Seeking Guidance on Severe Tinnitus and Persistent Muscle Twitches Post-Infection

[JohanR]

I am reaching out in hopes of finding guidance or insight into a challenging health issue I've been facing for the past year.

For context, I've had moderate tinnitus (8/10) for several years, caused by multiple acoustic traumas from concerts. However, last year, I experienced what I believe was a shingles infection. My symptoms included a high fever, mild paralysis on the left side of my face, issues with my left eye, and other unusual signs. After about 10 days, I began to feel that the virus had passed. However, on the first day of relief, I woke up to a dramatic worsening of my tinnitus, which jumped to an unbearable 12/10, along with widespread muscle twitches.

It has now been a year, and although the muscle twitches sometimes subside for a few days, they inevitably return. Unfortunately, the severe tinnitus remains constant. Despite consulting with my doctor, no clear diagnosis or solution has been found. It's worth noting that I contracted COVID-19 both before and after the suspected shingles infection, but these episodes did not impact my tinnitus at all.

At this point, I am urgently seeking advice, as managing the situation has become increasingly challenging. If anyone has experienced something similar or can offer recommendations, I would be immensely grateful for your input. I am open to trying any potential treatments or medications. To clarify, while I can tolerate the muscle twitches, the severity of the tinnitus has become overwhelming and unmanageable.

Thank you for your time and support.

 

[IYIiKe]

Assuming you've seen a neurologist and had an EMG (the procedure only hurts minimally, though the soreness afterward can be worse and last a few days) for the muscle twitching, the best thing you can do is try to let it go. I was diagnosed with benign fasciculation syndrome (BFS)—which involves twitching muscles throughout the body—roughly six months after my tinnitus onset. If you think the science behind tinnitus is lacking, BFS research is even worse. Essentially, being a male in your 20s or 30s under stressful conditions predisposes you to BFS. The leading theory suggests it's related to hyperexcitability of the anterior horn cells in your spinal cord, which can occur due to various factors like viruses, chronic stress, and more.

Your twitches are likely concentrated in your calves, most noticeable when you're stressed, anticipating something, or lying in bed thinking about the twitches. They probably diminish when you tense the muscle.

It's possible that you have some sort of issue with your facial nerve after the infection, but at this stage, there isn't much that can be done.

The main takeaway is that while the twitching is bothersome, it's very unlikely to be harmful. If the twitching bothers you to the point where you need it to stop, you can discuss Botox with a neurologist, though they likely won't offer much else since BFS is benign and EMG testing rules out degenerative motor neuron diseases.

I'm sorry you're struggling with tinnitus. Unfortunately, there isn't much in your doctor's arsenal that will help. The best approach is to try to live with it as best as you can and consider seeking CBT or counseling, even if it doesn't seem appealing. Society is not yet advanced enough to fully understand or effectively treat tinnitus. You might want to visit an audiologist for a tinnitus masker or use headphones (if you're not sensitive to noise) to mask the tinnitus during the day or while working.

 

[JohanR]

Assuming you've seen a neurologist and had an EMG (the procedure only hurts minimally, though the soreness afterward can be worse and last a few days) for the muscle twitching, the best thing you can do is try to let it go. I was diagnosed with benign fasciculation syndrome (BFS)—which involves twitching muscles throughout the body—roughly six months after my tinnitus onset. If you think the science behind tinnitus is lacking, BFS research is even worse. Essentially, being a male in your 20s or 30s under stressful conditions predisposes you to BFS. The leading theory suggests it's related to hyperexcitability of the anterior horn cells in your spinal cord, which can occur due to various factors like viruses, chronic stress, and more.

Your twitches are likely concentrated in your calves, most noticeable when you're stressed, anticipating something, or lying in bed thinking about the twitches. They probably diminish when you tense the muscle.

It's possible that you have some sort of issue with your facial nerve after the infection, but at this stage, there isn't much that can be done.

The main takeaway is that while the twitching is bothersome, it's very unlikely to be harmful. If the twitching bothers you to the point where you need it to stop, you can discuss Botox with a neurologist, though they likely won't offer much else since BFS is benign and EMG testing rules out degenerative motor neuron diseases.

I'm sorry you're struggling with tinnitus. Unfortunately, there isn't much in your doctor's arsenal that will help. The best approach is to try to live with it as best as you can and consider seeking CBT or counseling, even if it doesn't seem appealing. Society is not yet advanced enough to fully understand or effectively treat tinnitus. You might want to visit an audiologist for a tinnitus masker or use headphones (if you're not sensitive to noise) to mask the tinnitus during the day or while working.

Thank you so much for your response and for sharing your experience!

I'm currently undergoing CBT for my tinnitus and overall situation, and I really hope it will help. The muscle twitches, which can be pretty annoying at times, aren't a major issue for me right now. However, the increased tinnitus has become unbearable, and I'm willing to try anything that might calm it down, even a little. I got tinnitus maskers before the virus caused the major spike, but they don't seem to help anymore. On top of that, I've become extremely sensitive to sounds, and I often have to wear earplugs in most situations.

I've been reading about gabapentin and am wondering if it might be worth trying. Have you or anyone you know had any experience using it for tinnitus or muscle twitching?

Thanks again for your support and insights. If you have any further advice or suggestions, I'd really appreciate it!

Take care!

 

[IYIiKe]

Gabapentin is sometimes used to treat muscle twitching and is also used off-label for anxiety.