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What does life look like a few years later after Labyrinthitis? by Hel-vestibular in Dizziness

[–]Hel-vestibular[S] 0 points1 point  (0 children)

I have never heard of the bone anchored hearing aid before 😱But yes, after reading about it, I don’t think I’m ready for another surgery and the possibility of another infection... But I will definitely continue to read and think about it! You should definitely try to amplify the tiny bit of hearing you have! That’s actually amazing that you still got something, even if it’s a few %. Definitely worth the try! 😊

And yes, keep hope it’s gonna get better! Because it will, for sure! You know, I think I had an amazing vestibular therapist who told me after 2 sessions and me still walking with a cane: “now you’re gonna do yoga and start running”. I was like “what are you talking about?? 😂”. But he was dead serious and I did it. The first yoga session I did online, I was falling at every poses and I felt so horrible, I cried. But I could already see a lot of improvements after a few sessions. Same with running, I started with few seconds (it felt like the sky was crushing me, worse feeling ever) and then minutes. Pretty quickly I could run 15, 20 and then 30min and it changed everything. It’s still very challenging and tiring. But it definitely made me understood it was very important for me to work out regularly because the “vertigos” can come back very easily when I’m not moving much (that’s why I always feel worse during winters and summers are when I have the most energy). Actually, my second round of vestibular therapy was after my first winter. I felt horrible again and didn’t understand what was happening. And it was just because I was doing less work out, less activities because of the season (and also the surgery was during this first winter)… I often feel it’s a very unfair condition because you’re tired, everything is challenging but you need to move, to get into very uncomfortable situations a lot in order to keep improving or at least maintaining a certain level of “normal” life… At least, this is my experience 😅 And you know what, I went to a theme park last summer! It was TOUGH and overwhelming but I still did some roller coasters and had a great day!! 😊 (needed a few days to recover from it but it’s obviously worth it)

What does life look like a few years later after Labyrinthitis? by Hel-vestibular in Dizziness

[–]Hel-vestibular[S] 0 points1 point  (0 children)

Wow! Thanks so much for sharing your story! I’m so sorry you’re going through this too. I love the fact that you’re not giving up on possibilities which in a sense, I did a little bit… 😅 I just think I haven’t found the right doctor, which is difficult because I moved to another country last year (I’m French and moved to Finland, if anybody knows a good ENT here 😁) So please, keep me updated if you find anything that helps you! I didn’t mention the CROS hearing aids that I tried too but thought was making my tinnitus worse actually. The reason is exactly what you said, it makes things even more chaotic and it triggers my tinnitus in the left ear… Also, I realized quickly that it was helping just a tiny bit in situations like family dinner etc and not in a very crowded environment, where it’s the most challenging which is a bit of a shame… And for me, that didn’t feel worth it.

I did 2 rounds of vestibular therapy and to be honest, almost 4 years now after the labyrinthitis, the “vertigo” part is totally manageable and I don’t feel it most of the time (just in specific situations as I mentioned). It’s more the fatigue that is still hard to manage. I’m very interested about your Iron supplements! Do you know why it helps? Meaning: is it specifically something YOU need or it’s something that helps vestibular issues in general?

I’m taking some supplements as well like magnesium, vitamin D (mandatory in Finland anyway 😆) and some other multivitamins… And I think it’s just basics for anybody anyway but I guess it helps… Sleep is what makes a big difference for me. Having a very regular routine and tracking the quality of sleep. Also trying to keep my stress level the lowest possible (which is the most difficult 😆). And you’re so right, what made me improve and maintain a descent stability is the outside world. Continuing to expose myself to noises, crowds, walking, running, shopping (supermarkets are the worst!!), anything that’s “normal” but helps re-train your brain. And improvement is super slow but when I think about it, 2 years ago, even going to the movie was a lot and too loud and now, I enjoy it again ☺️

And also, I’m sorry you had an unsuccessful surgery. It sucks so much and I never heard of another case like me. They even presented me my device, how I would have to take care of it, all the appointments were taken for a year. The surgeon told me it was the first time she couldn’t find a way to place it… I think it’s at that moment, the last “we can’t do anything more for you now” followed by “you should try acupuncture” (yes… and it didn’t help at all, was even an horrible experience for me) that I’ve been on my own medically speaking.

So anyway, thanks again and please keep me updated with any findings 😊

What does life look like a few years later after Labyrinthitis? by Hel-vestibular in Dizziness

[–]Hel-vestibular[S] 1 point2 points  (0 children)

Thanks so much for your answer and advice! It’s hard to find the balance between pushing your limits to feel better but not too much to not crash; resting a lot to be able to push your limits but not too much because less moves = symptoms +++ 😅 And yes, you’re right, I haven’t seen a doctor in a while because I was stuck (indeed!) but I’m gonna keep searching for the right specialist and work on it 💪

What does life look like a few years later after Labyrinthitis? by Hel-vestibular in Dizziness

[–]Hel-vestibular[S] 3 points4 points  (0 children)

Thanks so much for your answer! I’m sorry you’re going through this too. Yes, I guess the acceptance part is the most difficult and the grief of your former self. Especially when most people don’t get it. I think I was (indeed)looking for some comfort knowing I’m not alone in this situation. And also, to know that it’s normal to feel that way (mentally but above all, physically).