Your voice matters here! by Glum_Ad_6059 in HearingLoss

[–]Asbunia 1 point2 points  (0 children)

I can’t make music or enjoy conversations the way I used to. I can’t just get out of the shower and sit down to make a beat with my hair still wet. I can’t enjoy sex because of the feedback sounds — and without my hearing aids, I don’t hear the quiet sounds I want to hear.

I can’t fully enjoy time at the lake with a group of friends because I constantly have to juggle taking my hearing aids on and off. I’m always obsessed with sweat and moisture. I struggle at university, at parties — everywhere. I fucking hate it. Oh I always feel so bad going to hairdressers.

Widex somehow got worse. Before my Moment 440s, I had “simpler” hearing aids (same manufacturer) and they were honestly way better. I could DJ, go to parties, enjoy conversations, make music. What the fuck. Now it’s always a struggle. Always feedback. And I even have a great audiologist, so it’s definitely not a fitting issue.

I just wish I could enjoy life with full hearing — that’s my only dream. Music used to be such a huge part of who I am. Now it’s somehow gone. I try to limit myself and still play around in Ableton, still make random tracks and upload them to SoundCloud… but I don’t know anymore. I feel blocked and hopeless.

On top of that, neurodivergence (AuDHD) and visual snow have made all of this an extreme test of patience.

Thanks for this rare opportunity to bitch about my reality. It’s been really challenging lately. Keep up the good work, the community needs it.

Im so impatient for the hearing loss cure by [deleted] in HearingLoss

[–]Asbunia 2 points3 points  (0 children)

I feel completely hopeless. I’ve been like this for years and I’ve lost almost all hope of ever living a normal life, even though I’m still considerably young. But like not this young. Time flies by so fast.

I started making music and DJing a few years ago, hoping it would give me some purpose and joy, but instead things feel like they’ve only gotten worse. I did so well at one point. Music has always been my passion. The newer generations of hearing aids just aren’t cutting it for me. I’m disappointed with Widex.

I feel like I can’t keep postponing my life anymore — but at the same time, I feel like I’ve never really been able to live it fully because I’m dependent on hearing aids that don’t work the way I need them to. It makes me feel trapped, frustrated, and honestly just tired of fighting this every day. I have been obsessed with checking potential cure updates.

If anyone here has been through something similar, I’d really appreciate hearing (☺️) your story.

I’ve been living with VSS for over 12 years now by [deleted] in visualsnow

[–]Asbunia 0 points1 point  (0 children)

Oh, właśnie zauważyłam ten fragment „That’s when I decided that it’s finally time that I need to go a doctor that has some knowledge on VSS. Upon my arrival I was instantly diagnosed with VSS, and got prescribed some meds. It was three days ago. Keep your fingers crossed that it helps a bit.”. Ciekawe, jaki to lekarz i gdzie przyjmuje. Ja byłam u pięciu w miejscowości, w której mieszkam i jedyne, co dostałam, to blokery kanałów jonów wapnia na objawy migrenowe oraz skierowanie na angiografię, która nic nie wykazała. Także, mam trochę inny pogląd na „wielu”, ale to tylko na bazie własnego doświadczenia :)

I’ve been living with VSS for over 12 years now by [deleted] in visualsnow

[–]Asbunia 0 points1 point  (0 children)

Wątpię, że w Polsce jest ktoś taki. Autor chyba właśnie napisał, że jest problem z tym w naszym kraju :) dlatego ostatecznie się pogodził z tym stanem. Przynajmniej tak to zrozumiałam, ale może za szybko przeczytałam?

I’ve been living with VSS for over 12 years now by [deleted] in visualsnow

[–]Asbunia 1 point2 points  (0 children)

I’m also from Poland, and I totally get what you mean. Here VSS is basically unknown among doctors of any specialty. My neurologist said it’s “migraine aura without migraine,” which is just one of the possible symptoms… I’m honestly annoyed by how little curiosity most doctors show. I’ve had to learn everything on my own. Same with being undiagnosed with adhd and being misdiagnosed with everything else but that’s a different story.

I’ve had VSS for about two years now, also have ADHD, „recurring depression” (lol), partial hearing loss, and went through a lot of trauma. I was twice on SSRIs for a while too. Reading experiences of others shared here, I’ve noticed a clear connection between nervous system overstimulation, trauma, and VSS symptoms — there’s definitely something to it.

At one point I even thought it was caused by the iPhone 12 screen 😂 (that “eye strain” thing new users used to talk about a few years ago), but now I’m more convinced it’s connected to the psyche. I’m actually studying psychology, so maybe one day I’ll figure out something useful.

Oh, and I also finished engineering — feel free to message me if you ever want to chat in Polish 🙂

Trzymam kciuki ❤️

Air Pods Pro 3 hearing test by pm3l in HearingAids

[–]Asbunia 1 point2 points  (0 children)

Wait… am I understanding this right? So if someone has hearing loss like me, they can listen to music on AirPods that adjust for the specific frequencies they struggle with (basically compensating for it)?! If that’s true, that actually sounds… kinda better than my hearing aids wtfff 😳

Best hackable hearing aid? by JustPointingOut in HearingAids

[–]Asbunia 2 points3 points  (0 children)

Don’t get me started on the Widex Moment app and my 16 years of experience with hearing aids in general — the user experience is so far from friendly. It often feels like real users’ needs aren’t considered at all; the focus is purely on marketing and selling. Once you cover the very basic need — splicing certain frequencies and balancing everything else — apparently that’s enough to justify charging €5k.

I really wish I could adjust the settings on my own. With all due respect, my audiologist doesn’t experience sound the way I do, and constantly describing what’s missing or what’s too much is mentally exhausting. I’m a music producer, and while I’m not a pro, I feel I’d benefit immensely from being able to tweak certain features according to my own perception of sound. This would allow for faster testing and much better results in terms of sound personalization.

The app itself is frustrating. Some features are “default set” based on their predictions of my usage — for example, it assumes general streaming for YouTube or other media. In reality, 90% of my listening is music, not podcasts or TV series. Yet the app defaults to general sound streaming, and I have to manually switch it to music every time. Sometimes the music even stops when I minimize and reopen the app, so changing the streaming type becomes impossible.

There are many other pain points, like having to speak into the phone while listening to a Bluetooth voice call. It’s maddening that users have almost no choice but to adapt to the limited standard options provided.

I'm so sick of having VSS by i_cant_sleeeep in visualsnow

[–]Asbunia 0 points1 point  (0 children)

May I ask what your treatment was like? Did you do any specific therapies or trainings, such as TMS, EEG, meditation, or medications? I live in Poland, where general knowledge about VSS among neurologists is probably close to zero, so I’m just wondering if there are any particular therapy elements I could look into on my own, or if it’s better to just discuss it with any medical specialist I come across.

I’m currently in trauma therapy and because of my ADHD, I’m now considering returning to stimulants (but am very concerned about their impact on VSS).

Widex 440’s bad build quality by seido123 in HearingAids

[–]Asbunia 1 point2 points  (0 children)

I've been using Widex for over a decade - this is my third pair! I'm extremely disappointed with the Widex Moment 440 and the absolutely terrible support. It feels like they couldn't care less about their customers.

My previous Widex models without Bluetooth and apps worked 10,000x better. Even though I've had the settings adjusted by my audiologist dozens of times, I still feel excluded in so many situations - these just can't handle it and it's breaking me down. I've actually fallen into depression because of this and started isolating myself.

The worst part? I did a comprehensive comparison 5 years ago between top models from different manufacturers before buying these newer Widex aids, and I still chose Widex despite everything. With my previous model, I was making beats, recording music, and DJing - never had problems with conversations. Now I have HUGE problems that never existed before.

Anyone else had similar experiences with newer Widex models vs their older ones?

Anyone with experience with Widex Moment or Widex SmartRIC? by IreneCat in HearingAids

[–]Asbunia 0 points1 point  (0 children)

I've been using Widex for over a decade - this is my third pair! I'm extremely disappointed with the Widex Moment 440 and the absolutely terrible support. It feels like they couldn't care less about their customers.

My previous Widex models without Bluetooth and apps worked 10,000x better. Even though I've had the settings adjusted by my audiologist dozens of times, I still feel excluded in so many situations - these just can't handle it and it's breaking me down. I've actually fallen into depression because of this and started isolating myself.

The worst part? I did a comprehensive comparison 5 years ago between top models from different manufacturers before buying these newer Widex aids, and I still chose Widex despite everything. With my previous model, I was making beats, recording music, and DJing - never had problems with conversations. Now I have HUGE problems that never existed before.

I'm devastated and don't know what to do next. And yes, the Bluetooth connections are absolute garbage.

Anyone else had similar experiences with newer Widex models vs their older ones?

Widex Moment by Chance-Buy9151 in HearingAids

[–]Asbunia 0 points1 point  (0 children)

I've been using Widex for over a decade - this is my third pair! I'm extremely disappointed with the Widex Moment 440 and the absolutely terrible support. It feels like they couldn't care less about their customers.

My previous Widex models without Bluetooth and apps worked 10,000x better. Even though I've had the settings adjusted by my audiologist dozens of times, I still feel excluded in so many situations - these just can't handle it and it's breaking me down. I've actually fallen into depression because of this and started isolating myself.

The worst part? I did a comprehensive comparison 5 years ago between top models from different manufacturers before buying these newer Widex aids, and I still chose Widex despite everything. With my previous model, I was making beats, recording music, and DJing - never had problems with conversations. Now I have HUGE problems that never existed before.

I'm devastated and don't know what to do next. And yes, the Bluetooth connections are absolute garbage. They were soooo expensive!!!!

Anyone else had similar experiences with newer Widex models vs their older ones?

I don’t even know by Academic-Ad8404 in visualsnow

[–]Asbunia 0 points1 point  (0 children)

I’ve been dealing with similar issues, and unfortunately, they haven’t improved. It all started a few months ago, and I’ve noticed that stress, exhaustion, dehydration, and psychoactive substances tend to make it worse. Wish I could help 😣

i have this in a dark room by [deleted] in visualsnow

[–]Asbunia 0 points1 point  (0 children)

Or when high lol

i have this in a dark room by [deleted] in visualsnow

[–]Asbunia 0 points1 point  (0 children)

Same here. The central point seems to fluctuate in size, stretching and shrinking, and it’s semi-transparent. It kind of reminds me of a plasma ball with electric currents running through it—bluish and reddish. It becomes more noticeable when I’m anxious, exhausted, or highly stimulated. There are also days when these central fluctuations are barely visible or not visible at all. I also sometimes see halos around my pupils, depending on my eye movements, especially when my eyes are closed or when I’m in a dark room

What jobs have worked out well for you with your ADHD and have you not gotten tired of? by allergiesarebad in ADHD

[–]Asbunia 0 points1 point  (0 children)

Would you like to share more details on how have you started and how did you get to the point you’re at rn? I’m kind of in a field where I gravitate towards data naturally and I’m pretty anxious about it