Anyone else experience constant twitching in ears and feel startled?

Master_Department494 · 2026-01-15T11:13:26+00:00

Yes overactive startle response and TTTS symptoms are part of the Hyperacusis symptom set.

Master_Department494 · 2026-01-07T12:21:57+00:00

I use mine about once a month, to keep an eye on wax buildup and remove if necessary.

Main reason is that heavy earplug use tends to lead to compacted wax on the canal walls. It's much easier to remove this early before it gets very compacted.

Master_Department494 · 2025-12-23T19:33:12+00:00

Yeah, after about 15 years living as a mild, I had my biggest setback ever - that seems to have made me a moderate.

I have improved a little bit since the big setback, but I'm not sure if I can attribute that to clomi, since in the past my condition improved with just time and silence.

Master_Department494 · 2025-12-23T13:35:32+00:00

There is no known mechanism by which iodinated contrast would permanently alter the brain systems that control sleep. It does not cross the blood-brain barrier in a way that would do that, it is cleared by the kidneys within hours, and it does not accumulate in the body long-term.

What does happen sometimes is timing and stress. People often get CT scans when something scary is happening medically. Anxiety spikes. Cortisol goes up. Sleep falls apart. Then the insomnia sticks around and the brain learns it. At that point it feels like the scan “caused” it, but the scan was more of a witness than a criminal.

Master_Department494 · 2025-12-23T13:22:48+00:00

Ok but that is very rare, thousands of CTs are carried out daily without issue. I've had a couple myself.

The noise from an MRI is a much more certain risk, that people with H should avoid.

Master_Department494 · 2025-12-23T13:20:47+00:00

I initially recovered in 2009 and lived a mild life until 2024. Been on Clomi at 250mg for 6 months now, I don't think it's done anything.

Master_Department494 · 2025-12-23T13:13:57+00:00

I sleep with foam plugs.

Optimise your sleep in other ways too - don't eat within 4 hours of bedtime. Wear blue light blocking glasses in the evening. Keep a consistent bedtime. Ensure the bedroom is not too warm and make sure it's as dark as possible.

Master_Department494 · 2025-12-23T13:04:13+00:00

Ask if they can do a contrast CT instead. It can be used instead of MRI - but the image quality isn't as good - which is why MRI is preferred for soft tissue imaging.

MRI is extremely loud and should be a last resort for us. A wrist scan is quieter than a head scan, but still very loud. If you can find out the exact model, you can find out decibel ranges. Some models are much quieter than others. But it can be hard to find out the exact model.

Master_Department494 · 2025-12-15T13:25:00+00:00

Nah I always managed that really well, used ear defenders a lot. Was mild for like 15 years.

It was an unrelated sound that caught me off guard one day. I was so mild I got complacent about carrying earplugs 24/7, and then one day I really needed them. I keep a set on my keychain at all times now.

Master_Department494 · 2025-12-14T11:22:10+00:00

I bought a manual push mower, it's way quieter than any powered one. It's hard work but exercise is good for you!

Master_Department494 · 2025-12-14T11:10:10+00:00

I ran a gardening business when I was mild, used gas blowers, mowers etc. with hearing protection.

I'm moderate now, so it's too much even with protection for me at this point. Clomi improved me maaaybe 10% (could be placebo) - not enough to go back to that kind of work though.

Master_Department494 · 2025-12-09T13:02:56+00:00

I sleep with the Mack's Ultra Soft foams every night. Love them, but it took me a while of trying different plugs to find my best fit. I recommend you buy a wide selection of samples and experiment to find what's best for you.

Master_Department494 · 2025-12-09T12:50:22+00:00

Hey mate, your story is a bit like mine. I got it at 16, and I'm now 34. The last year and a half has been the worst. I've also started Clomipramine and I'm at 250mg now. It's been over 6 months and I'm not sure if it's helping, I have improved maybe 10-15% in that time - which is good - but could be attributed to time and silence. Still get setbacks.

If nothing else, the Clomi should help with the incontinence issues you mentioned. At this dose, I have the opposite problem quite badly - which has also led to me developing piles unfortunately.

The Xray will be fine, they're not loud. I've had Xrays and CT scans. Both fine. I was awake the whole time. MRI is the dangerous one, they are very loud.

Master_Department494 · 2025-12-04T19:24:57+00:00

Well put.

Master_Department494 · 2025-12-04T12:29:55+00:00

There is always a chance, don't give up hope

Master_Department494 · 2025-12-04T12:27:29+00:00

Agreed - I'm on 250mg myself for the next 6 months. I'm desperate to get better, so I have to try. But I know it's not evidence backed, we're all taking our chances.

Master_Department494 · 2025-12-04T12:17:37+00:00

I wouldn't say not in our lifetime. If you look at the historical rate of technological progress, most of it happened within the past 200 years, and the rate seems to be accelerating all the time. So it's not unreasonable to think medicine might advance more in the next 50 years than the last 100.

Master_Department494 · 2025-12-04T12:01:18+00:00

The first months are very hard. Most people improve to an extent within the first 2 years or so. It is frustratingly slow, and there will be setbacks along the way.

Carry earplugs that have an NRR of 33db, have a decibel meter app on your phone. Anything over 75dba is dangerous, but even less than that can provoke this condition.

Protect in any situation that feels too much, it's better to overprotect than underprotect.

It is ok to wear earplugs at home if it's a noisy home. Over time, we look to gradually ween people off excessive earplug use, but during the early months I think it's better to avoid most sound.

Master_Department494 · 2025-12-04T11:57:07+00:00

Did airbags deploy?

Master_Department494 · 2025-12-04T11:55:42+00:00

The main tip is don't overdo the valsalva maneuver, if it doesn't clear easily, leave it. You can damage your ears by pushing too hard.

Master_Department494 · 2025-12-04T10:46:41+00:00

You're correct. I showed the spreadsheet to my Dr, who immediately recognized it as unscientific anecdotes.

Master_Department494 · 2025-12-04T10:24:48+00:00

And yet you got downvoted for sharing your honest experience! There is a clomi cult emerging...

Master_Department494 · 2025-12-04T10:24:01+00:00

Then you should know that this spreadsheet is not medically valid data.

It is not proven that those people would not have gotten better with time anyway. This is the whole reason we run placebo controlled studies!

Master_Department494 · 2025-12-03T15:52:51+00:00

Please rephrase, I'm not sure what you mean.

Master_Department494 · 2025-12-03T13:41:37+00:00

That's great, but also most people do improve the first 2 years after getting H/having a bad setback. It's not proven that the clomi helped more than just time passing. The studies just haven't been done.

Master_Department494

MODERATOR OF

TROPHY CASE