Ear Tinnitus and Pain with Neuropathy

Posted by cwallen9 @cwallen9, Jan 29, 2019

Does anyone have severe tinnitus and ear pain with their neuropathy? I have small fiber and autonomic neuropathy and I have been getting severe tinnitus (roaring and high pitch noise) and a feeling of pressure and pain for the last month. I am wondering if the neuropathy and/or medications are causing it. I am on gabopentin, cymbalta, and NSAIDS.

@cwallen9 I do think lipoflavins and other bioflavonoids help tinnitus and promote vascular health and stabilize nerves. I take several supplements including: soy isoflavinoids, rutin, quercetin (at different meals; those two are related), resveratrol, grape seed extract, etc. There are published reports that resveratrol and quercetin together synergistically can promote fat burning – so you may be altering metabolism. These supplements may really impact healing. Many people use rutin to heal hemorrhoids. Several users of soy isoflavinoids reviewed that it got rid of menopausal hot flashes. These are not placebo effects, based on what people say. There are several different classes of bioflavonoids so you may need to combine several types (or not- who knows?). You can purchase at vitamin shops or pharmacies or on amazon (usually for less). There is a brand for ear ringing (hear). However, when used as the only lipoflavin I found it made me more sensitive to pain (but that may not be an issue for you). Always take with a meal. You may need a combination of bioflavonoids to get results. Monitor your blood pressure, too, but some bioflavonoids actually lower blood pressure averages.

I would suggest try the hear lipoflavin first, then add some resveratrol, quercetin / rutin and grape seed extract in some combination without overdoing it. BTW, several B vitamins are “bioflavonoids” as a class of chemicals. A pharmacist told me about these when I asked about how to alleviate ear ringing from an NSAID.

I have lower lumbar DDD and increased pain sensitization as a result and I suspect the supplements -especially the rutin- have knocked down the pain threshold significantly for me. I also use an inversion table, much stretching and TRX suspension system for core exercises and to strengthen my back to avoid pain and the sciatica from the DDD is less from all this. As you can tell I do many things so I can not say for sure what effect exercise vs. bioflavonoids supplements have for sure on my nerve pain and sciatica / radiculopathy. I do think the bioflavonoid supplements helped decrease my pain and they may help your tinnitus, too, if you find the right combinations. At reasonable doses they will likely do no harm so it’s worth a try. Always take with a meal. Good luck.

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@stobie2019

I also have tinnitus with small fiber and autonomic neuropathies with the noise in my left ear being almost deafening at times. When it first started some ten years ago, I went to my MD with a severe earache in my left ear. When he looked in there he said it was perfectly normal. I said no that can't be it hurts so bad it's making me nauseous. That's when he informed me that it was due to the neuropathy and it wasn't a real medical situation. Every now and then I still get an earache, I run high fevers, but mostly I pass out from my B/P dropping suddenly, only now I get a warning I loose my eyesight first so it gives me a second or two to lay down. Only thing is repeated episodes of this have caused the capillary layer of my optic nerve to be lost and it's damaging it.
I wish you luck, because finding a good neurologist on the almost east coast has been very difficult at Best for me. They lack compassion and understanding because they can't see your disease!

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@stobie2019 A few things about your symptoms caught my attention. I just found some very technical literature about the relationship of tinnitus with whiplash neck injuries and TMJ and even thoracic outlet syndrome. TOS causes compression of nerves and blood vessels, and severe TOS can even cause a patient to pass out just by turning their head. This literature was of interest to me because I have all of these symptoms with ringing in my left ear which is the side where my jaw is too tight, and my TOS is worse on that side too. I sometimes get pain in my ear. TOS is a positional problem and bad posture contributes to it. It's also hard to get properly diagnosed and treated since doctors think it's rare, but it isn't… it's just poorly understood. I developed spinal cord compression in my neck 20 years after the whiplash, and I became a spine surgery patient. I came to Mayo because of the complexity of a spine injury and also having TOS since they can diagnose and treat TOS which for me is with physical therapy. I have had vertigo from the rotation of C1 & C2 which happened before I had my C5/C6 fusion and that hasn't happened since, but I do get some rotation of C1 & C2 that can cause some nausea until they are put back in place by my physical therapist. This article also talks about issues with vision because of misalignment of bones and muscle weakness that cause the problems. This is very detailed and hard to understand, but if you look at the discussion summaries you can understand the issues. If this sounds like it might relate to your symptoms, you might approach a specialist with this literature. I did that when I came to Mayo because I found medical literature about cervical spinal stenosis with cases that were similar to mine, and the other 5 specialists I had seen simply got it wrong. I sent the literature in with my imaging and asked for an appointment, and Mayo helped me, and I had surgery there to remove the bad disc and bone spurs that were compressing my spinal cord.

I don't like hearing a doctor say that your symptoms are not a real medical situation. I think this doctor is just missing what the real problem is. If you are passing out suddenly and loosing capillaries that supply your optic nerve, that is something that should be evaluated and it most definitely is a medical issue. You have to advocate for yourself, and if you can't find a specialist advanced enough where you live, you might want to consider traveling. I tried to stay close to home too, but none of the surgeons could connect my symptoms of pain and weakness with my imaging, and it was definitely worth it for me to come to Mayo. I found the doctors there do listen to the patient and they did consider the literature I brought to them and every one of them treated me with compassion and respect. It saves time and the doctor can focus on the specific issues that you have in common with the literature. The other bonus is having a multidisciplinary approach. I saw a specialist about TOS who discussed my case with my neurosurgeon which is important because both of these problems cause an overlap in pain symptoms, and they have to determine the cause of the pain in order to try to fix it. That all happened so efficiently at Mayo, and I had an answer in a couple days. I had wasted 2 years just getting worse and was turned down by all the surgeons I saw previously. I think you need an answer as to why your optic nerve is being damaged, and keep seeking an answer. You need someone with a subspecialty and interest in that area. That is so important, and it may be possible to improve this if you find a team of professionals who understand the problem. It might be worth it to see a spine specialist if you have neck symptoms. There are some spine problems that are positional and do affect blood circulation to the brain. Have you been given a diagnosis as to why you have episodes of passing out? If it isn't something emotional causing it, there could be a physical reason.

Here is the literature I found. "The association between tinnitus, the neck and TMJ"
https://trainingandrehabilitation.com/association-tinnitus-neck-tmj/?fbclid=IwAR3OwbC6yq-x0kX-77iGijQxCcJDnp76CaAjQ8kQLE0eKaXhGJeeZwSpfHo
https://www.mayoclinic.org/diseases-conditions/dizziness/symptoms-causes/syc-20371787
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://www.mayoclinic.org/diseases-conditions/tmj/symptoms-causes/syc-20350941

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Hi! I was diagnosed with small fiber neuropathy last August after almost 15 years of wrong diagnoses. Recently I have been experiencing ringing in my ears. It is loud and distracting, and it comes and goes. I am not on any meds other than for pain management, so I can't blame the meds.
I have taken the meds you listed before (years ago) but none of them caused tinnitus.
I hope this helps you.

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@everyonesxwife

Hi! I was diagnosed with small fiber neuropathy last August after almost 15 years of wrong diagnoses. Recently I have been experiencing ringing in my ears. It is loud and distracting, and it comes and goes. I am not on any meds other than for pain management, so I can't blame the meds.
I have taken the meds you listed before (years ago) but none of them caused tinnitus.
I hope this helps you.

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Hello @everyonesxwife, Welcome to Mayo Clinic Connect. Thanks for sharing your experience. It's helpful to learn from the experience of others. From Mayo Clinic's information on Tinnitus the ringing can come and go…"The phantom noise may vary in pitch from a low roar to a high squeal, and you may hear it in one or both ears. In some cases, the sound can be so loud it can interfere with your ability to concentrate or hear external sound. Tinnitus may be present all the time, or it may come and go. There are two kinds of tinnitus."
Tinnitus – Symptoms and causes – Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/tinnitus/symptoms-causes/syc-20350156

Have you discussed the ringing in your ears with your doctor?

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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.

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@dwlowrance

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.

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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

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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.

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@dwlowrance

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.

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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

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@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/

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@ken82

@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/

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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.

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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.

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