Tinnitus Reactivity and Hyperacusis Have Gone Down — Spikes Are Worse

Hi all, I've been here for almost two years now but I don't post often. The reactivity factor of my tinnitus and hyperacusis has significantly reduced for around two months now, but the intensity and frequency of the spikes has increased and continued to worsened. I don't really understand what this means and has been concerning me for where I may be heading.

For about a year and a half my tinnitus would spike easily if I listened to white noise, a box fan, rain, sat at a restaurant, basically anything in that spectrum. Also, since January of this year I started having consecutive "spiked" days where it's piercingly loud and would usually take 3-4 days to go back to baseline. Now the reactivity has improved a lot and these sounds have a lot less effect on my tinnitus. But the spike pattern has worsened to 3-4 "good" days and back to 4-7 days of piercingly loud ringing. This pattern is VERY consistent, like my brain is on some kind of schedule, and it drives me nuts.

Also, since I took one dose of prescribed 75mg Diclofenac for my back 2 months ago (which resulted in a horrific two week spike), my left ear has been experiencing mildly noticeable distortion.

I'm getting improvement in one way where the reactivity is significantly reduced and hyperacusis is essentially nonexistent, but worsening at the same time with this super consistent spike pattern. I still have not figured out why these spikes happen. Has anyone experienced anything like this before? It's really been getting me down and I feel like I am worsening. I'm becoming more and more socially withdrawn because of it and I hate it so much.

I honestly really wish I could go back to last year where I didn't have crippling spiked days, and more reactivity/hyperacusis. At least I knew what to expect and could control and manage my tinnitus much better that way. But thank you for reading.

 

How bad was your hyperacusis and how long did it last?

 

Not as bad as others here but bad enough that I would feel pain from loud vehicles, dogs barking, dishes banging together, and even the "s" sound from some people as they talked. Probably lasted a year and a half, but over the summer it gradually improved and now I don't feel any pain from those things, not even from a dog barking.

But the thing that makes no sense is that back when I had hyperacusis, I never got the crazy spikes that I get now.

 

So I've been experiencing even more worsening the past couple of weeks. I can't figure out why and what's going on. My left ear (which is where I experience less problems overall) has been having a much louder baseline, almost like a metallic static and some other new sounds like metallic tapping. It's starting to happen in my right ear too now.

Also 3 days ago my left ear started doing the thing where it feels like fleeting tinnitus but the sound never comes, and the sensation stayed for the rest of the day. Since then my spikes haven't really settled and the reactivity has returned in both ears. And I had a really weird vertigo sensation for a few seconds the other night. What would cause these new strange problems? I have been indoors this entire time and haven't experienced any moderate sound exposure or used headphones. I haven't been drinking alcohol either.

@FGG, would you like to weigh in? It would mean a lot. I'm getting really nervous about these progressions and I've seen doctors and they don't give me any light of day whatsoever. Thank you so much.

 

Hi. I'm definitely not an expert but I can just tell you what I would do. I know doctors are often not helpful but do audiograms give you a spike? It might be useful to see if there are any changes and if you had acute losses, steroids might be helpful.

Sometimes also, low frequency losses (or hydrops) can make things sound "tinny" but I'm not sure if that's what you mean. It's worth ruling out though, even if that means getting a second opinion.

Try not to stress if you can. There is evidence that the more you produce neuroexcitability acutely (and stress contributes to this glutamate imbalance), the slower recovery is.

 

Yeah audiograms don't give me spikes, thankfully. My last one was back in May so I could get another one to see if anything changed. My latest audiogram actually had better results than my first one in December 2019 but I think that's due to normal fluctuations in hearing.

Everything sounds OK actually. However I get these weird metallic sounding distortions in my left ear from certain sounds. I'm not quite sure how to explain it, but it's something that has been developing especially recently. And the tinnitus characteristic has been changing to a metallic sound.

I understand you're not an expert, but I respect your insight as you have been through a lot and you're very knowledgeable about what might be happening when you experience sudden hearing loss, metallic sounds, vertigo, etc. Thanks for your input, it helps a lot.

 

How are you now, @Flyingsheep?

Has the spiking and reactivity improved anything?

 

How are you doing now?

 

Still the same pattern of 3-4 day long spikes of severe tinnitus before it settles down to a mild baseline fuzz for another few days. Still have no idea what triggers it. Every once and a while I get a "bad month" where it's basically relentless for most of the days of every week and I get all kinds of new sounds. Still has a drastic effect on my ability to work since I never know when I wake up in the morning if it's going to be a good or absolutely terrible day. It's always a coin flip.

I'm seeing a doctor in functional medicine now and I expressed to him how nasty it gets and I'm just trying to find answers. I also experience a lot of chronic fatigue now and seem to get a migraine every week. He ran a million tests and I'm waiting on some results. Costs tons of money but I'm running out of options.

 

Just an update...

I had some tests done by that doctor in functional medicine, not because of tinnitus but because of rapidly increasing chronic fatigue and other issues. It turns out I have ridiculously low vitamin D and B12 levels and have super low Folate along with the MTHFR double gene mutation. A heavy metals test revealed some high levels of mercury.

Unfortunately this doctor ignored the fact that I have amalgam fillings and gave me WAY too much DMSA for the heavy metals test (1500 mg) which made me sick. Since then my tinnitus characteristics changed. The reactivity is practically gone, even hardcore white noise hardly gives me a spike, and the super intense weekly spikes I usually get have been a lot less. They still happen from time to time but it's been a month now and this is how it's been.

This might be telling me something, that my tinnitus issues could have stemmed from mercury exposure. The reason I'm considering this is because that insane DMSA dose probably mobilized some mercury (and unfortunately also mobilized some in my teeth), and my tinnitus has immediately changed. The rabbit hole goes deeper because 3 years ago when I developed tinnitus, I was taking MSM sulfur for 3 months which apparently you should AVOID if you have amalgam fillings because sulfur ALSO mobilizes mercury, and it's possible that doing so gave me more mercury exposure which started the tinnitus.

This could be a far cry but it's hard not to see a clue here.

Unfortunately the medical system is so jacked up that trying to get help can still harm you, such as that doctor overdosing me with DMSA while having amalgam fillings, so the only way really is to be as informed as you can and be your own doctor and do your own research. I feel like my next step is to seek getting those fillings removed safely and then once it's confirmed all traces of amalgam are gone, get on a safe chelation protocol to try to remove mercury from my system.

Hope this helps someone out there.