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cwallen9 (@cwallen9)

Ear Tinnitus and Pain with Neuropathy

Neuropathy | Last Active: Jul 3, 2021 | Replies (78)

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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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Replies to "I also have tinnitus with small fiber and autonomic neuropathies with the noise in my left..."

@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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