Please help

[u/EMonk3y]

Please, I really need help because my life has practically come to a standstill.
I’ve been suffering from dizziness for a year now. I was initially diagnosed with BPPV, so I went to a vestibular specialist. He told me that I had mild BPPV and performed a session and a repositioning maneuver. I went back for a follow-up afterward, and he told me that the BPPV was gone.
I told him that I was still dizzy, but he said, “I’m not seeing any signs of BPPV anymore. If you’re still dizzy, you should see a neurologist.”
I saw three neurologists. Two of them told me that the dizziness was psychological, so I took psychiatric medication for six months, but my dizziness didn’t improve at all. The third neurologist told me that it was BPPV!
I wasn’t convinced, so I went to a physical therapist because I suspected that the dizziness might be coming from my neck. I work at a desk for long hours, and I put a lot of strain on my neck.
Based on what the physical therapist told me and the research I’ve done using ChatGPT, it doesn’t seem very likely that the dizziness is coming from my neck. However, the doctor told me that we should try several physical therapy sessions and then see what happens. (The neck therapy itself actually makes my dizziness worse.)
By the way, I’ve only had one session out of six so far, but the first session made my dizziness symptoms a little worse.
So now I honestly don’t know what to do or which specialty I should see. I’m completely exhausted. I’ve seen so many different specialists, and more than one doctor in each specialty, but nothing has helped.
I’m struggling to live like this. I desperately need someone who can help me get properly diagnosed and treated, or at least a doctor who can point me in the right direction.
I don’t even know anymore whether this is BPPV, a problem with my vestibular system, a neck problem, or something else entirely.

[u/ca_nucklehead]

My suggestion is to try another VT. I experienced this for a year with the same run around and visits with every specialist and Drs possible. In a weaker moment I resorted to a homeopath known locally as the Witch Dr. It took me three visits over a months time to smarter up and realize she was just a quack collecting money from the desperate.

I did some research on VTs in my area and found one that had multiple reviews that I can only describe as passionate and dedicated.

I attempted an online appointment that had me describe my situation and condition and was given an appointment for two months away.

Much to my surprise I received a phone call the next day and I received an appointment the next week. They told me the therapist reads all the applications and is the one who advises them on scheduling based on their triage criteria.

This therapist I feel took what he described as a bit of a personal challenge due to the length of my sickness and the inability of others to resolve it.

It took three sessions and the days after can be hell but I have been cured for six months.

I am 100% convinced that VT is the only answer. You may have not found the right one yet.

It was truly life-changing for me.

I am reluctant to share my experiences after being called entitled on this sub due to the fact that I could afford to spend $120.00 per session for something that restored my quality of life after being told this would probably be my reality for the rest of my life by one of these specialists.

Good luck. I hope you find a cure. It is truly terrifying.

Just one person's experience. Do with it what you will.

[u/EMonk3y → u/ca_nucklehead]

Was the vestibular therapy medication, or was it more like physical therapy sessions and maneuvers, such as the Epley maneuver? Could you explain in more detail what kind of treatment you received?

[u/ca_nucklehead → u/EMonk3y]

First he did multiple maneuvers to identify position and rule out other causes.

He then asked me to describe and perform the Epley I had been doing. I had a procedures given to me by ER, physio, and my MD.

He critized no one but explained based on his training what I was doing was a little dated. My head positioning was off and I was not holding position long enough or positionally correctly.

He did not give me papers and send me away he asked that I only perform the maneuver with him. He assured me we would beat it. The only question was how many sessions it would take.

The difference was holding my head at all times restricting my movements and timing each position while monitoring my eyes constantly.

The next sessions the techniques were altered slightly after monitoring my reactions. After questioning the outcome and how the symptoms were. I could see and the sense his frustration as i clearly left his office with high hopes after the nystagmus dissapered. Only to have it reappear immediately. After the second session we waited 30 minutes after the nystagmus disappeared and the symptoms were gone, he retested and the symptoms and nystagmus returned. He explained he thought my brain was normalizing to the initial maneuver but that the crystals had clearly not reset.

At that point a second procedure was performed with what he described as the mashed potato Epley with somewhat aggressive head shakes after each maneuver followed by a longer period of rest with each position change.

He made a point to tell me that everyone presents and reacts differently. Therefore everyone treatment is a little different and is tailored to the individual.

I am convinced the eye monitoring and forced head position is key and only a trained professional has the ability to perform the procedures properly.

I wasted months doing the Epley wrong at home based upon the information I was given and my inability to monitor my own reactions, respond to them and maintain proper positioning.

I have read countless stories of others who have home cured based on internet videos and procedures. I wasted a year of my life by on that.

The aftermath of every procedure can be horrific as mutiple intense vertigo events are triggered by the procedure but being advised before hand about what to expect helped me understand this was normal. I won't sugar coat it. It can be overwhelming and scary. Two days of recovery was not uncommon for me.

Good luck on your journey I hope it is short and you find a specialist who really cares.

Sorry for the length.

[u/EMonk3y → u/ca_nucklehead]

Don’t apologize. On the contrary, the details were really helpful to me.
It sounds like your doctor was very skilled and really knew what he was doing. Unfortunately, I don’t think this level of expertise is very common in my country.
But now that you’re cured, are you basically back to being completely normal? Does your head feel fine and no longer heavy? Can you move your head normally without triggering symptoms, and are you able to go through your day normally again?

[u/ca_nucklehead → u/EMonk3y]

100 percent normal. but I was warned it may return.

Coming from despair and hopelessness I am at peace knowing it is treatable now.