Game Over? Worsening Reactive Tinnitus and Pain Hyperacusis with Severe Headaches

[Elipse]

I've been dealing with worsening reactive tinnitus and pain hyperacusis with severe headaches for a while now, and it just keeps getting worse. No matter what I do, my tinnitus spikes from almost any sound changes constantly and feels like it's getting louder and more irritated every day. My symptoms have become unbearable, and I feel like I'm stuck in survival mode, just trying to avoid making things worse—but nothing seems to help.

I held off on medication for as long as I could because I was terrified it might make things worse, but I've reached my limit. I know this isn't the perfect solution, and I completely understand the concerns about medication—I've struggled with those same fears myself. But right now, I feel like I have no other choice. (Please be kind; I'm just trying to survive.)

Even so, I'm scared. I don't know if this will help or if I've made a mistake, and worst of all, I'm terrified it's already "too late" for me. I've started having serious thoughts of suicide because I can't see a way forward. Has anyone been hospitalized or been to the ER because of tinnitus? I don't know how much more I can take, and I don't know what to do.

If anyone has been through something similar, I'd really appreciate any advice or hope. I feel completely lost.

 

[vilebubbles]

I'm going through something similar, and I'm so sorry. The worsening tinnitus, along with the face and head pain, is wearing me down.

 

[Elipse]

I'm going through something similar, and I'm so sorry. The worsening tinnitus, along with the face and head pain, is wearing me down.

Thank you for your message ♡

 

[SafeMusicFan]

I can't say I have had this serious symptom myself, far from it, as I don't have hyperacusis, but I have been reading a lot about the condition lately, experiencing a burdensome tinnitus spike for the last 2 months. Today, it's been screaming at me the whole day, covering the noise of office meetings, conversations, etc.

I can only try to offer a few humble advice:

• Currently, since it's pretty bad and worsening, try not to think of the long-term. Only take it as a day-to-day challenge, one day at a time. Looking at the big picture in that condition may lead to dark places mentally, and those are places it's better to avoid
• Please don't make a final decision based on what you're experiencing at this moment. From your profile, it seems you've had an onset for about 4-5 months. This is definitely a very long time to be suffering intensely, and I can only send you a lot of support and courage. You're doing your best to get through it. On the tinnitus/hyperacusis scale, 4-5 months is, unfortunately, a short time to have a good guess on how it'll evolve in the future. Some cases seem to improve at the 6 month mark, 1-year mark, 18 month mark, or even later.
• I can point you to a couple of positive stories I read from people who had it (very) bad. I think reading those stories again and again on bad days could help, and possibly, you'd get insightful information from here
  • From Darkness to Light, How I Recovered from Tinnitus & Hyperacusis
  • My Entire Tinnitus and Hyperacusis Story — From Hell to Paradise
  • My Acoustic Trauma (Jackhammer) Induced Tinnitus Has Got Much Better

Again, if you're in a state where everything worsens the condition, a long silent retreat and, if possible, moving to a peaceful environment (countryside, nature), far from the city stress may possibly help, but that's just my gut feeling speaking here, no scientific evidence behind it. But I would definitely lean more towards a "better safe than sorry" approach, in general, for a long time. I would try to think of it this way: even if life makes it so that it gets super tough and survival mode for, say, 3 years, there is always the possibility, somehow, some switch will happen at one point, and that the following 10 years will be much better. Brain plasticity can do wonders, both in terms of symptoms and coping, but only with time will you know it. Until then, it's an uncertain hustle, but it's not a lost cause.

It's the first time I'm posting a "try-to-help" message on this forum, but as I read your post, I thought I didn't want to ignore it. I hope it will help you a tiny little bit if anything, and again, sending you a lot of support from here.

 

[in_the_shadows]

Stay strong and take things one day at a time. Over time, things will stabilize, and you may notice improvements from month to month.

The first time I experienced hyperacusis with burning sensations and reactive, multi-tonal tinnitus, I was desperate. It lasted for two to three months before it subsided and transitioned into loud tinnitus without reactivity or sensitivity.

Recently, I had a setback related to an autoimmune issue, so unfortunately, I'm back at square one.

 

[vilebubbles]

Stay strong and take things one day at a time. Over time, things will stabilize, and you may notice improvements from month to month.

The first time I experienced hyperacusis with burning sensations and reactive, multi-tonal tinnitus, I was desperate. It lasted for two to three months before it subsided and transitioned into loud tinnitus without reactivity or sensitivity.

Recently, I had a setback related to an autoimmune issue, so unfortunately, I'm back at square one.

This gives me a little bit of hope. Did you isolate from noise during that time?

 

[in_the_shadows]

This gives me a little bit of hope. Did you isolate from noise during that time?

Yes, but I made the mistake of overprotecting at home because I wanted to stabilize my variable tinnitus. It did stabilize, but at the cost of making my auditory system more sensitive, which made my tinnitus even worse when I tried to remove the protection.

 

[SafeMusicFan]

In many cases, it seems there is a difficult balance to find between too loud and too quiet.

Overall, I think a calm and peaceful environment is best, especially during an acute phase. However, not all quiet environments are the same. For example, a walk in nature is usually beneficial for me, while listening to speakers—whether from a phone, computer, or other device—at low volume can easily irritate my tinnitus, even if the sound is meant to be soothing.

On the other hand, in my experience, extended periods of total silence seem to make my auditory system noticeably more sensitive. Once that happens, the effect does not fade easily or quickly. I previously said I do not have hyperacusis, but to be fair, I am currently sensitive to certain types of sounds. It is not to the point of being very painful, but it is definitely uncomfortable. I am convinced that my recent isolation in silence has contributed to this.

This leads me to believe that quiet places with gentle natural background sounds are probably a good compromise—at least in some cases. It is safest to avoid harsh sounds whenever possible.

 

[vilebubbles]

Yes, but I made the mistake of overprotecting at home because I wanted to stabilize my variable tinnitus. It did stabilize, but at the cost of making my auditory system more sensitive, which made my tinnitus even worse when I tried to remove the protection.

That is what I am doing right now because I tried to live normally and only protect myself from loud noise, but I got worse. I do not know what to do. My tinnitus just keeps getting worse.

 

[Nes]

Yes, but I made the mistake of overprotecting at home because I wanted to stabilize my variable tinnitus. It did stabilize, but at the cost of making my auditory system more sensitive, which made my tinnitus even worse when I tried to remove the protection.

Have you been able to completely stop using protection at home? I am dealing with the exact same issue. My tinnitus has also improved a lot thanks to protection, but I would like to be free from it in my own house.