Unsure What Type of Tinnitus I Have

I've been lurking here for a while now, and figured I'd talk about my situation.

So in 2019 I had a pretty bad concussion that never went away. I developed post-concussion syndrome from that. No tinnitus then. About two years later, I had the occasional heartbeat in my right ear or weird surreal sound in my right ear, but it averaged maybe once a month and lasted a few minutes at most. No big deal. I also developed other neck issues, cervical spondylosis, trigeminal neuralgia, etc, on the right side. I only rarely have those episodes now, and it's always on the right side.

During New Years 2022, I was outside with the dog a few hours before midnight, taking him to the bathroom. Someone in the neighborhood set off illegal fireworks. It wasn't a direct neighbor or anything, but the blasts were enough to muffle my hearing and give me very occasional tinnitus for three weeks before it faded.

Fast forward to April 2022. A musician I thought I'd never get to see was touring in my area. I don't do concerts, so I had no idea about hearing protection. I wanted to push myself to go out, because my post-concussion syndrome is incredibly disabling and I haven't left the house for anything but doctors for years. So I went, and it was super loud. Nobody else was wearing earplugs or anything, so I thought this was all normal. During the show the insides of my ears were throbbing and painful, but I was afraid to leave because the artist was chewing out other people for doing so. I was in there for at least 5 hours.

Immediately afterwards my hearing was extremely muffled. I got the occasional ringing, but mostly it was just muffled hearing. My ex-husband told me to vape weed to relax. I did, and the next day I woke up. I thought about, what if I get tinnitus, from stuff I was reading on the internet about how long it takes muffled hearing from a concert to go away. I listened to a bit of one of those tinnitus binaural beats videos. Soon afterwards, I got a noise in my right ear. Over time, it spread to the left ear as well. Sometimes it's in both ears, but usually it's mostly only in one. This has been my life since that horrible, horrible day two months ago.

I went to a GP a week later. He said there's nothing you can do for tinnitus (and even laughed about it), but also that I had ETD on both sides, a lot of congestion, and sunken in and dull eardrums, and to take a nasal steroid and antihistamine. I seem to have frequent issues like that, but I never notice it until a doctor mentions "oh by the way you're also super congested". I'm just used to not being able to really breathe well through my nose. Anyway, I took the medications for another week (only took the antihistamine once after I saw they are ototoxic, and just stuck to the nasal steroid and saline nasal irrigation), and then saw an audiologist. She found that I had hearing loss in my right ear only, and the next day she got me into to see an ENT. She seemed convinced that all I had was a temporary threshold shift and that the tinnitus and hearing loss would go away. The ENT gave me intramuscular dexamethasone. After a month, they rechecked my hearing and my hearing was back to normal. However there was zero effect on my tinnitus. Oh, I forgot to mention, I also developed hyperacusis after the concert and noises sound very loud to me now.

Backing up a bit, back in March of this year I had two episodes where I lost central vision in my right eye upon waking up. Since my concussion, I wake up daily with black splotches in my central vision. It clears up within a few minutes to 45 minutes. My NUCCA chiropractor refused to keep seeing me, and I had to get a CT scan with contrast of my head and neck. Both looked good. After I stopped going to the chiropractor, I started getting horrible pain under my skull, the back of my neck, behind my eye, tender SCM, etc. Doctors have commented that my neck and shoulders are extremely tight. That was before the tinnitus, but it continues to be an issue.

The ENT pretty much just gave me a paper with a shrink's number and a link to a masking app and said "sorry, it's for life". When I tried to mask it, I noticed I couldn't with a tone because my tinnitus does not sound like that. I found out that a few of my friends have tinnitus, but theirs is a straight ringing tone, like what you hear in a movie. I get that occasionally as well, even now, but only in the same way as normal people where it only lasts like a minute max and it is only very seldom.

My tinnitus sounds like a "tsst. tsst. tsst. tsst." and mostly resides in my left ear currently. It sometimes goes to the right side, or into both ears at once, usually as different volumes in each one with the left one being louder. I tried to replicate what I hear the best I could here: https://www.checkhearing.org/pulsat...=0.686&rangeLoudnessVari=0&toneType=buttonHum

The pitch (?) is much higher than that is. The pitch and loudness/softness keeps changing, but it is definitely rhythmic. It does seem to follow my pulse, but I don't know if it's pulsatile tinnitus because this was not an issue for me until after the concert. Likewise, I had a hearing loss and still have hyperacusis, so I'm pretty worried. Sometimes I wonder if it's psychological, but I have no idea.

I am seeing a physical therapist for my neck issues, and I notice that moving my neck and jaw in certain ways makes the tinnitus louder or quieter. For examples, doing chin tucks and moving my head back makes the tinnitus go bonkers. Doing median nerve glides as well causes ear fullness that fades after a bit. The ENT thought I might have a TMJ issue but I don't know. I have been using a custom fitted night guard for bruxism (which I definitely have) for three years now.

Also, the issue with my ETD (?), i.e. the ear popping, a tiny bit of fullness, and congestion, still has not cleared up months later. ENT says currently I have no earwax issues, my eardrums look good, and the pressure is good.

In sum I have no idea what's going on with me. It's been over two months now, and there has been no change in my tinnitus.

I feel deeply lost. I have a degenerative eye issue, and I always figured, well, even if one day I go blind (my eyesight currently isn't the best), at least I would still have my hearing. Well... Likewise, the post-concussion syndrome and all of the vision, cognitive, and vestibular issues that go along with it are a nightmare. I have tried to get onto disability for help with all of the medical issues, but I got denied. Because of all of this stuff, I am very seriously considering ending my own life if this all does not improve after a year.

Supplements and medicines I have been taking.

- Barlean's Omega 3 fish oil 1,500mg
- Cataplex b (thiamin, niacin, vitamin b6, choline)
- L-5-MTHF (bioavailable folate, 850 mcg DFE)
- Magnesium L-threonate 144 mg
- Vitamin d3 2,000
- Histamine phosphate

I will add any major updates to this thread as I go through this.

I would be deeply grateful if anyone could offer any thoughts or insight into what my tinnitus might even be.

Thank you for reading.

 

Hey @dolphinskin - I don't have pulsatile tinnitus myself. I'm no expert, but if it follows your pulse, that does sound like pulsatile to me.

I've had my tinnitus for 3 months now, and around the 2-month mark, I too was having suicidal ideation. I can say that my resilience for my tinnitus has improved in the last month. Anti-anxiety/depression medication helped me a great deal to stabilize my mood. Many people say this, and I believe it to be true for the large majority of people with tinnitus: It gets better over time. Either the tinnitus settles, or you become more habituated to it. Both have slowly been happening to me. A few things have had a big impact for me: sleep, reducing anxiety, and exercise. The meds helped my anxiety a lot (still have it though) but sleep was my number 1 priority to get under control.

I also have neck issues (and spine issues). I can modulate my tinnitus by moving my neck and jaw. I chose to see a chiropractor due to my spine issues. My neck and shoulders are as you describe: seriously tense muscles. The chiropractor has been helpful in reducing the tension. Overall, I'd say that this has had a positive effect on my tinnitus. The intensity of my tinnitus on average is lower. An ENT who specialized in tinnitus told me that often people can modulate their tinnitus with their neck and jaw. He said he believes that our brains--in particular our basal ganglia--for some reason has learned that our neck/jaw nerves are important signals, and pays undue attention to them. Not sure how much to believe in that, but he's trying to explain why so many that experience tinnitus can modulate theirs.

Anyway, just wanted to say that I'll be around to listen to your updates, and I hope you bear with it. In my darkest hours, my wife has repeatedly told me, "You can do this, your mind is stronger than you know." You know what, she was right.

 

I apologise that this is a little bit late but I don't come on here so much these days.

I'm sorry to read that you've been having such a hard time lately. Many parts of your story sound familiar to my own, from the probable cause, your initial symptoms, your experience with doctors and even vision problems.

I'm sure you've read plenty of posts saying so by now, but I would like to reiterate that for at least the tinnitus, you're still very much in the acute stage and a lot can change for you in the coming months. I've now had 2 major episodes with debilitating tinnitus and both times it has subsided into the background over the course of several months, the hyperacusis and other ear problems along with them, there's plenty of hope for you yet, especially as your tinnitus seems to fluctuate so much, so don't give up prematurely.

 

So it's been over three months for me. No improvement. The only conclusion seems to be that we're 99% sure my tinnitus is pulsatile.

I've had intermittent whirring in my right ear only for over a year now. It's starting to happen more often.

I occasionally get the classic regular tinnitus ringing "eeeeeee" that goes away after a few minutes. It's intermittent but starting to come up more often. I got this going on at the same time as my 24/7 pulsatile tinnitus that's been going on for three months now. So I'm guessing that means I have chronic pulsatile tinnitus and not tinnitus.

However my pulsatile tinnitus seems to switch ears or sometimes happen with both at the same time, and I don't know if this is normal.

I keep waking up to strong pulsing sounds and sensation around the back of my neck and in my ear. I frequently see my heartbeat in my eye (left only) and it's in sync with the pulsatile tinnitus.

I don't know what to do. I've spent four figures and nothing has come of it. ENT didn't even check to see if I was congested even though I paid $200. Maybe I have TMJ. Maybe I still have ETD. I don't even know what's wrong with me. Nobody is helping. I don't know where to go or what to do. I'm trying so so hard. I feel so alone. I just keep thinking about killing myself. I can't do anything normal or fun anymore. Nobody understands. I'm miserable.

If anyone knows a good pulsatile tinnitus doctor in DFW please tell me...

 

Hello. We all relate to now feeling like an alien in our own world. The suicidal thoughts are normal really. People on here give good advice to see a therapist while going through this.

I don't live in that area and cannot recommend anything there but I can say to you, it may seem little now, but you are not alone. We all suffer our different cases but we understand what we are going through. I send you love, understanding and strength! I hope others with your exact condition will reply here and give you comfort and advice.

Keep us posted and keep checking in!

 

Regarding the pulsating part, have you taken your blood pressure? I have pulsating and my blood pressure was quite high 150 up/110 down. I now take heart pills 5 mg a day. The pulsating part has calmed down for me, it's still there but not like before, also it's only been 10 days since I started the heart pills.

I still have my electrical tinnitus in my brain and an eee tinnitus in both ears, or mostly right ear for certain hours of the day in varied volume, but the fact that the pulsating is not as active makes me appreciate what I have right now.

 

I'm really glad the pills helped you out! Oddly my resting HR is 57 bpm according to my Fitbit. My blood pressure and heart rate are usually low-normal, except my diastole, which is slightly high (around 85), while my systole is usually around 95-110. I'm not sure if lower blood pressure can cause pulsatile issues, but I've also had it for years without pulsatile tinnitus so I doubt it in my case.

I sometimes wonder if my pulsatile tinnitus is stress-induced, but not sure if stress alone can cause 24/7 noise for 3+ months.