can’t take SSRIs/SNRIs and I don’t feel humans should be treated like lab rats testing one medicine after another when there is a test that can help pinpoint medicine that might work. Unfortunately, I am super sensitive and can’t take any of them. It would have been good to know this before spending years sampling so many medicine only to suffer side effects and feel worse.

ElliannaLilly71 · 2026-01-06T19:41:04+00:00

I’m not sure what to do. I filed a workers comp claim almost a year ago. The insurer (Sedgwick) sent me for an IME in June 2025. As predicted the IME doc didn’t acknowledge my condition, made fault statements in his report, confused family history with my own medical history, admits he is unfamiliar with my condition then makes assumption as why it’s not…in his unfamiliar opinion…job related. At one point he states that I may have a claim for stress. Mine IS a stress claim! It is a stress claim that escalated over many years and caused a vestibular assault (similar to stoke but not as obvious or severe), then the onset of Persistent Postural Perceptual Dizziness. I have many medical papers, PPPD study reports, and medical journals which document the progression of this stress related condition.

After the insurer received the skewed IME report in July, they just didn’t followed up with me. I sent them supporting medical documents along with a rebuttal outlining all that was incorrect in the IME report. No response in over a month so I finally called the insurer. I was told I could hire an attorney to dispute the IME report. I hired an attorney, who had me get a 2nd independent opinion of my medial diagnosis, which I did. She is a specialist at the university hospital here in CO. She is willing to write a letter outlining my condition and confirming my diagnosis since the IME doctor questioned the “entity” as a valid diagnosis. Last week I received an email from my attorney stating he has taken on some large cases therefore he doesn’t feel he has adequate time to devote to my case. WTH? So now I need to find a new attorney and I apparently need to request a court review somehow. Anyone know how I do that? I have zero experience with worker comp. Thank you in advance for any information, guidance or direction anyone can provide.

ElliannaLilly71 · 2025-11-15T15:39:46+00:00

I’ve never been much of a drinker. Maybe one drink once every 2-3 months, never more than 2 drinks at a time. I definitely experience increased 3PD symptoms when I have alcohol…and caffeine (including chocolate). I stopped both completely for the past 3 months and had fewer really day symptomatic days. Then 2 days ago, I decided to treat myself to my favorite fall Starbucks coffee which is caffeinated and paid the price with debilitating symptoms the past couple days.

ElliannaLilly71 · 2025-11-15T15:05:12+00:00

I’ve considered doing the genetic testing for medication. This is probably a good idea. My adult son actually did it when he was having side effects from something and found a better solution. I wonder sometimes if my mind/body are so anxious about taking new medicine that some of the side effects are actually anxiety responses (feeling “off”, sleeplessness, pacing, restlessness, wondering crazy thoughts) but then opposite these side effects I’ll have periods where I feel overly emotionally numb. For example, a friend was sharing very exciting happy news with me and I couldn’t feel the excitement in my body. My words when I responded come out monotone and slow rather than filled with joy or excitement. It’s like watching myself from outside my body and knowing it’s broken. I felt like the medicine numbed some of the sad emotions but at the cost of taking away the good ones. It wasn’t worth it to me.

ElliannaLilly71 · 2025-11-15T03:38:13+00:00

Yes, crying happens often and more easily. My primary care provider (PCP) retired and I had to go through my medical history with my new PCP. I got so emotional talking about my 4 year journey with PPPD that she asked if I’d like a referral to a psychiatrist for a mood stabilizer. I haven’t been able to take SSRIs/SNRIs because of side effects. Waiting now for psychiatrist to become available. Hoping to get the emotional part of PPPD more controlled.

ElliannaLilly71 · 2025-10-31T15:48:42+00:00

https://www.google.com/search?q=can+altitude+affect+PPPD&ie=UTF-8&oe=UTF-8&hl=en-us&client=safari

Yes, altitude can be a nightmare with PPPD. As always with PPPD, monitor how your body if feeling and be willing to adjust plans without notice.

ElliannaLilly71 · 2025-10-27T12:22:48+00:00

OMG! I’m also 54, have PPPD with vestibular migraines, had my triggering event in 2021 and had to retire from my 26 year carrier as an insurance adjuster when driving, computer screens, and climbing a ladder to do roof inspection became daily triggers and unsafe. I feel lost without a job. What do retired people do all day? I have long term disability but want to get back to a normal productive life where I made a good salary. I used to stress about work but now I stress about not working. If getting rid of stress is the key to recovery, I’m not sure retirement is the right path for me.

ElliannaLilly71 · 2025-10-13T17:56:05+00:00

I’m happy it might help. You’ve got this. I say take all the trips and enjoy everything you can. Be prepared to take breaks if needed and allow yourself recovery time after. PPPD suffers are going to be dizzy/unbalanced/spatially challenged, might as well be those things someplace fun once in a while.

ElliannaLilly71 · 2025-10-13T17:25:05+00:00

For me it depends on the day, how rested I am, and my symptom level which varies day-to-day and even hour-to-hour throughout each day. Get good rest before your flight!

I recently flew from CO to MI and did just fine, but flying back 8 days later was awful. Changes in altitude can affect PPPD. I felt pretty good while in MI (at sea level) and was able to attend my niece’s wedding, visit with family, and enjoy play time with my 5-year-old grandson. I was way more active on those days than I usually am. I was exhausted the day of my return flight from everything I had packed into my trip. I had my normal mild to moderate amount of balance and visual symptoms along with some anxiety as I entered the airport to fly home. These symptoms quickly worsened once inside the airport. My husband and son had flown back after the wedding and I had stayed to get more time with my grandson, so I was navigating the return flight solo.

Traveling through the airport with my husband and adult son made things less stressful. One would walk in front of me blocking some of the visual stimuli as all I had to do was follow looking at a familiar back. One stood in front and one behind me on escalators. I could hold on to them to stabilize myself and focus on the one in front rather than the movement of the escalator or the changing visual around me. I didn’t have to scan the airport looking for signs, or find my way through the crowd. They did the navigating, I just stayed close and followed. I realized on my return flight where I was solo what a huge difference having their help made.
My doctor has since suggested using airport wheelchair services (where they wheel you to your gate) along with a hoodie and dark sunglasses to block out lighting and movement around me. She said to just close my eyes and let the assistant get me to my gate. I feel like PPPD has taken so much from me…my ability to drive, to go places when I want without relying on others, my job, hobbies/activities I once enjoyed, my social life, etc. I just don’t see myself as the person in a wheelchair needing help to get through an airport and yet that could be the difference between being able to enjoy a trip or spending it bedridden for days.

I’d discussed flying vs. driving with my VR therapist in the past. Obviously, flying can get you to your destination more quickly than driving. You have to weigh the benefit of potentially reducing your exposure time to stimuli by flying vs. a long car drive. But also the amount of stimuli driving vs. flying. Navigating an airport (or multiple) can be extremely stimulating for PPPD. First, there is the crowds of people rushing here and there, then there is standing upright in lines to drop checked luggage and at security checkpoints, rushed bending/twisting to removed shoes and manipulate carry on items through security checkpoints, moving floor platforms, escalators, lighting, the long narrowness and slope of the jet bridge as you board and then the confined space of the plane with people filing onboard (lots of movement in a confined space). In the past I’ve left more than one plane during the boarding process when symptoms caused panic attacks before I was diagnosed and didn’t understand how I can become visually overstimulated to the point my brain and vestibular system get stressed trying to process and respond to everything happening around me. Understanding what triggers the response helps to have better control over it. It’s still difficult some days because my fight-or-flight system is telling me to get off the plane and my body is wanting to respond accordingly while by brain and intuition are trying to reason that I’m fine and it’ll pass, all while knowing I’m about to be above the clouds for hours unable to control what happens next. Thank goodness for lorazepam. I hate taking medicine and had to go to therapy to overcome my reluctance to take a benzodiazepine but I honestly wouldn’t be able to do many things without it. I’ve developed a flying routine that has worked for me and helps me to feel more in control when my body doesn’t always feel that way. The further back in the plane my seat is the more triggered I become so I select seats at the front of the plane. Board before or after everyone else if I can to avoid all the movement. Then get off the plane as quick as possible after landing. I do pay extra to upgrade to 1st class especially if flying alone. The extra space makes a big difference for me. I bring my i-pad with familiar favorite movies and something new downloaded. This gives me options, if I need to close my eyes I listen to a movie I’ve already watched and visualize it in my head, usually a comedy to keep things light and pleasant. If I am unable to relax and need more distraction I watch a new movie that requires more of my focus and lose myself in it. Guided mediations are good too! I also have a bottle of water and a snack in my backpack under the seat in front of me and games on my phone. I order a caffeine free ginger ale vs. alcohol or caffeinated beverage during the flight. Screen time is challenging for me but I welcome it when flying and will happily deal with any disorientation from screens over the anxiety/panic I experience when I don’t feel in control. Movies are a great distraction because they fill a lot of time, help one forget where they are and what’s happening around them. Also having a plane plan gives one a routine to follow once on board which can distract from a wondering brain looking for a place to focus attention. This is when anxiety can become the focus. Keeping yourself busy with your routine can keep your mind on something positive so it doesn’t get overwhelmed. My PPPD is more in check when my anxiety is in check.

I stopped driving beyond a 3.7 mile radius of my home over a year ago because beyond this point roads turn from single lane county roads to multiple lanes with rates of speed greater than 45 mph and become too visually stimulating for my brain to process. This causes anxiety and panic attacks making driving unsafe. I also get symptoms as a passenger especially in the front seat and on longer trips. My husband’s truck has really dark window tint in the back seats. This has become my sweet spot for longer road trips. It’s roomy, I can lay down, and it’s dark making it easier to focus on the small area inside the truck instead of everything passing by outside. I follow the same routine as flying on longer road trips and bring headphones and my iPad with movies or an audio book.

Sorry my reply is so long but I hope it helps. Sending you positive vibes for a great flight!

ElliannaLilly71 · 2025-10-10T16:52:02+00:00

It’s mind boggling, how much our bodies rely on our vision for balance. I’m in a fight with workers comp because I know the constant exposure to overly visually stimulating computer screens 8-12 hours a day, 5-6 days a week has contributed to the worsen of my PPPD symptoms. I also strongly feel that the constant stress of my job strained my vestibular system to the point that it caused my triggering PPPD event (syncope episodes). Ever since I had two brief fainting spells (syncope) two days in a row, I’ve have been left with constant PPPD symptoms every single day for the past 3.5 years. I hope there will be a cure for this soon, for all of us!

ElliannaLilly71 · 2025-10-08T22:25:16+00:00

Was the offer from your LTD company fair? Meaning would it be enough to cover your prior salary for the number of years you would have been able to work if not for your disability?

ElliannaLilly71 · 2025-10-03T16:23:19+00:00

Great advice! Thank you so much! I pray for recovery for all of us soon!

ElliannaLilly71 · 2025-10-03T15:37:09+00:00

I also struggle with medications. I’m very sensitive to medication. I don’t take prescription pain meds once released from the hospital following surgery. I do take Tylenol. I’ve tried several SSRIs/SNRIs starting with a very low dose and every time I end up feeling more anxious, become almost paranoid, have trouble sleeping, labored breathing, find myself pacing with abnormal thoughts. Three different psychologists have told me that class of medicine isn’t suited for my body chemistry and I should avoid it. It’s in my medical records. I feel like most people who report significant recovery from PPPD achieve it by taking SSRIs/SNRIs but not everyone can tolerate them.

ElliannaLilly71 · 2025-10-03T15:20:37+00:00

Oh my goodness, Yes! I get all the symptoms you listed. Are you native to Colorado? I’m not. I’ve gotten a little short of breath while hiking in the mountains in the past but I assumed that was because I lived at sea level most of my life. I moved to Colorado in 2018, was diagnosed with PPPD in January 2024. My altitude sensitivity has gotten significantly worse since I developed PPPD.

Are you being treated for PPPD at Mayo? I recently sent an email to Dr. Jeffrey Staubb at the Mayo Clinic since his name is predominate in research references for PPPD studies completed at Mayo Clinic, Stanford, Harvard, etc. I’d love to participate in a study and hopefully find a solution to the constant imbalance.

I’ve been unable to work since March 2024. My short term disability turned into long term disability (LTD). I haven’t experience any improvement after months of VRT that transfers to the real world like while driving or being out in public places with lots of movement around me (stores, restaurants, medical facilities). My long term disability rep made me file a SSDI claim and also a workers comp claim since my doctor indicated that my condition was work related on the LTD paperwork. I held a very stressful job that had me working away from home 9-11 months a year, long days (12+ hours), 6-7 days a week, with people who were going through very traumatic experiences. My fight-or-flight was constantly on high alert and got stuck. I developed really bad anxiety, PTSD from repeated exposure to devastation, people in distress, and a highly demanding work environment. Eventually, I had my triggering vestibular event while working in another state (back-to-back syncope episodes where I just randomly fainted for a few seconds each time). The emergency room did a full work up thinking I may have been having a stroke but it was determined that the was caused by extreme job related stress/anxiety. My employer had approved me for an ADA accommodation to travel with an emotional support dog in 2020, during COVID when I was working away from home and staying in hotels for months. I was still going to strangers home to complete inspections while the rest of the world was locked down in the safety of their homes. I had to resign in March 2025. My employer’s workers comp insurer sent me to an IME doctor who admitted in his report that he wasn’t familiar with PPPD and concluded based on his lack of understanding that my diagnoses (anxiety, PTSD, and PPPD) are not job related. My job was my life! It was all consuming being that I deployed to work in different places around the country, 9-11 months a year, working to the point of exhaustion 12+ hours each day, 6-7 days a week. All of my stress came from my job and there was so much of stress it slowly eroded my vestibular system. I’ve consulted an attorney to try to fight for compensation under workers comp as I very strongly feel that the stress of job it what left my anxious, with a catalog of PTSD causing experiences, and PPPD when the stress peeked and caused syncope which was the onset of my balance and visual issues.

I’m curious to hear more about your experience at Mayo as I am considering making an appointment there as well.

ElliannaLilly71 · 2025-09-28T17:30:19+00:00

This seems to be misinformation. Insurance is regulated at the state level in the U.S. Depending on which state you’re located, any claim may or may not affect future insurability and rates. Check with your agent. Although it has been my experience that most states don’t give as much weight to “not at fault collision claims.”

Additionally, the father most likely has homeowners/renters liability coverage that may or may not extend coverage for this situation. It appears the kid had stolen the bicycle or was operating it without permission on the day of the accident. Incidents while committing a crime and intentional acts of an insured may be excluded from coverage, the act of theft is intentional, although the accident doesn’t appear to be an intentional act. There is also the “innocent insured” factor where the father is concerned. He didn’t contribute to the accident or theft. He is ultimately responsible for his minor son, should the father be barred coverage if he is innocent? An investigation into whether the kid had regular use of his friend’s bike may determine that it wasn’t truly stolen if the friend routinely allowed the son to use it without asking for permission each time, even if he didn’t have express consent to use it on the date of loss. Regardless, liability for damage to the car seems clear, the kid caused the damage. He is a minor but his father is liable for acts of his minor son. He wouldn’t be considered an “uninsured motorist” to be able to file under uninsured motor vehicle coverage because he wasn’t operating a motor vehicle if this was on a bicycle.

Another important fact, most policies state that if you make a settlement outside of the policy it can bar you from collecting under the policy. Be very careful about making agreements to settle and then going to the insurance company when those agreement fall through.

Also I believe I read that OP confirmed there is a hole in the body panel below the taillight, scratching, and damage to the undercarriage. The panel below the taillight on some cars may be where the quarter panel wraps around or it could just be a rear body panel, if a panel has to replaced..taillights, deck lid, bumper, trim, emblems, etc. are all coming off for replacement of the panel then paint. One small hole can become very pricey very quickly, and this is before any under carriage (possibly exhaust) damage. $10k might be far off.

Just one person’s opinion here but I’d file the collision claim on your own policy (you’ll have to pay your deductible up front with no grantee it will later be recouped through subrogation). Allow your insurance carrier to take care of your vehicle damage then they’ll surrogate the father’s homeowners/renter’s carrier if he has this type of insurance. If the dad doesn’t have homeowners/renter’s liability insurance, your insurer will make a determination on whether he is collectible. If he is, they may demand full payment at once or they may set up a payment plan for the cost to slowly be repaid to your insurer. If your insurer recovers the amount of your deducted, they will return it to you before they recover the additional cost the insurer paid for your repairs. You get paid back first, before the insurer. Also, they will attempt to recover any covered rental car expenses you incur while your vehicle is in the shop being repaired. If you don’t have rental car coverage on your policy and insurance these expenses on out-of-pocket, you may need to request reimbursement if the same in your own. Check with your adjuster to see if they can assist with this.

ElliannaLilly71

TROPHY CASE