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.

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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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I'm sorry to hear about your severe neuropathy problems, but I am glad to hear someone has the same issues as mine. We have been to Neurologists locally and at the Cleveland Clinic without much luck. We are scheduled to go to Johns Hopkins in April. We are hoping that they will offer some hope.

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@cwallen9

I'm sorry to hear about your severe neuropathy problems, but I am glad to hear someone has the same issues as mine. We have been to Neurologists locally and at the Cleveland Clinic without much luck. We are scheduled to go to Johns Hopkins in April. We are hoping that they will offer some hope.

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I so hope that you will find some help at Johns Hopkins. They have a very good reputation as you know. Are you taking medications to treat it? I am on Amitriptyline and Gabapentin. I am very sensitive to meds and it took me a really long time to get used to them. Although I did well on them for many years until now. Do you experience any numbness or mostly pain?

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Thanks for your good wishes. I have been on Gabapentin for about 8 months, and am just starting Amitriptyline. I was taking Cymbalta with Gabapentin, which seemed to help, but I think it was making the tinnitus worse, so I stopped. I experience mostly pain with some numbness. Mine started right after a steroid (Kenalog) injection for my back pain, but no doctors have seemed to believe that the shot started my neuropathy. They haven't come up with any other causes, though. What is yours due to?

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My symptoms actually started in 2005 after a minor ankle sprain and then the neuropathic pain went into both feet. I saw every specialist back then and they all gave me a different diagnosis depending on what they specialize in. My EMG was negative for large fiber and the neurologist said he didn’t know what it was. I went to a neurologist in Phoenix AZ. and he diagnosed neuropathy, small fiber. My symptoms waxed and waned and it was always present but actually it got more and more manageable over the years. I was able to walk and hike for the past three years until three months ago. My feet get very cold and bluish and they also get red and warm. So, I’m waiting for a referral for a new neurologist and I also have a consultation with a pain management doctor next month. I’m just hoping I can get a definitive diagnosis.

I hope that the elavil will help you. It did work really well for a long time. I take 50mg. I weaned off of it a couple times and the pain in my feet were not happy at all so had to go back on it. Gabapentin is difficult on my memory also.

I find it hard to believe that the Kenalog injection did not aggravate nerves especially since the neuropathic pain started shortly after it was given. I had a herniated lumber disk at age 27 and I understand the back issues too!

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It sounds like the cause of our neuropathies are different. Hope you get relief someday.

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@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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