Tinnitus//Constant Ringing in the Ears//No Sleep

ccc2020

Hi all,

I am suffering from tinnitus (constant ringing in the ears), as one of the side effects post IV and oral chemotherapy for stage 3C colon cancer. It first began as soft sounds just here and there, but now about 6 months after the ringing began, it has gotten significantly worse -- I now hear the noises (varies in sound and volume level from pinging noises to cricket noise to high pitch screeches to wind whoosing ...it's so difficult to describe) constantly and literally 24/7 (not exaggerating), and I cannot sleep at all because of it. I am so tired and exhausted and the ringing is killing me. I have gone to 3 ENT docs and 2 of them said there's no cure. 1 of the ENT docs let me try flavonoid supplements but that did not work at all. I have also gone to a neurologist to get an MRI to get my brain checked out...scans are normal. The neurologist put me on several combinations of sleeping meds to try for a few months, but they helped just briefly (maximum positive effect lasted maybe one week where I got to sleep for 1-2 hours straight but that's it); otherwise, nothing has or is working. I am in bed all night trying to fall asleep but I cannot! I go to bed relaxed as much as I can but I still cannot sleep. During the day, I found it a bit helpful to listen to "tinnitus sound therapy" channels and videos I found on YouTube to distract my focus away from paying attention to the constant ear ringing, but the distraction is only temporary. I also try to sleep with these "sound therapy" music at night too, but I cannot sleep more than 1-2 hours maximum, if at all. I am going crazy without sleeping. I have chronic widespread pain too, so that plus lack of sleep has made my mind foggy and I can't focus. My body is slowly dying and getting week --- first due to the side effects of chemo and then second due to lack of sleep/tinnitus and fibromyalgia/chronic pain.

I do not know where else to turn to for help. I am seeking any hopeful tinnitus relief for my ears so that I can please have some rest/sleep. My body is reaching its limits of not being able to function well without proper sleep. 

Has anyone heard or personally done any treatments that have helped to relieve their tinnitus (constant ear ringing)? Have you tried or heard of any clinical trials or herbal treatments or anything else that seem to help patients who are suffering from tinnitus? I welcome any treatment suggestions! Thank you so much for taking the time to listen to/read a small part of my story. Thank you in advance for your help and suggestions. 

Trubrit

Hello, and welcome to the forum

I too have Tinnitus, all day and all night, though for me it is just a high pitched squeel that is constant.  

Because I have periodic vertigo episodes, due to a canoe accident, I get the clicking sound, but know it is related to the vertigo, and usualy preceeds an episode. 

Right now, I am going to be of no help to you, as I have not done anything about the tinnitus. During the day, I am usually busy enough that it is just a mild distraction, and during the night it has rarely kept me awake.  I do play my Zen music to get to sleep, and that distracts enough for me. 

Again, I know I'm not giving you any help at all, but just wanted to welcome you to the forum. 

Hopefully others here will be able to advice. 

One thing that does help - sometimes - with a restless night, is meditation.  There, my one bit of advice. 

I hope you find some relief soon. 

Tru

SnapDragon2

I have a little cricket

I have a little cricket/clicking sound going on and think its chemo related.  I also have more earwax in one ear.

suzycruise76

Hi ccc 2020,

I read just recently about vitamin B12-and this is what I remember (I copied and pasted it for you):

 [23] Vitamin B12 deficiency may cause the demyelination of neurons in the cochlear nerve, resulting in hearing loss and tinnitus.

Maybe it can help?  All the best,

Suzy

Annabelle41415

Welcome

Welcome to our board and I'm sorry that you have to be here.  I'm not able to help you and not sure what other avenue you should go.  It looks like you have tried a number of different options.  My father also suffers from extreme ringing in his ears constantly and has tried eveything as well.  Hoping that you can get some relief and some answers.

Kim

SnapDragon2

suzycruise76 said:

Hi ccc 2020,

I read just recently about vitamin B12-and this is what I remember (I copied and pasted it for you):

 [23] Vitamin B12 deficiency may cause the demyelination of neurons in the cochlear nerve, resulting in hearing loss and tinnitus.

Maybe it can help?  All the best,

Suzy

Interesting!

Interesting!

beaumontdave

I've got it, most of the time

I've got it, most of the time. Starts when drinking coffee, taking pills, or just because. Since I've neither read nor heard of any good cures for it, I just ignore it as best I can. It rarely keeps me from sleep, but if I need to really relax I use meletonin, Benadryl, or the prescription Xanax that I received at diagnosis, long ago. I don't know if the noise stops, but I do go to sleep. If someone has a better, established means of muting the buzz, please list it................................................Dave

feckcancer

suzycruise76 said:

Hi ccc 2020,

I read just recently about vitamin B12-and this is what I remember (I copied and pasted it for you):

 [23] Vitamin B12 deficiency may cause the demyelination of neurons in the cochlear nerve, resulting in hearing loss and tinnitus.

Maybe it can help?  All the best,

Suzy

pelvic radiation can cause lack of VitB12

That's really interesting. In the year after radiation/chemo i got every bug going and seemed to have a constant colds & flu . when they finally went away i was left with slight tinnitus & feeling like i couldn't quite hear properly. it then got even worse a year later when i took 18 months to slowly get weaned off high doses of effexor (anti depressant) which one of the withdrawals is brain and ear zaps. I assumed the tinnitus was a combination of those 2 things as i had read the chemo could affect your ears and going off effexor had left some people with tinnitis.

anyways, also in that time i was diagnosed with a vitimin B12 deficiency & had to have injections for a while and now always take supplements. i have read pelvic radiation & diarrhea can cause vitb12 not to be absorbed so maybe thats what it was all along. have noticed the ringing is less since i have upped my Vit B dose and added vit D in this corona 19 pandemic.

If you tap your fingers on the bones behind your ears it can sometimes help quieten it down, i think it's something to do with the vibrations? 

Tueffel

Muscle related

Hey,

A few years back I had a trauma and for 2 and a half weeks a tinnitus as well. I know how you feel. It is terrible and I am sure all the things I did to fall asleep you already did.

I am just writing cause I saw a video about neck muscle stiffness that could cause tinnitus. It was a patient who had tinnitus aswell for quite a long time. of course his case is different than yours but considering that you already tried everything and nothing was working it could be a different pathway to go. Maybe it might help to go to an orthopedic doctor, let your neck muscles get checked and if your posture is correct. Maybe simple muscle workout for your neck lessen the tinnitus? I dont know if it could work, I hope so, just wanted to mention this possibility for you to try.

Tueffel

ccc2020

Trubrit said:

Hello, and welcome to the forum

I too have Tinnitus, all day and all night, though for me it is just a high pitched squeel that is constant.  

Because I have periodic vertigo episodes, due to a canoe accident, I get the clicking sound, but know it is related to the vertigo, and usualy preceeds an episode. 

Right now, I am going to be of no help to you, as I have not done anything about the tinnitus. During the day, I am usually busy enough that it is just a mild distraction, and during the night it has rarely kept me awake.  I do play my Zen music to get to sleep, and that distracts enough for me. 

Again, I know I'm not giving you any help at all, but just wanted to welcome you to the forum. 

Hopefully others here will be able to advice. 

One thing that does help - sometimes - with a restless night, is meditation.  There, my one bit of advice. 

I hope you find some relief soon. 

Tru

Dear Tru,

Dear Tru,

 

Hello and thank you for the kind welcome and your reply. I am sorry that you also have to suffer from tinnitus and vertigo. I appreciate you sharing a bit of your story and giving me comfort to know that I am not the only person dealing with this horrible tinnitus as well. Thank you for the advice -- I will try Zen music and practice meditation. Again, thank you. 

ccc2020

SnapDragon2 said:

I have a little cricket

I have a little cricket/clicking sound going on and think its chemo related.  I also have more earwax in one ear.

Hi SnapDragon2,

Hi SnapDragon2,

Thank you for your response. I am sorry to hear that you have these irritable sounds/tinnitus as well. I do think (and have had some professionals also tell me the same) that my tinnitus is a severe side effect of my chemo treatment... I read somewhere that the chemo drugs are toxic to the ears...

It's quite unfortunate and now we both have to suffer from this...

Praying for some cure....

ccc2020

suzycruise76 said:

Hi ccc 2020,

I read just recently about vitamin B12-and this is what I remember (I copied and pasted it for you):

 [23] Vitamin B12 deficiency may cause the demyelination of neurons in the cochlear nerve, resulting in hearing loss and tinnitus.

Maybe it can help?  All the best,

Suzy

Hi Suzy,

Hi Suzy,

Thank you for your reply. I really appreciate your help. I had no idea about Vitamin B12 deficiency...I will definitely look more into this. Thank you very much.

ccc2020

feckcancer said:

pelvic radiation can cause lack of VitB12

That's really interesting. In the year after radiation/chemo i got every bug going and seemed to have a constant colds & flu . when they finally went away i was left with slight tinnitus & feeling like i couldn't quite hear properly. it then got even worse a year later when i took 18 months to slowly get weaned off high doses of effexor (anti depressant) which one of the withdrawals is brain and ear zaps. I assumed the tinnitus was a combination of those 2 things as i had read the chemo could affect your ears and going off effexor had left some people with tinnitis.

anyways, also in that time i was diagnosed with a vitimin B12 deficiency & had to have injections for a while and now always take supplements. i have read pelvic radiation & diarrhea can cause vitb12 not to be absorbed so maybe thats what it was all along. have noticed the ringing is less since i have upped my Vit B dose and added vit D in this corona 19 pandemic.

If you tap your fingers on the bones behind your ears it can sometimes help quieten it down, i think it's something to do with the vibrations? 

Hi feckcancer,

Hi feckcancer,

Thank you for sharing your story and for your response. I am so sorry that you had to deal with so much. I appreciate this insight regarding the B12 deficiency and how upping Vit B dose and Vit D have both relieved your symptoms. I will definitely look more into this and ask my doctor as well. An interesting note about tapping the bones behind the ears...I have previously seen something similar in a YouTube video...I am willing to try anything. Thanks again. Take care.

ccc2020

Annabelle41415 said:

Welcome

Welcome to our board and I'm sorry that you have to be here.  I'm not able to help you and not sure what other avenue you should go.  It looks like you have tried a number of different options.  My father also suffers from extreme ringing in his ears constantly and has tried eveything as well.  Hoping that you can get some relief and some answers.

Kim

Hi Kim,

Hi Kim,

Thank you so much for the warm welcome. Yes, it is unfortunate that we are all here, but I am so glad to know that there is an online support group. I am sorry your father suffers from tinnitus as well. I hope for all of us suffering from this that there will be greater research and potentially a cure someday. Wishing you all the best!

ccc2020

beaumontdave said:

I've got it, most of the time

I've got it, most of the time. Starts when drinking coffee, taking pills, or just because. Since I've neither read nor heard of any good cures for it, I just ignore it as best I can. It rarely keeps me from sleep, but if I need to really relax I use meletonin, Benadryl, or the prescription Xanax that I received at diagnosis, long ago. I don't know if the noise stops, but I do go to sleep. If someone has a better, established means of muting the buzz, please list it................................................Dave

Hi Dave,

Hi Dave,

Thanks for your response. I appreciate you sharing your story as well. Tinnitus really sucks (this is an understatement). I am sorry you have to suffer from it as well. I have tried melatonin and other over the counter meds myself, but still cannot sleep. I am glad to hear that you are able to catch some sleep. Again, thank you for your input. I hope someday there is a better solution and cure too. 

ccc2020

Tueffel said:

Muscle related

Hey,

A few years back I had a trauma and for 2 and a half weeks a tinnitus as well. I know how you feel. It is terrible and I am sure all the things I did to fall asleep you already did.

I am just writing cause I saw a video about neck muscle stiffness that could cause tinnitus. It was a patient who had tinnitus aswell for quite a long time. of course his case is different than yours but considering that you already tried everything and nothing was working it could be a different pathway to go. Maybe it might help to go to an orthopedic doctor, let your neck muscles get checked and if your posture is correct. Maybe simple muscle workout for your neck lessen the tinnitus? I dont know if it could work, I hope so, just wanted to mention this possibility for you to try.

Tueffel

Hello Tueffel,

Hello Tueffel,

Thank you for your input. I really appreciate it. I am sorry to hear that you also had to suffer from tinnitus on top of your trauma and everything else. 

That is really interesting! I will definitely look more into this and find a medical professional to help me. Thank you so much for this insight. I am willing to try everything. Again thanks and take care.

Tueffel

ccc2020 said:

Hello Tueffel,

Hello Tueffel,

Thank you for your input. I really appreciate it. I am sorry to hear that you also had to suffer from tinnitus on top of your trauma and everything else. 

That is really interesting! I will definitely look more into this and find a medical professional to help me. Thank you so much for this insight. I am willing to try everything. Again thanks and take care.

Dont worry

Tbh I just googled the English medical term and I had an acoustic shock. Just a loud sound and my inner ear did not like that. I wanted to specify that because your answer made me realize that it was misunderstanding and sounded worse than it actually was... It was just a chem experiment in high school that went wrong because I am an idiot. 

Just tell us later if and what helped you the most. I am sure there will always be some people who experienced it after chemo and need help. 

Take care!

Cindit

tinnitus

Hi, 

I also suffer from it but have for awhile due to my job (I am a transcriptionist and listen with earbuds....not so much anymore though).  It did get worse with chemo. I went to ENT in hopes of getting steroids injected but he wouldn't do it for some reason although with Covid going around, my oncologist said most likely due to it being an injection they probably didn't want to compromise me in any way but i heard that that works. Also, i took RingRelief for a bit and it did seem to help sometimes. I use noise machine at night and frankly if i don't think about it, i don't notice it too much. Sorry you're going through all that. I'm going to give it a few months after chemo stops and then see how it is and go to a different ENT for a second opinion. 

ccc2020

Tueffel said:

Dont worry

Tbh I just googled the English medical term and I had an acoustic shock. Just a loud sound and my inner ear did not like that. I wanted to specify that because your answer made me realize that it was misunderstanding and sounded worse than it actually was... It was just a chem experiment in high school that went wrong because I am an idiot. 

Just tell us later if and what helped you the most. I am sure there will always be some people who experienced it after chemo and need help. 

Take care!

Hi Tueffel, 

Hi Tueffel, 

Oh, I see. Thanks for clarifying. 

Will do, thank you!

Take care

ccc2020

Cindit said:

tinnitus

Hi, 

I also suffer from it but have for awhile due to my job (I am a transcriptionist and listen with earbuds....not so much anymore though).  It did get worse with chemo. I went to ENT in hopes of getting steroids injected but he wouldn't do it for some reason although with Covid going around, my oncologist said most likely due to it being an injection they probably didn't want to compromise me in any way but i heard that that works. Also, i took RingRelief for a bit and it did seem to help sometimes. I use noise machine at night and frankly if i don't think about it, i don't notice it too much. Sorry you're going through all that. I'm going to give it a few months after chemo stops and then see how it is and go to a different ENT for a second opinion. 

Hi Cindit,

Hi Cindit,

Sorry you're suffering from tinnitus as well. Thanks for sharing your experiences -- I will ask about steroid injections and see if that's a good option for me. I'm glad to hear that you got some relief with a white noise machine and RingRelief -- I tried RingRelief eardrops before and LipoFlavonoidPlus tablets, but neither worked for me. Thanks again for sharing and wishing you well throughout your chemotherapy.

Wishing you all the best and take care!

deblives5

thank you

I am so glad I found this discussion. I thought I was alone in dealing with tinnitus...

 

I will try some of these ideas.