Ear Tinnitus and Pain with Neuropathy

The tinnitus in my left ear began at the same time SFPN began in my left foot with a retinal stroke and migraine headache in my left eye. Doctors are unable to find a cause and effect to begin any form of treatment. Any suggestions for for relief from the SFPN and tinnitus are welcomed.

Good evening @dwlowrance, Welcome to Connect. I see it has been a while since you joined. I can see that you present a bit of a challenge..........with nerve conditions in both your ear and foot. I am wondering how long you have been dealing with the SFPN and tinnitus at the same time. I have also read your introduction and get the sense that being able to speak without interference from your ears is critical. You have asked for information about both. Do you feel that they relate especially when they reside on the same side of your body? Does the intensity of sensation in one (pain) coincide with a similar or different sensation in the other (noise/sound)?

When was your diagnosis of SFPN and how was it established? By a skin punch biopsy? Did your clinician begin a treatment program for you? The medication options and dosage choices are quite numerous. Perhaps you could share how you control your SFPN pain and the discomfort of tingles and pin needles.

If you hang with me now...I want to share with you what is happening as I type this. I am lying under a blanket because my feet are experiencing pain and the dreaded icicles of SFPN. As if that wasn't enough, my tinnitus is having a field day rising and falling in intensity as I try to concentrate on the process of thinking and composing this post to you. When they talk about multi-tasking...I wonder if this is what they mean in the chapter on aging.

Until I get some information about the details of your current sensations and the treatments/medications you currently use, it would be premature of me to jump in with my routine. Currently, I control my SFPN pain with medical cannabis and MFR or Myofascial Release therapy. The tinnitus is mostly at background level except when I need to think or create and then it "roars". I have noticed that when there is a sense of urgency, the tinnitus will back off or recede. My "sound" is of the chirping variety......like crickets. It has not changed in 3-4 years. One unusual sensation is when I find I can move the sound from one ear to the other by opening and closing my jaw.

This is a journey we're on isn't it? I am 78 and have endured orthopedic challenges all my life......not that I couldn't have avoided quite a few by being less aggressive and less daring.

Looking forward to continuing to see your name in lights at the top of my daily member list. What causes you the most concern and for what reason?

May you be healthy and whole.
Chris

Yes I have the exact same symptoms . I just can't believe they don't have any better treatment. I have been told that lorazepam or other benzodiazepines can actually help. The neuropathy is bad enough just by itself. They give me Lyrica which has a small effect. I do notice if I get nervous and upset it all gets worst. The medical science has ignored this illness and I think those who suffer from neuropathy are not taking serious. Not until some science can prove it is real it hurts then and only then will a real treatment come or when the drug companies figure how many people suffer from it and how much they can make by treating this awful disease.

Hi @dwlowrance I had a ruptured AVM(ArteroVenousMalformation) which left me with neuropathy after the 3rd and last surgical repair. I did experience the tinnitus soon after the AVM and before developing neuropathy. I tried a supplement of Lions Mane mushrooms after developing neuropathy. Within 3-4 months the tinnitus completely went away. I don’t know if it coincidently went away on its own or if the supplement contributed. I was so glad to have gotten rid of the annoying ringing that came and went periodically. I am still combatting the numbing and burning pain from the neuropathy. Best wishes to you in finding your remedy. I do my own research before seeing any physician and learn by trial and error. I have even gone as far as contacting a representative of a popular supplement company for information regarding the Lions Mane Mushroom. That person recommended getting my supply from a different manufacturer because his company did not produce it. Good luck. Toni

@avmcbellar With all supplements I try to find double blind tests in which the supplement is used in a lab or clinical trial situation.. With the Lions Mane Mushroom it has been used in Asia for sometime. There seem to be tests using mice or rats to test the effectiveness of the Mushroom.. The NIH did a study on nerve regeneration in rats where rear legs were involved.. The transfer of these results to humans is really difficult to find.. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3176599/

Hi @ken82 At the time I had encouraging news from the sales representative of a reputable manufacturer. His company did not produce a Lions Mane Mushroom supplement. Needless to say I never did buy any products from him that day but he did recommend getting the Lions Mane Mushroom. I didn’t take his word for it so I began doing my own research online. I found mixed reviews. Since there were no health risks involved, according to my research, I felt confident enough to give it a go. I had nothing to lose. I noticed no significant changes right away. After several months I realized my tinnitus was gone. I continued taking the supplement a few months longer in hopes it would also help with the neuropathy. If it did it was very slight. Hard to tell because some days it is better than others. The product I ended up purchasing was from Amazon. I had read the reviews beforehand. At the time some claimed that it helped with their tinnitus. I didn’t pay much attention to that because I was mostly concerned with the neuropathy and muscle weakness. Wish you well. Toni.

Yes I have both

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.

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

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?