I’m in the midst of a 6-month dizzy spell. It’s not vertigo, it’s more 24/7 brain fog. I had some unsteadiness for a while but after balance therapy it’s now only like I’m a little drunk or have a head cold but without all the other symptoms. Like I’m not fully in my body. This is my third experience with this. My first diagnosis was VM, but I’ve gotten different diagnoses from seemingly good doctors, not sure who to trust. Looking to see if anyone here has similar experiences who can help.
It begins the same every time. If I get bad cold or sinus infection that lasts a couple weeks and the congestion gets into my ear (i.e. it gets blocked up), once everything heals, I’m left with an odd lightheadedness that lasts for months. I don’t get vertigo, I never fall or throw up, I don’t have fullness…I just get brain fog, fatigue and light nausea. I’ve had tinnitis 24/7 since childhood due to ear drum ruptures and notice slight changes here and there but nothing crazy. My hearing is generally very good, it doesn’t really change, and on the lowest frequency I have a tiny bit of loss but ENTs didn’t seem concerned. This has happened in 2010, 2015 and 2016.
The first time I got stick it lasted 2 months and went away on its own. The second time it lasted a little longer and went away around the time I was diagnosed by a neurologist with Vestibular Migraines and treated with Topamax. I’m not sure if the medication helped or if it just burnt out quickly after. I never had bad headaches, occasionally tingling. I stayed on the drug 8 months, went off for a couple months, then got a bad infection again last December. Went back on Topamax and didn’t help this time.
I saw a slew of docs, got a ton of tests (MRI/CAT/Balance) and none of them agreed on anything. A neurologist said Mal de Barquement (it’s the only one I’m sure it’s not and two other neurologists agreed).
A respected but aging Neurotologist diagnosed Secondary Hydrops (not full Meniere’s) and suggested I lay off sodium.
The dizziness expert at the House Clinic in Los Angeles (also respected) diagnosed PPPD (peristant postural perceptual dizziness, which used to be CSD. He thinks I have an ear issue that gets inflamed when I’m ill and that it sets my brain off. I do have an issue with the ear that keeps getting infected, it plugs up on plane flights, it gets water inside very easily, I’ve had swimmer’s ear in it, etc. He aslo mentioned he didn’t think non-Meniere’s Hydrops was a thing and feels strongly I don’t have Meniere’s.
I did a sodium diet and vestibular migraine diet (no MSG, caffeine, etc) at the same time and felt better after a month but not fully healed. One of them helped though it seems. I started cheating on the weekends after and have been up and down since, but still generally improving. I recently went on microdoses of Effexor (like literally opening caps and counting pellets, 2 then 4 then 8 then 16) and felt slightly more relief from that. I did balance therapy and they mostly worked on my neck, which was incredibly stiff. I am no longer unsteady on my feet but can’t kick the brain fog part.
I do some food writing and focus on Italian food so the sodium thing is a huge fear. I have been strict during the week on sodium and more lenient on the weekends, and sometimes I get brain fog a couple days later. Sometimes. I am still off caffeine and try to avoid MSG because it seems like that could be a factor. But it could also be that I’m doing a lot more activity on the weekends and overloading my brain as my Balance PT guy suggests.
I really don’t know. I am going to try the sodium diet again to see if I could get all the way better, but would love to know if I’m missing anything. If you got all the way down here, thanks for reading.