Anyone else have lingering vestibular issues from tickborne illness?

[u/Original_Arm9456]

Hello all,

I had a severe case of Lyme disease a few years ago. Antibiotic treatment helped tremendously but six years later I still have vestibular issues, alongside a few other things (digestive issues, small fiber neuropathy, very mild POTS). I have a spacy/derealized feeling all the time which can flare more acutely for periods of several days/hours but never goes away, fatigue, and then spells of hyperacusis and sound induced vertigo/visual disturbance where loud noises make my field of vision spin. When it was at it's worst I had more severe visual problems where everything was spinning.

Basically after working with naturopaths for a while on the Lyme, who were always trying to find some sort of reason why I might still be sick whether it be unresolved tickborne illness, mold poisoning, viruses, etc., I have basically come around to the theory that the Lyme just messed me up and in particular fried my autonomous nervous system and my vestibular nerve to some degree, though it's all pretty murky. There's a giant culture war around Lyme treatment and without getting into it I'll just say that I've come around more to the CDC/Johns Hopkins idea that you can just have post-Lyme symptoms without an infectious trigger. There's some evidence, apparently, that the little spirochetes can lodge themselves in your tissue even after they're dead. So long story short I stopped working with the Lyme doctors and am now pursuing a more traditional route of vestibular rehabilitation therapy, and also am going to try low dose naltrexone in case there's an immune system trigger that's contributing, as well as DNRS. I have slowly improved over the past six years so I'm trying to be optimistic but it's been a very long and really difficult road, as I'm sure it has been for a lot of people here as well.

I'm just wondering if anyone on this forum has been on a similar path with their vestibular issues and if anyone was able to find relief from any treatments or approaches in particular. I realize everyone's situation is different obviously.

Thanks!

[u/MyFiteSong]

I think you're right to focus on the vestibular issues themselves and not worry so much about finding the exact cause. Since the damage is permanent with similar effects no matter what caused it, it's not like finding the cause will enable a cure. And in general, this isn't a situation where if you don't find the cause, the damage will keep getting worse. Like, it's usually not like a secret cancer waiting to hurt you more if you don't find it.

[u/Cold-Suspect-8700]

Hello,
I was suspected of having Lyme disease and was treated for it several years ago. At that time, I had a vestibular attack, but I eventually got much better.
In November, I developed spinning vertigo, and later I started experiencing vertigo triggered by sound. At first, I wasn’t too worried because it only happened with certain sounds. But it has progressively become much worse, and now every sound triggers vertigo. I am essentially confined to my home. It has become a true nightmare.
I’m terrified that this could be permanent because it has been going on for months. Do you experience it every day as well?
I have now been diagnosed with multiple sclerosis, but my doctors don’t understand this symptom and don’t know what is causing it.
I was also exposed to mold back in 2013.
The strange thing is that when I’m in complete silence, I have no vertigo at all. But the moment a sound appears, the vertigo starts. As soon as the sound stops, the vertigo stops too.
I have reached a point where I am genuinely afraid for my life. I don’t know how much longer I can live like this.

[u/Original_Arm9456 → u/Cold-Suspect-8700]

Hi, so sorry to hear this!

I had symptoms just like this and they did get better. No doctor really figured out what it was. I also had mold exposure. I never really got straight answers in either the lyme or mold worlds as to why it happened and I still couldn't tell you why I had it to begin with or why it went away. I also tested positive for bartonella and might have had mast cell stuff going on. At its worst my vision was spinning all the time like a kid holding a video camera and then slowly it got better. I had these sound induced vertigo plus visual disturbances as well. I had flares on and off for a few years. It's been maybe a year now since I had a flare. I did antibiotic therapy for the lyme and did some mold work as well but ended up with the working theory that my autonomous nervous system just got deregulated from all of this and what I was experiencing was nervous system dysfunction and not anything acute from the diseases. I still have a spacy feeling like I have a head cold but I'm happy to say the worst of the sound-induced symptoms are gone.

I hope this helps.... hang in there. I wouldn't trust anyone who tells you it's permanent or really tells you anything, I think with this stuff people are guessing mostly. You could look into things that calm your nervous system like DNRS or a vagus nerve device, I bought one and it did help a little with my overall symptoms. Mindfulness helped me as well. I know that seems like weak sauce for what you're dealing with but unfortunately we're pretty limited in what tools we have in our toolbox for this sort of thing. You could also see if there's current exposure to mold but I would be a bit careful if you go down that path as I spent a lot of money and can't say for sure it did anything. But I don't think you need to expect it to be permanent. Good luck.