Hi all,
Since people seem to find this thread useful, and there isn't a lot of information on tinnitus, I wanted to give my seven month update.
For some background:
My tinnitus onset was September 19, 2022 following a two day music festival a month after suffering tinnitus for two weeks after an EDM festival (three days) and not knowing what it was.
The two week episode self-resolved with no issue; and I didn't know it was anything serious (most people said it was "normal") so I did not realize I was at risk for anything.
After the two day music festival I went to a month later, I had very loud ringing that made it impossible to sleep along with aural fullness, muted hearing and some pain.
It was bad. I did two rounds of Prednisone, and if you scroll back through these posts you can find the exact dosages I was given. I did find the Prednisone helpful but unfortunately the ringing has persisted. The aural fullness, pain, and muted hearing all resolved luckily (I would say within 1-2 months). I do not and did not have hyperacusis.
And since a lot of people ask, I will note here that I've never used in ear headphones in my life (just didn't like the sensation of them) and have very rarely used over-ear headphones (occasionally for music when I was very young and a little bit for work). I generally listen to music using speakers and have phone conversations with speakers even pre-tinnitus. I also never really listened to my music or TV at loud levels pre-tinnitus, and I had never experienced any ear ringing for my entire life until the first incident at the EDM festival at 30 despite going to many live music events almost weekly since my mid 20s.
Seven Month Update
---Sleep---
I am able to sleep, even on my side, despite still having the ringing. I am sleeping 7-8 hours uninterrupted once again. This has been a major improvement for my health.
What worked for me:
- 1mg Melatonin (I use two 0.5 mg children's capsules and hope to taper off this eventually)
- 400 mg Magnesium Glycinate
I take these about an hour before bed every night. Sometimes I really dope myself up with an additional sleepy time tea (valerian root). It's not ideal but sleep is extremely important so it's worth it.
I try to go to bed within the same time frame every night (10 pm-11 pm) and wake up same time (7:30 am-8:30 am).
I've also completely quit coffee the past seven months and feel that my energy levels and mood are much more stable throughout the day than they were while I drank coffee. I don't intend to ever drink caffeine again aside of the occasional caffeinated tea.
I also don't keep my phone in the bedroom and am generally trying to not use it at all during the day aside of phone calls or checking texts a few times a day... bad for your dopamine levels.
Having a normal sleep schedule has been a huge accomplishment for me. I'm sure many of you can emphasize with how much this condition screws with your sleep. I was running on zombie mood the first 2-3 months.
---Diet---
I still am eating a pretty clean diet. High vegetable and protein, low inflammation, almost 90% cooked by me. Good for the wallet and the body.
I do have some sugar here and there - been snacking on a large chocolate bar from Easter but I try to keep it very occasional since sugar really isn't great for you anyway.
---Alcohol---
I have started occasionally consuming alcohol again. On about 6 occasions in the past 3 months I've had some alcohol, mostly a drink with dinner here and there.
When I have a drink with dinner, I notice no significant change to my tinnitus level.
On the two occasions I did drink more heavily, I noted my tinnitus became much louder like it was immediately after I first attended the EDM festival.
On these occasions I had something like two martinis, and once was while seeing some live music for two hours which I'm sure did not help.
I'm lucky it resolved next day both times. Based on this, and the fact alcohol isn't great for you anyway, I plan to keep the alcohol consumption very occasional and low (1-2 drinks).
Alcohol isn't great for you anyway, is inflammatory, and consistent use can inhibit your body from absorbing nutrients.
---Supplements---
I'll have to be very frank here and say my supplement use has been very inconsistent as of late aside of NAC, Vitamin D and CoQ10 (and Magnesium at night).
I've revamped my supplement schedule and intend to start taking them consistently. For the past week I've been taking:
- 100 mg CoQ10
- 600 mg NAC (but 1200 if I've been exposed to loud noise that day)
- 125 mcg (5,000 IU) Vitamin D3 (I found a brand called naturewise that does not use soybean oil in the soft gels, instead they use olive oil.)
- B-Complex Vitamin with C (Includes: 150mcg Vitamin C, 100mg Thiamin, 20mg Riboflavin, 25mg Niacin, 2mg Vitamin B6, 656mcg Folate, 15mcg Vitamin B12, 30mcg Biotin, 5.5mg Pantothenic Acid, 35mg Calcium.) I was originally only taking a B12 supplement but have decided to swap to the B Vitamin complex since (to my understanding) there are multiple B vitamins involved in nervous system health.
- 180 mg (400 IU) Vitamin E
Everything I'm taking is revolved around nervous system health, calming the nervous system, and boosting immune system. Whether or not it does anything... I can only say from my anecdotal experience it has not made anything worse.
I do not have any daily medications I take so I cannot say how any of this may interact with other meds. Do your own research and speak with a doctor before you try anything, as I am not one.
***If you have any suggestions on other supplements to try or knowledge about these or other ones, please let me know!***
---Noise Exposure---
This has been a giant life change for me. I have barely gone anywhere loud since my tinnitus onset.
I have exposed myself to live music three times since the event, 2 out of the 3 with earplugs. Once without earplugs. All times for no longer than two hours. All times with some alcohol in my system.
What I can say about this - it does immediately raise my tinnitus levels if I do it without the ear plugs and I do not like it.
With the earplugs, I do not seem to get a spike but I also do not enjoy wearing the earplugs.
Live music and loud things continue to not be worth the risk for me despite the fact I love dancing and music.
It's unfortunate but what are you gonna do.
That being said, I still listen to music and TV at home and in my car.
In my car never over 14-17 on the volume thing.
And I keep my TV and music relatively low.
I still play guitar. Playing guitar does not spike my tinnitus. I play acoustic though.
From what I read, I do think noise exposure is important to prevent hyperacusis but you need to keep the volumes low/comfortable.
---Noise Exposure on Flights---
About four months after onset I took two very long international flights.
I sat in economy on both flights (24 hour long flights).
Here is what I found - sitting in the middle ish to front part of economy did not give me a noise exposure spike.
Sitting at the back of the flight for the way home gave me a very loud noise exposure spike that completely freaked me out, even with ear plugs.
I will be paying extra to pick my seat for the time being.
The spike did resolve.
---Silence---
I haven't heard it in a while. When I say silence I mean spending time in solitude with the only noise present being that which ceaselessly rings in my head.
Yes, it is miserable to not hear silence.
But I can say that I am now able to read, think, write, etc with the same amount of clarity I did pre-tinnitus. Sometimes I even manage to take a nap with no fan on.
The ringing is lighter than it initially was and I hope it continues to get fainter.
I'm sure this is also partially due to my mind habituating albeit at a slow rate.
There's mixed opinions on whether or not people with tinnitus should spend time "hearing" their tinnitus if they hope to stop hearing it. I don't think it has a major affect either way and personally just cannot tolerate listening to fake forest noises or music all day. I do like to hear the closest thing I can get to silence, so I do spend time with my ringing.
It hasn't made it worse and I do not think it's prevented any improvement.
---Mental Health---
I was perfectly happy and not suicidal pre-tinnitus.
I was the most suicidal I have ever been in my life immediately after the tinnitus.
I seriously did not know if I could handle living with the tinnitus. I called the suicide hotline often the first 3 months and they reached back out with wellness check calls.
Do not be afraid to call the suicide hotline if you need to. They are there for you to vent at 4am when you haven't slept in 78hours due to incessant ringing that would be considered a war time torture tactic going on nonstop in your head.
It did get better. I can't really say what did allow me to get better but I went from suicidal to depressed to annoyed and fearful.
That is where I'm at now mentally. I am annoyed by it and fearful of it getting worse but it is no longer controlling my entire life.
Hopefully it fully resolves...but I did want to let the people that may be lurking here and suffering with suicidal thoughts know it is possible to get past the suicidal ideation.
I would suggest these three things:
- Use your life lines. Cry to that random person on the suicide hotline at 4am when you know it's way too late at night to wake up your friends or family with jobs for the ninth time because your ears won't stop ringing.
- Fix your sleep schedule. Do whatever you can to get things sorted out so your getting 7-8 hours and not waking up at odd times and sleeping the day away from pure exhaustion after.
- Make yourself a schedule with daily goals and promise yourself to do at least one of them every day. If you do more, great but at least do one. Even if the goal is something like "shower" or "wear a nice outfit" or "take a walk". It helps trust me.
While tinnitus does not control my entire life it, I do feel the need to be honest and say of course it unfortunately does still control some parts of it - and it may always control these parts of my life.
What it controls:
Where I can sit on a plane, how much alcohol I can drink, what kind of noise and how long I can be exposed to noise if at all, how I sleep (I need a fan and sleep focused supplements)
And I absolutely f*king hate it for that. I really do. Especially the sleeping part.
But I would say this is normal and healthy for the situation, and helps me stay motivated to continue protecting my auditory health and hopefully improving it.
So don't be worried about having negative emotions about it. Use it as fuel for improvement. It does get better. And perhaps it completely goes away.
---Conclusion---
At 7 months I still have ringing. It is mostly only in quiet places like my apartment and very loud in rooms like my bathroom. I do live next to a main road but the noise of cars on the road does not seem to totally drone it out. I don't seem to hear it when I'm outside unless I have drank heavily or been exposed to loud noise.
I'll let you guys know how things continue to develop.
All the best.
Member
