Ear Tinnitus and Pain with Neuropathy

My wife suffers greatly from idiopathic small fiber neuropathy as well as tinnitus. She takes gabapentin and some sleep medicine(Ambien), but most medications, even at micro doses causes horrible tinnitus(ringing, almost siren levels, in her ears). She is now extremely hesitant to take anything.
On top of this, she has a jaw tremor(her neurologist considers this hyper-excitability due to the ISFN), which is causing horrible jaw pain, which she can not take any medication for, due to the tinnitus.
She feels like she is the only one going through this. Any one else have anything remotely like this? And any suggestions?
Thank you. I am glad you are all here to run this by.

My sympathy to your wife for her pain and tinnitus. I have suffered from debilitating noise induced tinnitus for over 30 years so I know what she is going through, in part. The only medication that has helped me somewhat is amitriptyline with lyrica. In terms of NSAIs aspirin is the worst, Tylenol is better. It is a problem not being able to use painkillers at all. Worse it is very awful being afraid to try any new medications. Especially when they are for necessary ailments. For example, I have asthma and must use a pump to clear the airways. Must also take medications for high blood pressure. Most tinnitus sufferers feel that way. Your wife is not alone in this. Her jaw condition makes things more problematic for her.
I have some masking sounds that I use every night called Petroff technologies. I use ear buds and turn on one of the sounds e.g. water or nature and I play them as softly as possible to be effective maskers all night. Without them it would be difficult to get a good nights sleep. I also tend to avoid activities where I am required to bend over as this worsens my tinnitus. Exercise is necessary and I find biking or walking are best. I have difficulty going to noisy environments because I also have hyperaccusis an over sensitivity to sounds. I wear hearing protection to prevent the pain of loud sounds such as at a restaurant or party, forget about concerts! I hope that you wife can find some solutions for her problems but one thing she can be sure of is that she is not alone.

Willows

Hello @tjadam. I would like to extend my welcome to Mayo Clinic Connect along with @artscaping, who I see has replied to you and who can certainly understand what it is your wife has been going through.

You will notice that I have moved your post into an existing discussion on tinnitus and neuropathy to allow you to both review the previous comments as well as to connect with members such as @artscaping @avmcbellar @ken82 and @jenniferhunter who were all most recently active in this discussion and may be able to provide support for you and your wife as well.

What are you most interested in learning from other members so they may provide you with relevant information to help?

Good afternoon @tjadam, welcome to Connect. And greetings to your wife. She is lucky to have you watching out for her. That is something I also have.....a wonderful life partner who patiently flows up and down with my life filled with ISFN. It seems like everything we do depends on what kind of day I am having with my pain and that noisy and unwelcome tinnitus.

How is her your wife's jaw tremor adding such horrible pain to tinnitus? Is there pain in her peripheral elements....arms, legs, feet, hands, and fingers? If she is taking gabapentin is it all at one time of day or spread out morning, noon, and night? What is the tinnitus about and what medications have you tried? I found that I can keep the tinnitus in a memory book and not actively in my head. Mindfulness helps me keep the tinnitus at bay.

I have exactly the same medical issues as your wife, ISFN, tinnitus, and neuropathy pain, numbness, and tingling in legs, arms, and even my skull. I have tapered down to 600 mg of bedtime gabapentin after replacing another 600 mg with medical cannabis. Ambien was tried pre-surgery one time and was way too frightening for me. I now use a 2:1 CBD/THC tincture which is just perfect to permit sleep with no side effects.

My PCP and I do an annual evaluation of the efficacy of all treatments and medications. This year we will do that next week. We use a shared decision-making strategy to modify what I call "The Plan". New to the Plan will be possible solutions for what I call neuropathic itch. If your wife does not have it......then celebrate.

My life is enriched by and responsive to daily Yoga, mindfulness, and meditation. Mindfulness, in and of itself, is my first stop when I feel a bit out of control with pain or raucous tinnitus.

Remember please, that as of today, there is no cure for neuropathy. There are reports of research going on in three companies right now with the hope of improving the speed with which nerves can be regenerated. We can share hope.

May you and your wife have happiness and the causes of happiness.
Chris

My sympathy to your wife for her pain and tinnitus. I have suffered from debilitating noise induced tinnitus for over 30 years so I know what she is going through, in part. The only medication that has helped me somewhat is amitriptyline with lyrica. In terms of NSAIs aspirin is the worst, Tylenol is better. It is a problem not being able to use painkillers at all. Worse it is very awful being afraid to try any new medications. Especially when they are for necessary ailments. For example, I have asthma and must use a pump to clear the airways. Must also take medications for high blood pressure. Most tinnitus sufferers feel that way. Your wife is not alone in this. Her jaw condition makes things more problematic for her.
I have some masking sounds that I use every night called Petroff technologies. I use ear buds and turn on one of the sounds e.g. water or nature and I play them as softly as possible to be effective maskers all night. Without them it would be difficult to get a good nights sleep. I also tend to avoid activities where I am required to bend over as this worsens my tinnitus. Exercise is necessary and I find biking or walking are best. I have difficulty going to noisy environments because I also have hyperaccusis an over sensitivity to sounds. I wear hearing protection to prevent the pain of loud sounds such as at a restaurant or party, forget about concerts! I hope that you wife can find some solutions for her problems but one thing she can be sure of is that she is not alone.

Willows

My wife suffers greatly from idiopathic small fiber neuropathy as well as tinnitus. She takes gabapentin and some sleep medicine(Ambien), but most medications, even at micro doses causes horrible tinnitus(ringing, almost siren levels, in her ears). She is now extremely hesitant to take anything.
On top of this, she has a jaw tremor(her neurologist considers this hyper-excitability due to the ISFN), which is causing horrible jaw pain, which she can not take any medication for, due to the tinnitus.
She feels like she is the only one going through this. Any one else have anything remotely like this? And any suggestions?
Thank you. I am glad you are all here to run this by.