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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@wolfbauer

That sounds like you had Guillain-Barré. It's actually believed to be an auto-immune reaction caused by the flu virus itself, not specifically the flu vaccine (there have been several studies on it, and the frequency of Guillain-Barré was no higher in those who received the flu shot than it is in people who just got sick from the flu).

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Hi wolfbauer, it sure does sound like guillain-barre doesn't it I didn't have the flu though and it happened within the week of the flu shot. It is documented on a national vaccine reporting site that the flu shot does give GB although rare. I always thought the flu shot just gave flu feeling side effects and that's not true. I read last week so many horrible reactions to vaccines that are documented and some being permanent and some causing death. I go for a spinal tap this Friday but my MD said if it is guillain-barre, it already peaked (which it did I felt the massive pain sensations and paralysis which is slowly subsiding) and the guillain-barre proteins may not show in my spinal fluid now. All the doctors thought for sure I had MS but that is negative from the EMG and brain scan and the MRI of my spine. All I know is it sure came on FAST. Thank you for your reply every bit helps.

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@cokie63

Hi wolfbauer, it sure does sound like guillain-barre doesn't it I didn't have the flu though and it happened within the week of the flu shot. It is documented on a national vaccine reporting site that the flu shot does give GB although rare. I always thought the flu shot just gave flu feeling side effects and that's not true. I read last week so many horrible reactions to vaccines that are documented and some being permanent and some causing death. I go for a spinal tap this Friday but my MD said if it is guillain-barre, it already peaked (which it did I felt the massive pain sensations and paralysis which is slowly subsiding) and the guillain-barre proteins may not show in my spinal fluid now. All the doctors thought for sure I had MS but that is negative from the EMG and brain scan and the MRI of my spine. All I know is it sure came on FAST. Thank you for your reply every bit helps.

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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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I have tinnitus and Meniere's which causes pain, a sense of pressure and hearing loss. I have hearing aids. Fortunately I don't have the vertigo that makes Meniere's so horrible for many sufferers. My ear problems are caused by nerve damage that is related to attacks by my Immune System on the nerves in my body. I also have profound PN (walk with braces and a walker), SFN, damage to my moisture system (like Sjogren's), lung damage, bladder damage, damage to my gastrointestinal system. Tinnitus came first, then the Sjogren's like condition, then Meniere's with deafness (moderate) and then one thing after another.
I also have Primary Antibody Deficiency for which I'm treated with IVIG every four weeks, for the rest of my life.

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@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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Hi @wolfbauer, yes thank you, This is the fourth flu shot in my life so I'm aware of mild side effects and not so fun side effects. I now know people can get Gillian barre from the flu shot and from the flu and also from a long term illness or bout of diarrhea and research can't explain why that happens. After what happened to me, I will never get another vaccine as long as I live. Besides, the flu vaccine only reduces the risk or a couple strains of the flu. I'd rather get the flu then Guillian Barre. I went out last night with my husband for the first time since this happened to me (I pushed myself) and we had to leave the play at the theater because I was relapsing fast. Also, I positive I have Lyme disease so the reaction to the vaccine just complicated everything. My neurologist first suggested I had small fiber neuropathy as well. That's just a way of saying "they don't know". Maybe your small fiber neuropathy is from all the vaccines you've had or maybe you have Lyme and the co-infections. I know the Lyme vaccine gave my dog a huge lump on the back of her neck. That's where the vet techs injected it. Wrong place I was told after by another vet. My dog's back of her neck is always huge (brought her to the ER vet and they pulled out fluid but it came out non specific for anything)and she has numerous bouts of front leg lameness. She won't let me massage her neck or spine where the lump is and that was injected 2 years ago. I had a very healthy Border Collie that went in for her vaccines and 2 hours later went mad, lame and got kidney failure within in a month then seizures to full blown stroke that killed her. The problem being is that these all these vaccine side effects, debilitating reactions and deaths are not reported by vets and human medical professionals. We tell the vets and doctors and they dismiss it. I also understand there is Mercury in the flu vaccine and other toxins am I correct?

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@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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