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.

Hi @elizabej Yes, my Neurologist started me on Midodrine 5mg tablets, two months ago. I take 1 and 1/2 tablets, three to four times during the day. (The last tablets are 4 hours before bedtime). I notice "good" improvement with my Orthostatic Hypotension, about 1/2 an hour after taking the Midodrine. Like you, I have a terrible time with my low BP. I am very new to taking this medication and I have to log my BP throughout the days. Some days are better than others, but I would rate it as "good" improvement since starting it. (It has kept me from fainting to the ground). He also has me taking Fludrocortisone 0.1mg, every morning. Have you tried other meds? I had been battling this low BP for a year until all my testings were done. It's quite challenging.

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Just a word of caution. I believe my neuropathy was caused by a steroid injection (Kenalog) in my neck area. Kenalog is not approved by the FDA for injections near the spine.

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Thank you @cwallen9 for sharing this.

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@cwallen9

Just a word of caution. I believe my neuropathy was caused by a steroid injection (Kenalog) in my neck area. Kenalog is not approved by the FDA for injections near the spine.

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Hi cwallen9, my peripheral neuropathy and more horrible things started after I got the flu vaccine on November 15, 2018. It went up my legs through my body into my face and I went to the ER November 22, 21018 where they said they couldn't find anything but nobody asked or mentioned the flu shot to me. My husband found it online 2 months later while we've been trying to figure out what happened to me. I reported the reaction to VAERS. It's a vaccine adverse reaction site through the CDC. If people don't report, they will never know.

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@teetee7

Yes, I have been battling tinnitus (loud and high pitched "locust" sounds in both ears) with occasional ear pain for over a year now. I, too, have Small Fiber Neuropathy and Autonomic Neuropathy. My hearing and ear health tests have checked out fine. I take Gabapentin, NSAIDS, midodrine (for Orthostatic Hypotension), and a couple of other meds as a result of breaking my thoracic spine in 7 places, 10 years ago. Those meds don't have tinnitus listed as a side effect. My tinnitus started, the same time I started to experience symptoms of my Autonomic Neuropathy which was just over a year ago. (My Neurologist had me undergo all of the testing at the Mayo for Autonomic Neuropathy/Dysfunction – having a concrete diagnosis in November). He wants me to see a specific ear specialist, as there may be something we can put in our ears to take away the very annoying tinnitus sounds. I haven't made that appointment yet.

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I had the same ear pain and high pitched white noise in my ears. I have SFN as a result of chemo. I take gabapentin, cymbalta, oxycodone, and blood pressure meds. I got where I couldn't stand it anymore and went to an audiologist last fall. She fitted me with hearing aids and tuned them so that the tinnitus is all but gone. It was truly a life saver for me.

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Hi @marty77 . Oh my, this is fantastic to read! I believe this treatment is what my Neurologist was referring to, at my last visit. I will definitely be scheduling an appointment with the Neuro-otologist he referred me to, after reading this. Many, many thanks!

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@teetee7

Hi @marty77 . Oh my, this is fantastic to read! I believe this treatment is what my Neurologist was referring to, at my last visit. I will definitely be scheduling an appointment with the Neuro-otologist he referred me to, after reading this. Many, many thanks!

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I hope it helps you like it did me

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@cokie63

Hi cwallen9, my peripheral neuropathy and more horrible things started after I got the flu vaccine on November 15, 2018. It went up my legs through my body into my face and I went to the ER November 22, 21018 where they said they couldn't find anything but nobody asked or mentioned the flu shot to me. My husband found it online 2 months later while we've been trying to figure out what happened to me. I reported the reaction to VAERS. It's a vaccine adverse reaction site through the CDC. If people don't report, they will never know.

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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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@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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