How to Cope with Irregular Tinnitus Sounds?

[Petey04]

Hello,

My sister and I have both had tinnitus for years, and we have learned to live with it. Recently, though, my sister has started experiencing irregular crinkling, crackling, and pinging sounds. These sounds are unpredictable and get louder with background noise. Because they're so irregular, they wake her up at night and distract her all day. Her usual coping methods aren't helping because there's nothing she can do to mask the sound. Even very quiet sounds seem to make it worse or change the rhythm.

Has anyone here dealt with this, and how did you cope? This new version of tinnitus has been going on for three months now, and she's barely hanging on. She keeps saying, "My life is over."

Over the years, we've tried everything, but nothing has ever helped, so we don't have much hope for this new version, either. I feel like her only option is to find a way to live with it, but our brains are wired to be alerted by new sounds, and this one always feels new.

Any thoughts on how she might cope? Any advice is appreciated.

 

[Notreve7766]

Hi @Petey04,

Tinnitus can change, and when it does, it can be alarming. We know that an anxious reaction often makes it worse, but we also know that when we accept and work on managing our anxiety around tinnitus, our perception of it tends to lessen, allowing us to live well with it.

When we feel anxious about our tinnitus, it can seem to compete with background sounds. In my case, this has certainly been true. This is likely a normal response, especially since her tinnitus has recently changed.

Keep reassuring your sister that, although this change is unsettling, it will calm down as her anxiety about it decreases. Although her usual coping methods aren't working right now, there are still many approaches to try that could help.

There's no reason she can't return to how she felt before this recent change. She needs to be kind to herself, find ways to relax, and let the healing process take care of the rest.

 

[in_the_shadows]

Hello,

My sister and I have both had tinnitus for years, and we have learned to live with it. Recently, though, my sister has started experiencing irregular crinkling, crackling, and pinging sounds. These sounds are unpredictable and get louder with background noise. Because they're so irregular, they wake her up at night and distract her all day. Her usual coping methods aren't helping because there's nothing she can do to mask the sound. Even very quiet sounds seem to make it worse or change the rhythm.

Has anyone here dealt with this, and how did you cope? This new version of tinnitus has been going on for three months now, and she's barely hanging on. She keeps saying, "My life is over."

Over the years, we've tried everything, but nothing has ever helped, so we don't have much hope for this new version, either. I feel like her only option is to find a way to live with it, but our brains are wired to be alerted by new sounds, and this one always feels new.

Any thoughts on how she might cope? Any advice is appreciated.

It sounds like reactive tinnitus. Hearing beeping in response to certain noises is quite common. For example, when I experience a spike, I often hear beeping over my refrigerator, but it typically fades within a week or two. In the meantime, your sister should try to avoid any sounds that seem to trigger the beeping.

 

[Jupiterman]

Reactive tinnitus isn't very common, even among those seeking help on this forum. In fact, some people refuse to acknowledge it as a real condition.

If you mention "reactive tinnitus" to an audiologist or ENT, it's likely the first time they'll have heard the term.

 

[Pinhead]

Yes, there is little that can be done to cope with constant, second-to-second change and the unending anxiety that arises from knowing it will keep changing into the future. Some people rely on heavy medication, but for many of us reactive unstable tinnitus is basically a 'game over' screen.

 

[Cmspgran]

Reactive tinnitus sufferer here, @Petey04. I'm sorry to hear about your sister's tinnitus worsening. The same happened to me 18 months ago after decades of relatively stable tinnitus. I've tried every supplement and sound therapy known to man, but the only things that have had any effect for me have been Clonazepam, Gabapentin, and Lidocaine patches worn on the back of the neck. Both drugs are a bit of a serious step for managing tinnitus, and many GPs may be hesitant to prescribe them. Ultimately, it's your sister's choice whether she wants to pursue that route.

@Nick47 shared an excellent overview of reactive tinnitus by Dr. Djalilian. It's the most comprehensive and factual piece I've found on reactive tinnitus and seems to align with what your sister may be experiencing.

Needless to say, fellow sufferers can understand your sister's position and empathize with her feelings that it might be too much to bear. She'll need a lot of reassurance and care over the next 12 to 18 months, as it's a truly difficult condition to manage. Although I haven't improved much myself, I've reached some level of acceptance, and I believe my brain is slowly learning to cope with it a bit more. It's certainly not easy!

 

[Nick47]

Any thoughts on how she might cope? Any advice is appreciated.

@Petey04, it depends on the approach your sister chooses to take.

The condition has recently been recognized by a leading ENT surgeon and tinnitus researcher, and @Cmspgran has provided a link. This condition often presents with hyperacusis, though not always. It's frequently noise-induced, which can result from cumulative exposure or a single incident.

Modern pharmacology in treating tinnitus and hyperacusis tends to involve a combination of low-dose medications rather than a single one. Both researchers on the executive board, Dirk De Ridder and Hamid Djalilian, use this approach. These medications are listed on the website if she wants to consider the pharmaceutical route.

Personally, I take a daily combination of Mirtazapine, Gabapentin, Magnesium, and Alpha-lipoic acid. When my symptoms are very severe, I add clonazepam for a day or two.

If your sister hasn't yet seen an audiologist or ENT, that should be done as a routine step.