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.

Interested in more discussions like this? Go to the Neuropathy group.

@tjadam

My wife suffers greatly from idiopathic small fiber neuropathy as well as tinnitus. She takes gabapentin and some sleep medicine(Ambien), but most medications, even at micro doses causes horrible tinnitus(ringing, almost siren levels, in her ears). She is now extremely hesitant to take anything.
On top of this, she has a jaw tremor(her neurologist considers this hyper-excitability due to the ISFN), which is causing horrible jaw pain, which she can not take any medication for, due to the tinnitus.
She feels like she is the only one going through this. Any one else have anything remotely like this? And any suggestions?
Thank you. I am glad you are all here to run this by.

Jump to this post

Good afternoon @tjadam, welcome to Connect. And greetings to your wife. She is lucky to have you watching out for her. That is something I also have…..a wonderful life partner who patiently flows up and down with my life filled with ISFN. It seems like everything we do depends on what kind of day I am having with my pain and that noisy and unwelcome tinnitus.

How is her your wife's jaw tremor adding such horrible pain to tinnitus? Is there pain in her peripheral elements….arms, legs, feet, hands, and fingers? If she is taking gabapentin is it all at one time of day or spread out morning, noon, and night? What is the tinnitus about and what medications have you tried? I found that I can keep the tinnitus in a memory book and not actively in my head. Mindfulness helps me keep the tinnitus at bay.

I have exactly the same medical issues as your wife, ISFN, tinnitus, and neuropathy pain, numbness, and tingling in legs, arms, and even my skull. I have tapered down to 600 mg of bedtime gabapentin after replacing another 600 mg with medical cannabis. Ambien was tried pre-surgery one time and was way too frightening for me. I now use a 2:1 CBD/THC tincture which is just perfect to permit sleep with no side effects.

My PCP and I do an annual evaluation of the efficacy of all treatments and medications. This year we will do that next week. We use a shared decision-making strategy to modify what I call "The Plan". New to the Plan will be possible solutions for what I call neuropathic itch. If your wife does not have it……then celebrate.

My life is enriched by and responsive to daily Yoga, mindfulness, and meditation. Mindfulness, in and of itself, is my first stop when I feel a bit out of control with pain or raucous tinnitus.

Remember please, that as of today, there is no cure for neuropathy. There are reports of research going on in three companies right now with the hope of improving the speed with which nerves can be regenerated. We can share hope.

May you and your wife have happiness and the causes of happiness.
Chris

REPLY
@tjadam

My wife suffers greatly from idiopathic small fiber neuropathy as well as tinnitus. She takes gabapentin and some sleep medicine(Ambien), but most medications, even at micro doses causes horrible tinnitus(ringing, almost siren levels, in her ears). She is now extremely hesitant to take anything.
On top of this, she has a jaw tremor(her neurologist considers this hyper-excitability due to the ISFN), which is causing horrible jaw pain, which she can not take any medication for, due to the tinnitus.
She feels like she is the only one going through this. Any one else have anything remotely like this? And any suggestions?
Thank you. I am glad you are all here to run this by.

Jump to this post

Hello @tjadam. I would like to extend my welcome to Mayo Clinic Connect along with @artscaping, who I see has replied to you and who can certainly understand what it is your wife has been going through.

You will notice that I have moved your post into an existing discussion on tinnitus and neuropathy to allow you to both review the previous comments as well as to connect with members such as @artscaping @avmcbellar @ken82 and @jenniferhunter who were all most recently active in this discussion and may be able to provide support for you and your wife as well.

What are you most interested in learning from other members so they may provide you with relevant information to help?

REPLY
@tjadam

My wife suffers greatly from idiopathic small fiber neuropathy as well as tinnitus. She takes gabapentin and some sleep medicine(Ambien), but most medications, even at micro doses causes horrible tinnitus(ringing, almost siren levels, in her ears). She is now extremely hesitant to take anything.
On top of this, she has a jaw tremor(her neurologist considers this hyper-excitability due to the ISFN), which is causing horrible jaw pain, which she can not take any medication for, due to the tinnitus.
She feels like she is the only one going through this. Any one else have anything remotely like this? And any suggestions?
Thank you. I am glad you are all here to run this by.

Jump to this post

My sympathy to your wife for her pain and tinnitus. I have suffered from debilitating noise induced tinnitus for over 30 years so I know what she is going through, in part. The only medication that has helped me somewhat is amitriptyline with lyrica. In terms of NSAIs aspirin is the worst, Tylenol is better. It is a problem not being able to use painkillers at all. Worse it is very awful being afraid to try any new medications. Especially when they are for necessary ailments. For example, I have asthma and must use a pump to clear the airways. Must also take medications for high blood pressure. Most tinnitus sufferers feel that way. Your wife is not alone in this. Her jaw condition makes things more problematic for her.
I have some masking sounds that I use every night called Petroff technologies. I use ear buds and turn on one of the sounds e.g. water or nature and I play them as softly as possible to be effective maskers all night. Without them it would be difficult to get a good nights sleep. I also tend to avoid activities where I am required to bend over as this worsens my tinnitus. Exercise is necessary and I find biking or walking are best. I have difficulty going to noisy environments because I also have hyperaccusis an over sensitivity to sounds. I wear hearing protection to prevent the pain of loud sounds such as at a restaurant or party, forget about concerts! I hope that you wife can find some solutions for her problems but one thing she can be sure of is that she is not alone.

Willows

REPLY
@willows

My sympathy to your wife for her pain and tinnitus. I have suffered from debilitating noise induced tinnitus for over 30 years so I know what she is going through, in part. The only medication that has helped me somewhat is amitriptyline with lyrica. In terms of NSAIs aspirin is the worst, Tylenol is better. It is a problem not being able to use painkillers at all. Worse it is very awful being afraid to try any new medications. Especially when they are for necessary ailments. For example, I have asthma and must use a pump to clear the airways. Must also take medications for high blood pressure. Most tinnitus sufferers feel that way. Your wife is not alone in this. Her jaw condition makes things more problematic for her.
I have some masking sounds that I use every night called Petroff technologies. I use ear buds and turn on one of the sounds e.g. water or nature and I play them as softly as possible to be effective maskers all night. Without them it would be difficult to get a good nights sleep. I also tend to avoid activities where I am required to bend over as this worsens my tinnitus. Exercise is necessary and I find biking or walking are best. I have difficulty going to noisy environments because I also have hyperaccusis an over sensitivity to sounds. I wear hearing protection to prevent the pain of loud sounds such as at a restaurant or party, forget about concerts! I hope that you wife can find some solutions for her problems but one thing she can be sure of is that she is not alone.

Willows

Jump to this post

Good morning @willows, thank you for posting your tinnitus struggles and history of the things you have tried. Is yours in just one ear or both? Has it ever moved from one ear to another? Have you ever heard what felt like a hairbrush in your ear canal? Or when you move your jaw back and forth it changes the noise accordingly?

I checked out your Petroff audio products. I often use the Tulip drum music for relaxation. Years ago I traveled on business for 10 years. The ENR clinician taught me how to use biofeedback tapes to avoid what was probably tinnitus. I was hit by another car on the freeway and suffered head injuries. I also packed a shoulder stretcher that I hung over the closet door in my hotel room. And that was before opioids and medical cannabis. So…I just had a sip of Jack Daniels.

Here's a laugh…….we usually had several copies of the NY Times newspaper and I would start a contest to see who could finish the crossword puzzle first or get certain hard words. This was before cell phones or the internet and because I flew so much, I usually was seated in first class with all the other "suits" as we called them. I was often the only woman upfront and I loved challenging them on the crossword puzzles. Amazing how a three-hour gate hold could be a vocabulary lesson.

What is the sound protection that you wear? You had tinnitus for 30 years and you found ways not to let it drive you crazy. Congratulations. It doesn't sound like you were enticed to spend money on untested treatments.

How does exercise….walking, and biking….help with tinnitus? I walk a lot. Should I be doing something while I walk? iPods?

@tjadam Are you seeing something that can help your wife?

May you all be safe and protected from inner and outer harm.
Chris

REPLY

Has anyone used or been treated with Sanexas and if so any results?

REPLY
@amandajro

Hello @tjadam. I would like to extend my welcome to Mayo Clinic Connect along with @artscaping, who I see has replied to you and who can certainly understand what it is your wife has been going through.

You will notice that I have moved your post into an existing discussion on tinnitus and neuropathy to allow you to both review the previous comments as well as to connect with members such as @artscaping @avmcbellar @ken82 and @jenniferhunter who were all most recently active in this discussion and may be able to provide support for you and your wife as well.

What are you most interested in learning from other members so they may provide you with relevant information to help?

Jump to this post

Thank you Amanda. For now, I am just seeing who else out here may suffer similar symptoms as my wife. She feels very alone in this and eventually I would love to try to introduce her to you all.

REPLY
@artscaping

Good afternoon @tjadam, welcome to Connect. And greetings to your wife. She is lucky to have you watching out for her. That is something I also have…..a wonderful life partner who patiently flows up and down with my life filled with ISFN. It seems like everything we do depends on what kind of day I am having with my pain and that noisy and unwelcome tinnitus.

How is her your wife's jaw tremor adding such horrible pain to tinnitus? Is there pain in her peripheral elements….arms, legs, feet, hands, and fingers? If she is taking gabapentin is it all at one time of day or spread out morning, noon, and night? What is the tinnitus about and what medications have you tried? I found that I can keep the tinnitus in a memory book and not actively in my head. Mindfulness helps me keep the tinnitus at bay.

I have exactly the same medical issues as your wife, ISFN, tinnitus, and neuropathy pain, numbness, and tingling in legs, arms, and even my skull. I have tapered down to 600 mg of bedtime gabapentin after replacing another 600 mg with medical cannabis. Ambien was tried pre-surgery one time and was way too frightening for me. I now use a 2:1 CBD/THC tincture which is just perfect to permit sleep with no side effects.

My PCP and I do an annual evaluation of the efficacy of all treatments and medications. This year we will do that next week. We use a shared decision-making strategy to modify what I call "The Plan". New to the Plan will be possible solutions for what I call neuropathic itch. If your wife does not have it……then celebrate.

My life is enriched by and responsive to daily Yoga, mindfulness, and meditation. Mindfulness, in and of itself, is my first stop when I feel a bit out of control with pain or raucous tinnitus.

Remember please, that as of today, there is no cure for neuropathy. There are reports of research going on in three companies right now with the hope of improving the speed with which nerves can be regenerated. We can share hope.

May you and your wife have happiness and the causes of happiness.
Chris

Jump to this post

Chris,
Thank you for sharing. My wife’s jaw tremor does not make the tinnitus worse, but the tremor makes her jaw hurt constantly(from the constant movement.). She wears a bite guard at night for she worries the tremor makes her teeth chatter and is causing teeth and gum damage.
I think she would really like you. She also does a lot of mindfulness and does enjoy yoga.
She did try the CBD once and it also made the tinnitus horribly worse for her.
I wrote to Amanda moments ago that I was hoping to see if anyone else out here has similar symptoms as my wife for she feels very alone in this and that no one understands what she is going through. My hope is that I can introduce her to you all one day. Thank you for your response and I wish you the best as well.
T.J.

REPLY
@willows

My sympathy to your wife for her pain and tinnitus. I have suffered from debilitating noise induced tinnitus for over 30 years so I know what she is going through, in part. The only medication that has helped me somewhat is amitriptyline with lyrica. In terms of NSAIs aspirin is the worst, Tylenol is better. It is a problem not being able to use painkillers at all. Worse it is very awful being afraid to try any new medications. Especially when they are for necessary ailments. For example, I have asthma and must use a pump to clear the airways. Must also take medications for high blood pressure. Most tinnitus sufferers feel that way. Your wife is not alone in this. Her jaw condition makes things more problematic for her.
I have some masking sounds that I use every night called Petroff technologies. I use ear buds and turn on one of the sounds e.g. water or nature and I play them as softly as possible to be effective maskers all night. Without them it would be difficult to get a good nights sleep. I also tend to avoid activities where I am required to bend over as this worsens my tinnitus. Exercise is necessary and I find biking or walking are best. I have difficulty going to noisy environments because I also have hyperaccusis an over sensitivity to sounds. I wear hearing protection to prevent the pain of loud sounds such as at a restaurant or party, forget about concerts! I hope that you wife can find some solutions for her problems but one thing she can be sure of is that she is not alone.

Willows

Jump to this post

Willow,
Thank you for writing and sharing your story. My wife sounds similar to you in that she too enjoys stationary biking and walking as well. I am hoping to introduce her to you all here one day when she is ready. You are absolutely am amazing and I can’t thank you enough for replying, writing and sharing your story with me.

REPLY

I don’t believe Tinnitus that’s associated with neuropathy I had Tinnitus in my left ear really bad for 20 years and then I got neuropathy in my legs and feet 20 years later. You never know though?

REPLY

I have tinnitis too, I've had it off and on most of my life. I've tried to correlate it to anything I do or eat or any medicine I take but I don't find any connection. I've tried over the counter holistic remedies – they did nothing. Tinnitis seems to come and go randomly. Peggy

REPLY
@tjadam

My wife suffers greatly from idiopathic small fiber neuropathy as well as tinnitus. She takes gabapentin and some sleep medicine(Ambien), but most medications, even at micro doses causes horrible tinnitus(ringing, almost siren levels, in her ears). She is now extremely hesitant to take anything.
On top of this, she has a jaw tremor(her neurologist considers this hyper-excitability due to the ISFN), which is causing horrible jaw pain, which she can not take any medication for, due to the tinnitus.
She feels like she is the only one going through this. Any one else have anything remotely like this? And any suggestions?
Thank you. I am glad you are all here to run this by.

Jump to this post

Hello. I’m so sorry your wife has this too-it’s horrible. I have spams in my ears with mine n it’s so painful.
I’m using Gymnema Sylvestere. It’s an herb, once a day. It’s great n really works. Most of my help is all herbal because I lost my pain clinic n so was bedridden for a yr. I had to find help.
Also look at gut health, thyroid and eating mostly organic.
I follow patients on neuropathy sites to get info.
I use primrose oil, kava( muscle twitches),lemon balm, St. John’s wort, n Passion flower ( sleep).
Prayers for you both n good luck.

REPLY

Has anyone heard of Maritime Pine as an herb for tinnitus? I read about it recently and am curious

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