- Jan 10, 2022
- 14
- Tinnitus Since
- Started 2014, Spiked 11/21 after booster
- Cause of Tinnitus
- Too many possible causes, see "about" section
So real quick... I first noticed tinnitus after my 3rd car wreck with whiplash (t-boned once, rear ended twice). On a scale of 1-10 it was a 2, just a nuisance. I only noticed it in quiet rooms or when somebody said the word tinnitus. After getting the COVID-19 booster shot in November 2021 I got Guillain-Barré the same day and then my tinnitus spiked to a solid 11. I was paralyzed with anxiety and insomnia, about 1-3 hours of sleep a night for 2 months, I was even taking Xanax at that time and still couldn't sleep, and I'd wake up with panic attacks. I was out of my mind and thinking really bad thoughts, lack of sleep can make you crazy, so I don't even remember those two months. I didn't work, I didn't sleep, I didn't eat, nothing brought me joy, I thought I was going to lose my house.
My sister kept saying "this isn't forever, this is just right now, it will get better".
It got better (as my sister, and many of you, said it would, thank you!). The tinnitus became easier to handle with medications and tools, I started eating, working and most importantly sleeping. My anxiety dropped and I've slowly started doing things I used to do. Pleasure and joy now seems like a possibility to me. I was prescribed several things by an PCP, ENT and neurologist. They all told me since COVID-19 and the vaccines started they have all seen a huge increase in patients coming in and complaining of tinnitus after getting the vaccine. Unfortunately they're mostly clueless. My ENT thinks the noise comes from the ear and she had never heard of the possible cures for deafness (FX-322 & FX-345). The first thing they should do is have the person start on an 18-day Prednisone taper, then go from there. You know it's bad when every specialist you see says "have you tried acupuncture?". Nothing against acupuncture, but really? Yes, I had many acupuncture sessions. My ENT and neurologist think my tinnitus is probably related to my nerve damage and, that said, nerves heal (but typically take about a year) and there is hope in that.
Things I've taken that helped:
Gabapentin - 400 mg x 3 daily. This is a GABA and Serotonin agonist and a Glutamate and Norepinephrine antagonist, and it's an anti-convulsant. It's supposed to calm the brain and stop unnecessary electrical activity. Initially I had awful side effects and stopped taking it, but then the nerve tingling, numbness and neuropathy came back so I went back on it. My neurologist was shocked this did not help my tinnitus, so I'm thinking he's had some success with it. I guess it did help a little, at any time I could have up to 3 different tones that were pulsatile, up and down, warbling side to side. After taking this it combined the 3 tones into one high pitched whistle like tone. It's crazy but that was actually an improvement, you can never habituate to inconsistent alternating tones.
It doesn't really help with tinnitus. And I know it's a bad drug, but it helps with my nerve issues and may help with tinnitus in the long run and the more GABA in my brain, the better.
Kudzu Root - This is a nasty invasive vine that they call "the vine that ate the south." I have this in my yard, the roots are so strong you can't pull them out, the vine just snaps and gets angry at you, the next day it's bigger and there's more of them. I hate this vine...
I love this vine... I ordered a bottle of Kudzu Root extract, 1200 mg, I take it 3 x daily. It's an ancient Chinese herbal medicine used specifically to treat alcoholism and tinnitus. I've been taking it for about a week and my tinnitus is about 40% quieter, the pulsatile whistle like pitch (up to 3 different tones) has changed to a single solid lower tone. I also went out with friends, had a few, had several, but it was so good to get out of the house, you know with COVID-19, tinnitus and hyperacusis. Anyway, I wore earplugs and my tinnitus masking Aftershokz bone conduction headphones. So the next day I woke up early and felt great, felt like I had not had a drink.
Tools - I only found two 8 kHz bimodal-neuromodulated white noise videos that perfectly mask my tinnitus and are less annoying than my tinnitus. So I downloaded the 8 kHz videos (the pitch of my worst tinnitus spike) and converted them to mp3s, loaded them on an old spare Android and use Bluetooth Aftershokz bone conduction headphones (I don't like anything in my ears), and at night I use Bluetooth sleep headphones. I am now getting a good 7 hours of sleep a night with the help of Gabapentin and Lorazepam (I don't take them together).
Things that didn't help:
Upper Cervical Chiropractor - Spent a lot of money on this guy, he told me my 3 car accidents caused my tinnitus and said the proof was that it was pulsatile and it got worse when I turned my neck to the right. So I had 10 of 16 treatments (he gave me a package "deal") and no improvement, in fact my neck and back hurts more than ever.
Prednisone - This helped with the tingling, numbness and neuropathy but not the tinnitus. It was prescribed for me way too late. It can help with hearing loss and possibly tinnitus depending on the cause of the tinnitus. I believe my tinnitus was caused by an autoimmune inflammatory response and I believe if I'd gone to a doctor and asked for this within 2-3 days after the spike it just may have helped. Live and learn.
Supplements: - I spent a lot of money on some of the suggested supplements on Tinnitus Talk (too many to list here), so much money wasted. Most just didn't do anything, but I probably didn't give them enough time, if I got a spike or didn't notice any improvement I'd move on to the next one. But you have to try, the hope is what keeps me going. I know two other people who have tinnitus and would love to find something that helps all of us, I truly believe god (not a religious nut), the universe, or whatever has provided natural cures to most of our ailments. Inflammation is the cause of 70% of all diseases. So I started taking anti-inflammatories like Ginger root, Boswellia, Omega-3 & Chlorella, these do great things, I probably only need to take the Chorella, it's packed with B vitamins, minerals, it's a super food and is being used to repair nerve damage.
Things that caused a spike:
Amitriptyline - Spiked my tinnitus bad. I asked my doctor for this as internet said it would help.
Nortriptyline - Spiked my tinnitus bad. My neurologist prescribed this, I knew it wouldn't work, it increases Nortriptyline, an excitatory neurotransmitter.
Campral (Acamprosate) - I took one pill and my tinnitus was spiked for 24 hours. A huge disappointment, it came with a lot of hype and was hoping for at least a small improvement, not a dreaded spike. It was really hard to get my doctor to prescribe it and my insurance refused to pay for it and they probably think I'm an alcoholic now...
Taurine, L-Arginine, L-Theanine, 5-HTP, Spicy food
Things that TICK ME OFF:
Rich people with tinnitus:
Brian Johnson of AC/DC. He had almost total hearing loss and tinnitus, it was so bad the band kicked him out because they cared for him. He is now back with them and touring, saying in an interview that he worked with "a doctor" who over several months cured his hearing loss. The whole interview was purposely vague, he refused to mention the doctor's name or the treatment he used. He should be trying to help others.
Dave Grohl of Foo Fighters. He had almost total hearing loss and severe tinnitus in his left ear for 30 years, he still tours and refuses to wear protection that almost all professional musicians use these days. Why doesn't he get a cochlear implant? It's only $8K, it can't hurt and it might help his tinnitus.
Then there's Ozzy, members of The Who, Metallica etc... So many wealthy musicians with tinnitus. They should be leading the charge for a cure, they should be raising awareness, they've all got so much money, they can jump on a plane and go to South Korea, have their own stem cells implanted in their ears. Get cochlear implants, or buy their way into one of the FX-322 & FX-345 clinical trials.
Kent Taylor - Owner of the Texas Roadhouse, a local restaurant chain in Tampa Bay where I live. He got COVID-19, and then tinnitus. I met someone who knew him personally and she said it drove him mad and he committed suicide. He had to have other issues but it really hits me in the gut when I hear of someone ending their life over something that is not terminal and can be masked in most cases. And there is hope, you see posts on here of people who have had their tinnitus disappear or lessen to a more tolerable degree. And there are new treatments popping up all the time. He did raise awareness in a bad way, if you mention tinnitus around here in Tampa Bay, many people will say "did you hear about the owner of Texas Roadhouse".
The FDA
These SOBs approved an experimental COVID-19 vaccine in 9 months that gives some people tinnitus (or worse things) yet they take 10 years to approve treatments that may help cure tinnitus. I met someone the other day that said he had a neighbor who became a paraplegic right after taking the COVID-19 vaccine. My neurologist told me I was lucky, said I could have gone blind, deaf or paralyzed from the Guillain-Barré. The staff at CVS pharmacy know me by name due to all the prescriptions I've been trying out. One of the pharmacists is fascinated with my case, she came up to me and said "you know, I looked on the Moderna vaccine warning label and it says "may cause tinnitus". She is now an anti-vaxxer, says she won't get another vaccine, I told her most vaccines have that warning on them.
The FDA should at least warn people like me who have auto-immune diseases (Vitiligo) that getting a vaccine may be very dangerous.Like I said, live and learn.
My sister kept saying "this isn't forever, this is just right now, it will get better".
It got better (as my sister, and many of you, said it would, thank you!). The tinnitus became easier to handle with medications and tools, I started eating, working and most importantly sleeping. My anxiety dropped and I've slowly started doing things I used to do. Pleasure and joy now seems like a possibility to me. I was prescribed several things by an PCP, ENT and neurologist. They all told me since COVID-19 and the vaccines started they have all seen a huge increase in patients coming in and complaining of tinnitus after getting the vaccine. Unfortunately they're mostly clueless. My ENT thinks the noise comes from the ear and she had never heard of the possible cures for deafness (FX-322 & FX-345). The first thing they should do is have the person start on an 18-day Prednisone taper, then go from there. You know it's bad when every specialist you see says "have you tried acupuncture?". Nothing against acupuncture, but really? Yes, I had many acupuncture sessions. My ENT and neurologist think my tinnitus is probably related to my nerve damage and, that said, nerves heal (but typically take about a year) and there is hope in that.
Things I've taken that helped:
Gabapentin - 400 mg x 3 daily. This is a GABA and Serotonin agonist and a Glutamate and Norepinephrine antagonist, and it's an anti-convulsant. It's supposed to calm the brain and stop unnecessary electrical activity. Initially I had awful side effects and stopped taking it, but then the nerve tingling, numbness and neuropathy came back so I went back on it. My neurologist was shocked this did not help my tinnitus, so I'm thinking he's had some success with it. I guess it did help a little, at any time I could have up to 3 different tones that were pulsatile, up and down, warbling side to side. After taking this it combined the 3 tones into one high pitched whistle like tone. It's crazy but that was actually an improvement, you can never habituate to inconsistent alternating tones.
It doesn't really help with tinnitus. And I know it's a bad drug, but it helps with my nerve issues and may help with tinnitus in the long run and the more GABA in my brain, the better.
Kudzu Root - This is a nasty invasive vine that they call "the vine that ate the south." I have this in my yard, the roots are so strong you can't pull them out, the vine just snaps and gets angry at you, the next day it's bigger and there's more of them. I hate this vine...
I love this vine... I ordered a bottle of Kudzu Root extract, 1200 mg, I take it 3 x daily. It's an ancient Chinese herbal medicine used specifically to treat alcoholism and tinnitus. I've been taking it for about a week and my tinnitus is about 40% quieter, the pulsatile whistle like pitch (up to 3 different tones) has changed to a single solid lower tone. I also went out with friends, had a few, had several, but it was so good to get out of the house, you know with COVID-19, tinnitus and hyperacusis. Anyway, I wore earplugs and my tinnitus masking Aftershokz bone conduction headphones. So the next day I woke up early and felt great, felt like I had not had a drink.
Tools - I only found two 8 kHz bimodal-neuromodulated white noise videos that perfectly mask my tinnitus and are less annoying than my tinnitus. So I downloaded the 8 kHz videos (the pitch of my worst tinnitus spike) and converted them to mp3s, loaded them on an old spare Android and use Bluetooth Aftershokz bone conduction headphones (I don't like anything in my ears), and at night I use Bluetooth sleep headphones. I am now getting a good 7 hours of sleep a night with the help of Gabapentin and Lorazepam (I don't take them together).
Things that didn't help:
Upper Cervical Chiropractor - Spent a lot of money on this guy, he told me my 3 car accidents caused my tinnitus and said the proof was that it was pulsatile and it got worse when I turned my neck to the right. So I had 10 of 16 treatments (he gave me a package "deal") and no improvement, in fact my neck and back hurts more than ever.
Prednisone - This helped with the tingling, numbness and neuropathy but not the tinnitus. It was prescribed for me way too late. It can help with hearing loss and possibly tinnitus depending on the cause of the tinnitus. I believe my tinnitus was caused by an autoimmune inflammatory response and I believe if I'd gone to a doctor and asked for this within 2-3 days after the spike it just may have helped. Live and learn.
Supplements: - I spent a lot of money on some of the suggested supplements on Tinnitus Talk (too many to list here), so much money wasted. Most just didn't do anything, but I probably didn't give them enough time, if I got a spike or didn't notice any improvement I'd move on to the next one. But you have to try, the hope is what keeps me going. I know two other people who have tinnitus and would love to find something that helps all of us, I truly believe god (not a religious nut), the universe, or whatever has provided natural cures to most of our ailments. Inflammation is the cause of 70% of all diseases. So I started taking anti-inflammatories like Ginger root, Boswellia, Omega-3 & Chlorella, these do great things, I probably only need to take the Chorella, it's packed with B vitamins, minerals, it's a super food and is being used to repair nerve damage.
Things that caused a spike:
Amitriptyline - Spiked my tinnitus bad. I asked my doctor for this as internet said it would help.
Nortriptyline - Spiked my tinnitus bad. My neurologist prescribed this, I knew it wouldn't work, it increases Nortriptyline, an excitatory neurotransmitter.
Campral (Acamprosate) - I took one pill and my tinnitus was spiked for 24 hours. A huge disappointment, it came with a lot of hype and was hoping for at least a small improvement, not a dreaded spike. It was really hard to get my doctor to prescribe it and my insurance refused to pay for it and they probably think I'm an alcoholic now...
Taurine, L-Arginine, L-Theanine, 5-HTP, Spicy food
Things that TICK ME OFF:
Rich people with tinnitus:
Brian Johnson of AC/DC. He had almost total hearing loss and tinnitus, it was so bad the band kicked him out because they cared for him. He is now back with them and touring, saying in an interview that he worked with "a doctor" who over several months cured his hearing loss. The whole interview was purposely vague, he refused to mention the doctor's name or the treatment he used. He should be trying to help others.
Dave Grohl of Foo Fighters. He had almost total hearing loss and severe tinnitus in his left ear for 30 years, he still tours and refuses to wear protection that almost all professional musicians use these days. Why doesn't he get a cochlear implant? It's only $8K, it can't hurt and it might help his tinnitus.
Then there's Ozzy, members of The Who, Metallica etc... So many wealthy musicians with tinnitus. They should be leading the charge for a cure, they should be raising awareness, they've all got so much money, they can jump on a plane and go to South Korea, have their own stem cells implanted in their ears. Get cochlear implants, or buy their way into one of the FX-322 & FX-345 clinical trials.
Kent Taylor - Owner of the Texas Roadhouse, a local restaurant chain in Tampa Bay where I live. He got COVID-19, and then tinnitus. I met someone who knew him personally and she said it drove him mad and he committed suicide. He had to have other issues but it really hits me in the gut when I hear of someone ending their life over something that is not terminal and can be masked in most cases. And there is hope, you see posts on here of people who have had their tinnitus disappear or lessen to a more tolerable degree. And there are new treatments popping up all the time. He did raise awareness in a bad way, if you mention tinnitus around here in Tampa Bay, many people will say "did you hear about the owner of Texas Roadhouse".
The FDA
These SOBs approved an experimental COVID-19 vaccine in 9 months that gives some people tinnitus (or worse things) yet they take 10 years to approve treatments that may help cure tinnitus. I met someone the other day that said he had a neighbor who became a paraplegic right after taking the COVID-19 vaccine. My neurologist told me I was lucky, said I could have gone blind, deaf or paralyzed from the Guillain-Barré. The staff at CVS pharmacy know me by name due to all the prescriptions I've been trying out. One of the pharmacists is fascinated with my case, she came up to me and said "you know, I looked on the Moderna vaccine warning label and it says "may cause tinnitus". She is now an anti-vaxxer, says she won't get another vaccine, I told her most vaccines have that warning on them.
The FDA should at least warn people like me who have auto-immune diseases (Vitiligo) that getting a vaccine may be very dangerous.Like I said, live and learn.
Member
Gabapentin has also helped me get a good night's sleep. For most people, antidepressants like Amitriptyline have a calming effect and are good at relieving pain. I was having severe headaches and my ENT and Neurologist thought my tinnitus might be caused by "atypical migraine" and they thought an anti-depressant would help. My headaches are gone now, not sure if it's from the Kudzu Root or the end of allergy season here in Florida. 
