Hello,

I’m looking for other people having the same symptoms as me, because my diagnosis is not very clear. My first dizziness occurred in March 2023 and increased until very disabling attacks began in April 2023. These attacks were characterized by severe rotational dizziness (the vision which sweeps very quickly from bottom to top in clockwise rotation) amplified by any movement of the head. I had to lie down for hours with nausea, frontal headaches, general exhaustion (inability to walk even when the attacks stopped).

My ENT found a pressure problem in the right ear (T-flag test carried out at Bordeaux University Hospital), which would explain these attacks which resemble Ménière's attacks.

I also had BPPV which generally followed these Ménière's attacks, but also on other occasions in an isolated manner.

Since January 2024 I no longer have these major attacks of rotational vertigo, nor BPPV, but I feel permanent instability when walking and great difficulty with rapid movements, and I also have spasms (sort of startles, especially in the upper of the body), as well as a permanent "mental fog" (feeling of having expanding foam in the head, very tiring, it is a struggle for each action). I also systematically have pulsatile tinnitus in my right ear (hissing sound following the heartbeat) when I go from lying down to standing (for about 10 seconds). Additionally, I have photosensitivity and pain with eye movement (especially when looking to the sides and up/down).

These symptoms get worse with fatigue (which increases throughout the day), and I sleep a lot more than I used to (including naps).

It should be noted that I do not have hearing loss.

My vestibular physiotherapist told me that the spasms could be due to my inner ear problem, as could the fatigue. But my ENT thinks there is a problem that would be more neurological. Most of the tests were negative: brain MRI, EEG, cervical Doppler ultrasound, CT scan, blood tests.

However, I tested positive for Lyme Disease (Elisa + Western Blot + lumbar puncture). I was treated with antibiotics for two weeks, in the hypothesis of neuroborreliosis. This treatment did not cure my symptoms, medicine considers that there is another cause for my condition. Doctors raise the hypothesis of long Covid.

In terms of taking medications: I tried tanganil (a few weeks), Betahistine (several months), glycerol, diamox, as well as a ton of food supplements, vitamins, etc. The effects, if there were any, were subtle...

Anyone with similar symptoms?

Could a pressure syndrome explain all of my symptoms?

Details: I am 36 years old and was previously in good health. I was vaccinated for covid and had it twice (strong flu-like illness both times without respiratory problems but I experienced loss of smell and phantom smells of gasoline, photosensitivity and severe pain behind the eyes). These phantom smells have come and gone since then. The eye pain, which persisted for several weeks after my two infections, reappeared with the attacks of vertigo.

I have stopped all professional activity since April 2023. I can no longer drive.

Thank you for reading and for your answers.