Please Help Me Figure This Out; Feeling Overwhelmed

I apologize for the length of this but I'm hoping with enough information someone can help me out at I'm feeling very hopeless at the moment.

I originally got tinnitus in my right year in July 2017. Initially it was so quiet I really only noticed it at night so I didn’t actually see a doctor about it until September 2017 where I was diagnosed with extremely mild high frequency hearing loss. The ENT said there was nothing to be done and it was likely caused by allergies so I started taking Zyrtec every day and was on that until April of this year. I've since learned I don't even have allergies so I stopped taking the Zyrtec.

For a year and a half I never had a problem with my tinnitus even though I could sometimes hear it during the day because mine never changed no matter what I ate or what medication I took. I never even looked it up online! Until...

In April of this year I was exposed to some toxic chemicals at work, and to make a long story short, I haven’t felt well since. Not only has my tinnitus increased in volume, pitch, and annoyance, it is also now reactive to the noise around it and both ears fluctuate between feeling itchy and full on an hourly basis. If I lay on my right ear at night it feels blocked for about a half hour after I wake up. If I lay on the left ear I hear tones that were not there before. This freaked me out but I’ve had two hearing tests (late April and early July) that show no hearing loss in the left ear and the same exact loss in the right ear so there’s no reason for all these sensations I've been feeling unless they're literally being caused by anxiety like my ENT suggested.

My functional medical doctor is treating me for reactivated Epstein-Barr virus (likely caused by stress) and in addition to being on a gluten and diary free diet, I am on multiple supplements (probiotic, lysine, vitamin c&d, monolaurin). My concern is that these ear issues have continued for months without any improvement. What, if anything, can I do to make things better? When I yawn my ears crackle but an ENT checked my eustachian tubes and they do not look inflamed. I’m getting a night guard for teeth clenching this afternoon, but could all this be caused by that alone?

I know stress and anxiety is probably making everything worse but it’s really hard to not feel stressed and anxious when you’re sick and you have trouble sleeping or even getting through the day due to the ringing. I have done my best using natural supplements like magnesium and melatonin so I can sleep at night but I’m starting to feel desperate enough that I’m considering Remeron. I’m not the type of person who wants to take antidepressants and have resisted doing so my entire life. I was taking a super low-dose Xanax (.25mg) but only as needed (once a week at most) and I stopped that two months ago when I learned how ototoxic it is. In fact, I’m afraid of all drugs now because my ears are constantly bothering me and I don't want to make matters worse.

Also, I have extremely tight muscles in my shoulders and neck but any attempt to loosen them up seems to actually aggravate my ear issues. I stopped physical therapy and acupuncture due to this. I feel completely backwards!

A neurologist I saw felt that a course of methylprednisolone would help with what she felt were migraines (I have pains in my head while sleeping as if the weight of my head is crushing itself) and it did actually quiet the tinnitus but only until it was completely out of my system. So I got about two weeks of my old tinnitus back. That leads me to believe inflammation is involved but apparently between my diet and supplements (which I've been on for two months now) that should be addressed and it doesn’t seem to be making a difference.

I've lost so much weight since April and barely have an appetite. I've lost all desire to do the things I used to love and don't even feel like the same person I used to be. I've thought about suicide far too often which naturally upsets my loved ones, but I don't know how to keep going and keep waiting for things to get better when I've had only a handful of ok days in months. I'm constantly worried my ears are being attacked by this damn virus and I don't know how to cope. I end up having a nervous breakdown about every other day over how much my health has declined in just five months. It feels like I’m never going to feel well again.

I only hope someone reading this has some ideas that can help me because I really need it. I tried lemon bioflavonoids recently but they give me headaches and slow down my heart so I had to stop.

 

@nicole76

The fact that it hasn't improved in over 3 months isn't a good sign. But not all hope is lost. First of all, there is still a chance that it will begin fading. Second of all, new treatments for tinnitus are in the process of being rolled out:

Check out
https://www.tinnitustalk.com/search/3412494/?q=lenire&o=relevance

Finally, many tinnitus sufferers report being habituated 1.5-2 years after the onset. They are no longer bothered by their T, or it bothers them a lot less compared to how it felt at the beginning. For an example, see
https://www.tinnitustalk.com/threads/i-dont-need-a-fan-anymore-—-tinnitus-does-get-easier.36434/

The first 3-6 months are the worst, so I hope you won't do anything irreversible based on those experiences.

 

@nicole76

You are still looking for the root cause of the T. It is very likely that whatever it was, it is long gone, and now there is only the dealing with the T problem. Are you hearing thresholds the same as before the worsening? In many cases, the culprit is additional hearing loss. I had a period that I thought my T was caused by some microbial overgrowth, and I was following like you all sort of supplements and diets to help detoxifying. Telling the story short, it took me nowhere and only increased unhappiness and frustration. I was also very apprehensive about ototoxicity, and again, that lead me to be very careful or reject medication that I needed given my crumbling emotional state and lack of sleep.
There is very little that can be done about troubleshooting the T, and after the due diligence the first few months, it is better to figure how to manage the T, instead of the T managing you. Indeed, that is very complicated and looks impossible when one is deep in the hole. My recommendation is trying to stay calm, resume simple activities, check whether yoga, relaxation or meditation can help you. Maybe meds needed to go through really hard times.

 

I appreciate the responses, but it feels like maybe I wasn't clear enough - I've had tinnitus for two years now. It's only since April it's been an issue. I was already habituated before the change in how it's been acting. I'm merely trying to piece together the reason for the dramatic change in how my ears feel and react so I can address it and reclaim my life.

Since my hearing thresholds haven't changed AT ALL from the onset in 2017 until my most recent audiogram in July of this year it cannot be additional hearing loss. That's why I'm speculating whether it's related to TMJ, EBV, or just good old anxiety/stress since I've never felt worse in my life (tinnitus excluded).

I think it would be helpful to know the root cause in order to address it before it gets any worse. For instance, I just got back from the grocery store where everything seemed kinda muffled but also too loud and overwhelming at the same time. How is this possible?

Now I'm at home and the T is louder because it's aggravated. Is the issue physical (from my tight muscles or jaw or the Epstein Barr virus itself attacking my ears or brain), mental (like my brain has been damaged by the toxic fumes I was subjected to or the EB virus), or psychological (from all the stress and my obsession with this affliction)? Knowing would help me be able to accept and deal with the issue better.

 

The reason seems to be:

Many chemicals are ototoxic = can harm the ear. Check out
http://hlaa-sbc.org/wp-content/uploads/2013/11/Ototoxic_Brochure.pdf
but of course the above list isn't a complete list of all of the chemical compounds that are ototoxic...

 

One sign of an ear isn't well is "ear fullness" = "muffled hearing" and hyperacusis = regular sounds sounding too loud.

Ears take forever to heal (as in years). One thing that you can try doing is protecting your ears from all of the noises that don't feel right. I am talking about the moderate noises like that of a vacuum cleaner and hair dryer. This method can promote healing in those of us who got tinnitus, ear fullness, and hyperacusis as a result of an acoustic trauma. Who knows, it might help someone whose ears were hurt by ototoxic chemicals.

Check out
https://www.tinnitustalk.com/thread...eone-else-who-has-tinnitus.26850/#post-307822

 

@nicole76 -- Your description(s) would seem to indicate somatic tinnitus. Fortunately, various kinds of therapies can often help that. At least part of my tinnitus is somatic, and I recently ran across an exercise that's been working really well for me, and "may" be softening my tinnitus. Here's a link to a 5-min. video: -- The Simplest and Most Effective Exercise For Thoracic Extension

I think the above technique is almost a must for anybody who sits a lot, which puts a lot of tension on the upper back and neck areas. Which of course can extend down into the shoulders, TMJ, and on and on. I'm just a big believer in doing any kind of home self-help that will keep the whole uppper back and neck areas as nimble as possible, as it all can have an outsized influence on tinnitus loudness and/or intensity. -- The technique described in this 5-Min. video has helped my neck a lot as well: -- Natural Pelvis Reset

If you're interested, I could share a bit about some of the self-acupuncture I've been doing that has also helped my neck a lot. -- All the Best...
...................................

Have you done anything to try to detoxify your body of those chemicals?

 

Yea, that's something I didn't do when I first got T, but back then it didn't occur to me it could get worse and it never did. Now I do use ear protection for the vacuum, and go into a different room when my husband uses any loud kitchen appliances (or does the vacuuming). I don't wear any protection outside of the house because I need my ears to not fear regular sounds. I do have earplugs in my purse just in case though. Oh and since I'm on this diet I don't eat out so I don't need to worry about loud restaurants and I've stopped going to the movies for the time being. I've felt too sick to enjoy the experience anyway.

 

What's weird is none of my coworkers seemed affected by the chemicals. Everyone could smell them and were breathing them in over the course of three months, yet I'm the only one who got ill. I had to quit when my employer refused to do the work elsewhere (they were stripping and re staining office doors in an unventilated room above our office area). I tried working with them as I got sicker but they did nothing to help me. Honestly I feel like they ruined my life.

 

Thanks for the info. I will check the videos out. I would be interested in the self acupuncture too if you want to message me.

How does one detoxify? It was wood stripper and stain I was breathing in which caused a sinus infection and headaches. Those are now gone but the stress of the situation caused epstein barr to reactivate so I'm treating that.

 

There's something wrong but no one can seem to help me!

Over the course of a few months the once quiet and stable non-reactive tinnitus in my right ear has not only gotten louder, but has picked up new tones.

Around the same time I started having these head pains (not headaches) while trying to sleep. I'd wake up and it felt like my head was being crushed and I noticed I was clenching my teeth. Which came first - the pain or the clenching - I'm unsure. But I got a custom night guard from the dentist. Didn't help. In fact it seemed to aggravate the very low tinnitus in my left ear that I usually only hear with my head against a pillow.

I saw a neurologist who said migraine and had me take steroids. Lowered the T for a few weeks but didn't help with the pain.

Saw a different neurologist and he said fibromyalgia and sent me to a pain doctor where I received trigger point injections in my scm muscles and shoulders since everything in both were extremely tight and supposedly causing the pains in my head. That was four days ago but the time released steroid has yet to kick in.

In the meantime I was prescribed flexeril which only helped me sleep once and introduced a new tone I call water in the pipes which during the day sounds distant like it's coming from an appliance even though it's my right ear reacting to the droning and adding an additional tone to it. That was over a week ago and now it reacts to water, fans, and the microwave. I requested to try Soma instead since I read it isn't ototoxic but that increased the sound of that tone after just one dose! The only thing that doesn't seem to make things worse is Xanax which I have held out taking for months. I've only taken it twice so far because I don't want to build up a tolerance and I only take .25 mg.

Also in the meantime my left ear has developed hyperacusis which fluctuates in intensity daily and a few days ago the inside of that ear started spasming in response to the noises it doesn't like which tend to be the same low tones the tinnitus in my right ear reacts to. Now the right ear is randomly fluttering too!

To sleep I usually have crickets on a speaker and then listen to a show on my iPad to focus on instead of the T but last night my left ear wasn't liking certain sounds in the show which has never happened before so I had to turn it off. Then when I was lying on my right side my ear starting fluttering like crazy and the water in pipes sound grew louder and was less distant. Now it's like a hospital flat line sound!!! When I yawn the sound temporarily grows louder and it's scary.

My husband, while very supportive, cannot understand why I'm having daily crying fits over all this. He's convinced this is all being caused by my tight muscles and will resolve, or at least get better, once they are relaxed and once I calm down. I want to believe that but it's really hard when things keep getting progressively worse! How am I supposed to remain calm when I'm being tortured by my own body? I have fluctuating fullness and itchiness in both ears as well and ENTS tell me it's anxiety!

I keep having suicidal thoughts because between all the noises, pain, and now ear fluttering discomfort, I don't feel like a person anymore. I certainly don't feel like I have a life worth living. It's so hard getting through each day like this when anything I try to do to improve my situation backfires. I can't even get adequate rest because of all the pain I'm in. Doctor gave me tramadol but after my bad experiences with other drugs I'm too scared to take it.

I feel like my ears are being attacked by something but I'm not sure what to do about it. I desperately want to live and get my life back. Right now I'm living a nightmare.

Does anyone have any thoughts?!?

 

I don’t have much assistance other than the fluttering sounds like tonic tensor tympani syndrome.

I can sympathize with medication issues. Anything with serotonin causes me to spike horribly.

I took sodium diclofenac for really bad leg and back pain and it did the same.

Strangely, I take clonazepam and I swear between two different generics it affects the multiplicity of tones I hear or at least how I perceive them. Though thankfully it reduces the volume.

 

Do you have muffled hearing? Are words hard for you to understand?

 

Nope. My hearing isn't muffled and I can understand speech just fine as well.

 

Have you checked for TMJ? I know you said you have a bright guard, my tinnitus gets louder when I yawn or burp... could be muscle tension?

 

My niece just suggested that today after I told her my symptoms. I have a ton of tension in my body but mostly my head so I'm guessing it's contributing.

 

Months ago, I had ear spasms and clicking, it was so awful. I can't express how bad. It did go away although I still have clicking sometimes. I now mostly have ear pain and loud tinnitus.

I think doctors don't know what to do so they just try things. I am somewhat inclined to say at least your doctor is willing to prescribe things even if he/she doesn't know how to treat it.

My GP is conservative and won't prescribe prednisone.

Make sure to drink plenty of water and eat regularly. I get migraines sometimes and although I do blame many of my current health issues on tinnitus either directly or indirectly, I think insufficient water can lead to headaches. It's worth trying or making sure you are hydrated.

I am not sure about the tinnitus worsening. I think most of the time, it's because of a loud noise that we can no longer tolerate (our ears) but some people are convinced it's ototoxic drugs and medications. I don't object to those theories since ENTs and doctors can't answer these questions either.

Sometimes worsening tinnitus or spikes subside or are part of fluctuating tinnitus so don't assume that this is the new normal yet. I know how it is when tinnitus worsens though. I am sorry you are going through this.

 

Thank you for the kind words. It just seems it keeps intensifying every day and I feel powerless to stop it. The reactive piece is the hardest to deal with since it makes it impossible to mask. I keep telling myself this isn't permanent in the hopes I'm right and it will get better at some point.