Dizziness since April nothing helps!
Hi everyone,
I really hope someone here might read my post and recognize themselves in it. I’m simply looking for people who have experienced something similar and maybe eventually found out what was behind it. I’m getting pretty desperate because I’ve been dealing with these symptoms for months, and they sometimes completely take over my everyday life, while the examinations keep coming back mostly normal, or when something is found, I’m told that it doesn’t explain all of my symptoms.
I’m a 20-year-old woman and this all started in April 2026. Back then, I had what felt like a circulatory collapse. I had been out partying the evening before, and alcohol and cigarettes were involved. I fell to the floor, everything went black and purple, and I couldn’t move for a few seconds. When I tried to get back up, it happened again immediately. I didn’t injure myself. The paramedics suspected orthostatic hypotension.
Yesterday, for the first time since April, I had that exact feeling again, just as strongly. I genuinely thought I was about to collapse.
Since then, I have had a practically constant, very strange swaying dizziness. It’s not classic spinning vertigo, but more like feeling as if you’re on a boat or as if the ground is giving way underneath you. It reminds me of the feeling you get when you step out of an elevator and it seems to drop slightly one more time. It’s worse when standing and walking, and sometimes I feel it with EVERY single step.
Depending on the day, I also have brain fog, concentration problems, fatigue, pressure and heaviness in my head, sometimes blurred vision, tinnitus in both ears, additional pressure in my right ear, tingling in my arms, legs and face since June, neck and upper back pain (sometimes sharp/stabbing), recurring severe tailbone pain, and jaw problems due to TMJ dysfunction. The tingling has become much less frequent by now.
During worse phases, I don’t feel like myself at all. It feels as if I’m dreaming or not really there, together with the dizziness. Even while lying down, I sometimes feel as if the room is slightly tilting or moving back and forth. At night, I sometimes get a feeling similar to briefly falling, except that my body and head suddenly feel very light and foreign. I really don’t know how to describe it any better. For a while, the dizziness was always worse indoors, so as soon as I entered a building it suddenly became much stronger, while it was much better outside. Then that completely disappeared for a while and the dizziness became independent of where I was. Now it varies from day to day.
One thing that still really confuses me is this: I had already been dizzy for about a month when I used a nasal spray. Afterwards, I also used a corticosteroid nasal spray for a longer period, and suddenly my symptoms were practically completely gone for about four weeks. This happened after the very first spray of the regular nasal spray. Then the symptoms came back quite suddenly and even worse than before. After starting the spray, I also sometimes had a feeling of something running inside my right ear, which initially made me think there might be a ventilation problem. I am actually having that strong running sensation in my right ear again now.
I have been to several ENT doctors by now, including inner ear and balance testing. For the most part, everything was normal. At one point, a possible ventilation problem was suspected, but nothing that should explain all of these symptoms. Neurologically, nothing abnormal has been found either.
My brain MRI showed an approximately 4 × 3 mm cystic-appearing lesion in the tectum area, without contrast enhancement and without any obstruction of the cerebrospinal fluid flow. A follow-up MRI was recommended. According to the doctors, this does not explain my symptoms.
My cervical spine MRI showed a flattened cervical curve and a small cystic structure at C6/7, possibly contacting the C7 nerve root, but no clear severe compression. The neurologist also said that this would not explain my symptoms.
I was also diagnosed with TMJ dysfunction. I have pressure and tension in my jaw and a very noticeable rubbing/grinding sound on the left when I push my lower jaw backwards. I have had three TMJ treatment sessions so far, but I actually feel like it has gotten worse because of them. At the beginning of September, all four wisdom teeth were also removed because I thought they might be contributing to my TMJ problems and possibly therefore to the dizziness. It didn’t improve anything. I also wear a night splint.
Something else I find very noticeable is that playing piano makes my dizziness worse. If I sing while playing, it can become significantly worse.
I have also had some very low blood pressure readings at home. My previous bloodwork was normal. Today I had blood drawn again, including a full blood count and thyroid levels. I’ll add the results once I have them.
I don’t know if this is relevant, but I had my ears pinned back in two surgeries when I was 12 and 14. The first one didn’t turn out very well cosmetically, so I had to have another surgery. Maybe that somehow has something to do with it, I really don’t know.
At this point, I just feel like I’m going from one examination to the next and still have no idea what is actually wrong with me.
So my question to you is:
Does anyone recognize this exact feeling? This constant swaying like being on a boat, the strange dreamlike feeling, feeling like you’re not really there, sensations of movement even while lying down, combined with neck, jaw, ear and circulation/blood pressure problems?
Has anyone also started with near-fainting or orthostatic hypotension and then had symptoms like these for months afterwards?
Or has anyone experienced this temporary, complete improvement after using a nasal spray?
I’m really not looking for a remote diagnosis. I would simply like to hear from people who have been through something similar and eventually found a connection between their symptoms, or who found a particular examination or medical specialty that ultimately helped them.