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.

@wolfbauer

What I was trying to explain is that people mistakenly think that Guillain-Barré is only caused specifically by the vaccine itself. It's caused by an autoimmune response to the genetic material of the flu virus which is present in both the vaccine and (obviously) the contagious flu virus. The flu vaccine contains inactivated flu virus (basically chopped up flu virus genetic material that your immune system recognizes as the flu and [usually] creates antibodies against the strains of the flu virus contained in the vaccine). Yes, it sounds like you have Guillain-Barré, and if you do, it's clear the vaccine caused it. I'm trying to convey that many people refuse getting the flu shot because of GB, but everyone has the same statistical chance of getting GB from catching the flu from a doctor's office door knob as they do from the flu shot (in my opinion, if the risk is equal, why not get the flu shot and bolster your chances of being immune to the seasonal flu virus?). The flu shot doesn't always cause flu-like side effects (the majority of people who receive the vaccine experience no side effects save for perhaps a little soreness in the muscle from 0.5mL of vaccine being injected), but I can tell you from experience, when it does cause flu-like symptoms, it can knock you on your butt. It's a matter of semantics, but it's not technically the flu… it's impossible to contract the flu from the flu vaccine (the constituent parts of the inactivated virus are incapable of causing infection or replicating; they've been destroyed). I'm not trying to be a pain, I'm just passionate about the topic and trying to educate. I went to college to be a doctor of pharmacy, and I'm licensed by the American Pharmacists Association to vaccinate patients with all vaccines (depending on the state; in RI where I went to school, we were able to give out all vaccines. I live in, and grew up in, NY, and we only used to be able to administer the flu and pneumococcal vaccines, however they have allowed pharmacists to administer many more vaccines in recent years). I have been administering vaccines since I was 21 (I can tell you, women seem to have no problem with needles, and men either whimper, or they try to be tough, flex their muscle, and all that does is cause the needle of the syringe to tear through the muscle instead of sliding through the fibers more easily in a relaxed muscle). Anyway, after my long rant, I'm glad to hear you don't have MS, and if you do have GB, it sounds like you're on the mend! Before I was diagnosed with all my health conditions such as small fiber neuropathy and autonomic dysfunction, one of my specialists was convinced I had MS, and I went through the same tests… I can relate to your relief of not having it. GB sucks, my great uncle had it really bad; I wish you the best of luck at your appointment and through your recovery and hope you feel better soon!

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Dear @wolfbauer, Thank you for your explanation about vaccines. I wonder if I have an accurate understanding how all vaccinations and medications are approved by the FDA?

I think I understand that clinical trials are made on drugs and vaccines, and that approval requires both that the drug or vaccine provides measurable benefits over placebos in the vast majority of those receiving the drug or vaccine, AND that side effects occur only in a very small percentage of those in the clinical trial. Only when serious side effects occur in a statistically significant number of people would a drug or vaccine be denied approval or taken off the market.

In other words, drugs and vaccines that are approved by the FDA are almost never 100% effective, nor 100% percent safe for every one. Is this accurate Wolfbauer?

I cannot take opioid drugs because I very quickly developed serious side effects. Cymbalta gave me both Myoclonus and Syncope in year SIX. Until then it was amazingly successful for treating my pain.

These drugs were approved by the FDA because they are beneficial to the great majority of people. My experiences, while frightening and possibly dangerous, do not fall into the category of statistically significant.

Of course, when we or a loved one are among those who have a serious side effect from a drug or vaccine, the impact can be tragic.

The refusal of a vaccine based on a tiny percentage of negative side effects may result in more deaths from infection with virus than from the vaccine, which is the case, for example with measles.

It is human nature to base our decisions on first hand accounts, rather than statistical evidence. We ask others how a drug or vaccine 'worked for them' when one person's experience in no way guarantees that we will have a similar experience. How any drug or vaccine affected your Aunt Mary is simply no indication of how it will affect me.

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@teetee7

Thank you for your reply. Yes, I believe you are correct about NSAIDS having tinnitus as a side effect. (I take Vimovo and Tylenol, as needed). When I went in for my Autonomic tests at the Mayo, I refrained from taking them 72 hours beforehand. It was really strange about having the raging tinnitus and Autonomic Neuropathy symptoms hitting me at the exact same time. The doctor my Neurologist wants me to see is a Neurotologist. I haven't set the appointment up yet, but I will, soon. I wish you the best of luck next week. Are you having the tilt table, QSART testings? Those are the tests I had done at the Mayo which confirmed my Autonomic Neuropathy/Dysfunction. I also had blood and urine tests done, which were sent to the Rochester Mayo Clinic, for analysis. I don't have diabetes or an autoimmune disease – I am in the Idiopathic category of what the cause is.

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Hi – I am in the process of being referred to a Neurologist in San Diego. I have had neuropathic pain in both my feet and I’m wondering if your neuropathy symptoms are feet related. I have high pitched ringing and low sounding tinnitus in both ears. These symptoms have been going on for many years only my tinnitus is worse and I’m pretty disabled with my feet at this time due to the pain. I had an EMG 14 years ago which was negative for large fiber neuropathy and I was never offered any other tests. However, I have always suspected SFN although I still don’t have any numbness. I am wondering which tests are preformed to determine a proper diagnosis. My symptoms have waxed and waned over the years. I have had some years in between with mild and manageable pain and was pretty active until this current exacerbation that started three months ago. Thank you.

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@lauraj155

Hi – I am in the process of being referred to a Neurologist in San Diego. I have had neuropathic pain in both my feet and I’m wondering if your neuropathy symptoms are feet related. I have high pitched ringing and low sounding tinnitus in both ears. These symptoms have been going on for many years only my tinnitus is worse and I’m pretty disabled with my feet at this time due to the pain. I had an EMG 14 years ago which was negative for large fiber neuropathy and I was never offered any other tests. However, I have always suspected SFN although I still don’t have any numbness. I am wondering which tests are preformed to determine a proper diagnosis. My symptoms have waxed and waned over the years. I have had some years in between with mild and manageable pain and was pretty active until this current exacerbation that started three months ago. Thank you.

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@lauraj155 Hi Laura, I'm sorry to hear about your problems! I, too, have neurological problems, but different from yours. Were you recommended to see a specific neurologist on San Diego? Could you please share his name and phone number? I live in S.D. and would so appreciate his or her contact info. I wish you well, Rose

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@geegie

@lauraj155 Hi Laura, I'm sorry to hear about your problems! I, too, have neurological problems, but different from yours. Were you recommended to see a specific neurologist on San Diego? Could you please share his name and phone number? I live in S.D. and would so appreciate his or her contact info. I wish you well, Rose

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Hi Rose, I’m sorry that you are dealing with neurological issues. I am waiting to see if I can be referred to Dr. Amir Bahreman who is on my health plan. I may be switching to Scripps in August and I would like to see Dr. Geoffrey Sheean as I have heard that he is a research physician along with neurology. I believe Dr. Sheean is at Scripps and UCSD. I wish you luck!

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Hi — if you really do have neuropathy (and I am not doubting you), it always starts in the toes, feet, ankles , and 99 % of the time it is bilateral, meaning it is in both feet at the same time — it is called peripheral neuropathy because it begins at the nerves which are the furtherest from your spine (on your periphery), i.e. feet and sometimes it progresses to fingers and hands
tinnitus is NOT a part of neuropathy; that is another issue —
go to The Foundation for Peripheral Neuropathy website — they have lots of information about symptoms, etc about neuropathy

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I have tinnitus with my neuropathy, and have read that it can be part of autonomic neuropathy (which I also have). I think there are many different causes of neuropathy and, thus, many different symptoms. Just giving my two cents worth.

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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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