Care to Interpret My Case?

[ChiGuy]

Hi all. First post here. Like others, I have lurked around this forum for a while. Firstly, I would like to say that I pray for each and every one of you. I know what you are going through. I truly believe there is a cure for all diseases and sicknesses. It's just a matter of time for hearing loss and tinnitus. I am a 41 year old male, married with 3 children. I live outside of Chicago. Leaving emotion out, I wanted to present an outline of my case. In a perfect world, doctors from different disciplines would read my case and attempt to come to some sort of conclusion. Unfortunately, the medical system does not work like this. Doctors of different disciplines work in silos. If there is any reference to anxiety in your medical files, YOU ARE TOAST! Doctors will attribute everything to anxiety and will not dig deeper. Please see my case below and thanks for your time.

- 7 month prior - My wife and I bought a fixer upper house. This was the beginning of EXTREME STRESS!!! I was freaking out over every little thing that was wrong with the house. Managing this project with all the contractors really took a toll on me.
- 5 months prior - I believe that the house renovation stressed me out to the point I started exhibiting physical symptoms. On my left side I started to get chest, side, and back pain.
- 2 months prior - Went to primary doctor regarding my symptoms. Blood work good (aside for vitamin D low and report indicated that I should watch my cholesterol). Chest X-Ray good. Lyme disease test negative. EKG good. 1 week later I went in for a stress test and results were good. 1 week after that I went in for an upper endoscopy since I had a history of Eosinophilic Esophagitis (EoE) and stricture. Endoscopy was good... I was surprised when the doctor said that I did not have EoE or a stricture. I just had a small ring. He told me to take Prilosec every day and to follow up in a few months.
- 1 month prior - I was extremely stressed out and anxious googling my symptoms and poking around my body one night. I noticed a had bilateral ringing in my ears. It seemed to subside the next morning.
- 2 weeks prior - I got a cold sore
- 10 days prior - I went to a sports medicine doctor. I had some slight calcification on one of my ribs probably as a result of an injury the previous year. X-Ray was clean. I was told to do some stretches and was given Diclofenac Sodium (Voltaren) 1% topical to be applied to my chest 4 times per day.
- 3 days prior - Had a panic attack regarding my symptoms and went to the ER. They did a CT scan and it was clean. I felt a huge sense of relief.
- 2 days prior - Sprayed my lawn with weed killer (2,4D, Dicamba, and 90% inert ingredients). The sprayer did not dilute the formula correctly and the formula was way too strong. After about a 15 minute exposure, I had a burning in my throat and nose. I showered twice. Burning went away prior to me going to bed. No other symptoms.
- 1 day prior - I bought a yoga noodle and performed some stretches I found online. One the stretches involved laying on my back on the noodle, tucking in my chin tightly to my chest, and stretches my arms back.
- THE DAY - I woke up with a slight ringing in my right ear with the feeling there was something stuck in it. I used a Q-tip but it really didn't do much. This was the first day of 2 months of sleeplessness.
- the same week - Ringing got worse and started in the other ear also. My eustachian tubes and middle ears felt inflamed. I had a constant crackling sound when swallowing and sometimes talking. I went to an immediate care clinic thinking infection. Doctor said my ears were clean. He asked me about any events that may have occurred. I told him about weed killer and he mentioned ototoxicity. He said I should see an ENT.
- 10 days after - Went to ENT. Audiogram showed -30/35 db loss in left ear at 3K and 4K. Right ear was normal even with a -25 db drop at 8K. Other frequencies were good in both ears. I had 100% and 96% word recognition. I told him about the weed killer and Voltaren. He did not believe either was the culprit. He suggested a virus that could be blocking the nerve / blood supply to the ear. I was given a prescription for prednisone.
- during 12 days of prednisone - I felt like things were opening up. I am not sure if it was my actual hearing that was coming back or if the prednisone was having a positive impact on my eustachian tube. My heart raced during this period. Not sure if it was anxiety, the steriods, or both. Because of my mental state, my wife brought me to the ER. A basic blood test was done. I was given Valium and a list of psychiatrists. I was discharged. I was given a prescription for Zoloft which I started taking. I have always had a slight tremor, but during this period it got worse. I also developed myoclonic jerks on my hands, legs, neck, etc. I accidentally dropped my 2 last doses of prednisone down the drain. I called the doctor and he said it was ok. In all, I did 10 days of prednisone including the taper. To be honest, I felt pretty good. I stopped Zoloft and I felt like I had a handle on things. I started taking supplements such as NAC, vitamins C & E, magnesium, etc
- About 24 days after onset - 2 days after I stopped the prednisone and zoloft, the T got worse. It rang in both ears and I heard it in my head. Around this time I had an MRI with the inner ear canal. It came out clean.
- About 1 month after onset - I went to the ENT for a follow up audiogram. My hearing got worse in my right ear. At this point ears were almost symmetric in hearing loss (both with -30/35 db drop in 3K and 4K). Aside for the -25 db notch at 8K in my right ear, my ears were symmetric. I was told there was nothing more to do and I was asked to return in 3 months for another hearing test.
- Over the next 6 weeks - I went to 3 other ENTs during this period. In summary: ENT #1: "I never heard of weed killer causing this. Just ignore the ringing and enjoy life." I asked him about my eustachian tube symptoms and he said "the two are not connected". Not sure what he meant. ENT #2: take flownase and come back for ABR. Since I already had an MRI, I did not opt for ABR. ENT #3 (TOP EAR SPECIALIST IN CHICAGO AREA) : I brought my charts and a write up of my symptons. He starts off with "um, why are you even here?!?!?!!?". Looks in my ears. Looks at my charts. Since my mom had hearing loss he said it was hereditary. I asked him about the rapid onset, and he admitted it was a bit unusual for hereditary. He was in a hurry and tried making his great escape. I asked him about the weed killer. His response, "IMPOSSIBLE!!" He stated that there is a barrier between the middle and inner ear. I asked about chemical absorption into the oval / round window. He was not impressed with my theory. I asked about chemical absorption into the blood stream. He replied that the blood supply to the inner ears is as small as the head of a pen.... once again "IMPOSSIBLE". Off he went.
- Just under 3 months from onset - Got the green light from insurance for HBOT. I did 20 sessions at 2.5 ATA for 1.5 hours per day. After third session T dropped. The relief was only temporary. After treatment there was about a 10% decrease in my T.
- About 4.5 months after onset - I had wet cupping performed on me. Also, tested the water in my house. Came back clean.

Since my hearing loss was bilateral, fairly rapid, and my eustachian tubes have been impacted, I can't find anything on the internet that matches my symptoms. My tremors have decreased a bit but I still get muscle jerks. If anyone has experienced similar symptoms, please let me know.

I know most of you are not doctors, but I also know there are a lot of knowledgeable folks on this forum. With that being said, what is your interpretation of my case? Again, thanks for your time!

Possible causes:
Extreme stress
AutoImmune / Systematic
Prilosec
Cold sore / herpes
Diclofenac Sodium
Weed killer
Virus
Hereditary
Combination of the above

 

[Greg Sacramento]

@ChiGuy What does injury to your ribs detail? Did you also hurt your neck, spine, jaw or hit your head? Is your tinnitus high pitched which could relate to this injury even though it happened the year before.

 

[ChiGuy]

@Greg Sacramento Thanks for the reply. I injured my rib attempting to break some wood. I stepped on a piece with one foot, bent over, and pulled up on the other end of the piece. I felt a popping in my ribs. Hurt like hell but I recovered in a couple of weeks. I had no injury to my spine, neck, head, or jaw. My T is high pitched and bilateral.

On a side note, I wondering if there is something environmental going on with the new house??? Black mold, asbestos, etc?? I did a water test and it came out clean.

 

[PaulBe]

Doctors of different disciplines work in silos. If there is any reference to anxiety in your medical files, YOU ARE TOAST! Doctors will attribute everything to anxiety and will not dig deeper.

This is one of Medicine's few absolute truths. It also applies to any mention of tinnitus on your file. Any further investigation of symptoms (whatever they may be) stops in its tracks because you uttered the T word.

 

[Bobbie7]

Hi @ChiGuy -

Welcome to the forum and I am sorry to read that you are experiencing all these troubling and mysterious symptoms and unable to be getting to the bottom of it. I gather you and your wife are presently living in the house, am I correct? If so, then is your wife exhibiting any of the same symptoms you are? So, if you were living in the house, you didn't begin to experience these symptoms until 5 months after you moved on so it may be coincidental or not.

You made mention of your having tremors... for how long have you had these if I may ask? While I am certainly no medical sleuth, I am just curious as whether you have visited a neurologist.

 

[Bill Bauer]

My guess is weed killer caused your T. Hopefully now that you are no longer exposed to it, T will eventually begin to fade. Keep in mind that ears take forever to heal. It might take 6-24 months for it to disappear (or to at least fade and become easier to ignore). Make sure you use sound enrichment at night to give you something else to listen to, besides your T.

Tinnitus is often not a permanent condition. Check out all of the studies in the thread below:
https://www.tinnitustalk.com/threads/spontaneous-recovery-stats-over-70-recover-3-studies.21441/

 

[PaulBe]

It does sound a bit like some kind of poisoning or contamination/exposure.

 

[Greg Sacramento]

Chemicals are known to cause hearing loss which also includes tinnitus. One thing that's often not discussed is the combination of chemicals when there's also a noise factor. Moving the body around or bending neck in presence of noise can cause tinnitus such as moving your head around at a concert, jack hammering or using a hammer with a tilted head. http://www.hear-it.org/chemicals-and-noise-a-dangerous-cocktail

 

[ChiGuy]

@Bobbie7 Thanks for the reply. Yes, we are still living in the same house. No one else in the family is exhibiting symptoms. I have yet to see a neurologist. Unfortunately, since I have anxiety, doctors seems to thing that is the cause of all of my issues.

@Bill Bauer @PaulBe @Greg Sacramento Thanks for chiming in. I had convinced myself that the weed killer was the cause of my hearing loss. Although there are numerous studies that suggest that acute pesticides / herbicides can cause hearing loss in a one time exposure, I have only found 2 documented cases online. One from 1978 and one dealing with a 53 year old woman. Neither of these cases resemble mine. One had severe bilateral deafness and the other had a flat bilateral hearing. My loss is at 3K and 4K. Additionally, my hearing dipped again 2 to 4 weeks after the event.... long after the exposure. So my concern is that this may be something more systematic or autoimmune.

Any thoughts?

 

[Tinker Bell]

You mentioned that you had ringing prior to using the herbicide, so I doubt that would be the cause. Consider the number of people who work with herbicides on a nearly daily basis. If it caused hearing loss, there would be many cases.

Have you seen a neurologist? I have autoimmune concerns and my neurologist suggested much of the blood work and tests I took. He also referred me to the right specialists for additional tests.

I wish you good luck and good health. I know how stressful health problems can be. If you don't have one already, I also recommend a CBT therapist. Mine has been great helping me cope with my health concerns.

 

[Greg Sacramento]

@ChiGuy I too doubt if it was the chemicals and probably not the medications.

Your mention in: I day prior about your yoga. Did that reflect stress to chin, jaw and neck? You also mention: constant cracking sound when swallowing and sometimes talking. That's somatic in nature. Temporomanibular joint - jaw misalignment, stressed or painful jaw, gums, grinding teeth.

If you are having constant cracking sounds when swallowing then I would focus there first. Have you had any dental trauma? Any head, neck or jaw trauma? Does your neck hurt? Somatic tinnitus is every thing mentioned above and your cracking sounds when swallowing and talking is somatic and probably related to the cause.

Review this board: somatic tinnitus. Then place in your search somatic tinnitus, then somatic tinnitus causes.
Then search treatment. Exercises - Spend some time researching this and be careful with any of the exercises. Research modulation of somatic tinnitus. See if you can modulate the pitch by moving anything above the shoulders in a careful manner.

 

[ChiGuy]

@Tinker Bell Thanks for your input. I think a neurologist is my next step. I feel uncomfortable with the fact that my sudden / progressive hearing loss is bilateral which is very rare. From what I have read, these scenarios are generally autoimmune or toxicity related. My doctors don't seem too concerned which is a bit disappointing.

I noticed that your cause is SSHL. I really sympathize with you. I read one of your posts and you had mentioned that you have children. I have 3 children ranging from 3 to 10. Given my condition, we did not do all of the fun activities we usually do in the summer. That's what hurts the most. Once a day passes, you will never get it back. Today, I'm taking my wife and kids to a carnival and we are all going to have fun today!!!!

 

[PaulBe]

From what I have read, these scenarios are generally autoimmune or toxicity related. My doctors don't seem too concerned which is a bit disappointing.

That is true about autoimmunity and/or toxicity. If a particular cell/tissue type is targeted it will be wherever that tissue occurs, making it more likely to be bilateral. People who have suffered direct ototoxic impacts ( @Telis comes to mind) may be able to tell you more.

Some neurological conditions can take a long time to diagnose. Finding the right Doctor is usually the key, but the process of doing that makes you a "doctor shopper" which puts their guard up, so you are damned if you do and damned if you don't.

 

[Tinker Bell]

@Tinker BellI noticed that your cause is SSHL. I really sympathize with you. I read one of your posts and you had mentioned that you have children. I have 3 children ranging from 3 to 10. Given my condition, we did not do all of the fun activities we usually do in the summer. That's what hurts the most. Once a day passes, you will never get it back. Today, I'm taking my wife and kids to a carnival and we are all going to have fun today!!!!

I hope you had a great time at the carnival! I absolutely sympathize with missing out on usual summer fun. We skipped a few things this year, but I tried to focus on the positives and the good memories we were able to make together.

 

[Sonic17]

@ChiGuy
Welcome to the forum, sorry to hear about your struggles with T. I read through your post and wish I had some answers for you. I feel similar to you in the sense that I also have bilateral Tinnitus of unknown origin that came on suddenly, I have mild bilateral hearing loss in the mid frequencies which the audiologist and ENT do not think is severe enough to cause Tinnitus. My hearing loss does not interfere with my daily living at all and the ENT stated it is likely genetic and that I was probably born with the loss.

One the stretches involved laying on my back on the noodle, tucking in my chin tightly to my chest, and stretches my arms back.

I herniated a disc in my lower neck about 2 weeks prior to the onset to my Tinnitus. Do you think you may have suffered a neck injury from the yoga positions you were doing the evening before your T started?
My neurosurgeon does not think there is a connection between my Tinnitus and my neck injury, but I think he could be wrong and that there is a possibility the T was caused by the disc injury….or my very anxious state when I found out that I had herniated a disc.
Could your tremors be stress related? Some medications also cause hand/arm tremors.

My tremors have decreased a bit but I still get muscle jerks.

I was so stressed/anxious when I found out I herniated my disc that I had leg and arm spasms. These subsided after a week or so once I relaxed more and I could see my back was improving. The spasms were not from the disc injury but from my anxiety I had created over it.

Unfortunately, since I have anxiety, doctors seems to thing that is the cause of all of my issues.

Yes, I agree. I have experienced this myself

I hope that your T resolves for you. In the mean time I am sure you will find this forum as helpful as many of us have. There are many knowledgeable and kind members with good information and coping strategies to pass along. Take care.

 

[Jkph75]

Can you post your audiograms?

 

[Greg Sacramento]

It's all can relate. The lower back, the neck, the jaw, and all the joints and muscles above the waist including the mouth and jaw. There's many professional articles that relate this to hearing, hyperacusis and tinnitus.

[Check attachment]

It states - "Our results corroborate the clinical significance of manual therapeutic findings as part of the diagnostic workup for tinnitus. They show that an uniform and standardized examination protocol is needed, and that appropriate measure should be incorporated into the interdisciplinary therapeutic management of patients with tinnitus."

@Steve @Markku I think that this would be very helpful for those with all types of tinnitus, including those that have a somatic nature in cause. Many with tinnitus hearing loss from noise - those non somatic also have hearing loss that can be connected to body posture.

I think that many of us who have somatic tinnitus have figured out the causes. The problem is would any treatment or PT help. I don't think that we here can come up with a 'fit all' protocol.

 

[ChiGuy]

@Greg Sacramento You have passed on a ton of valuable information. I really appreciate it. I don't have a cracking sound. It is more like a crackling sound. Like my eustachian tubs are sticky. Given the hearing loss and the sticky tubes occurred at the same time, I don't believe the issue being somatic / spine. But who knows... I'm not an expert. I have to explore all options. Thanks again.

@PaulBe I completely agree with your doctor comments. As you can tell from my previous comments, I am really disappointed in the American medical system especially when it comes to hearing loss / tinnitus. I'll start another thread with some of my opinions regarding this.

@Tinker Bell My family and I really enjoyed the carnival. It was back in the old neighborhood. I saw an old friend of mine. He is 43 and could barely walk. I didn't ask about his condition. It put thinks into perspective... we all have our own struggles.

@Sonic17 Thanks for the well wishes and encouragement. I'm sorry to hear about your situation. Do you know which frequencies and decibels your hearing loss is it? Is it symmetric? Did your doctor prescribe prednisone? Do you have any issues with your middle ear / eustachian tubes?

@Jkph75 I will try to post my audio test result as soon as possible

Sometimes I feel like my hearing loss is stress related. I was diagnosed with pre-hypertension while remodeling the new house. The thought is that stress / high blood pressure reduced the blood flow to my inner ears. I have the following problem with this theory. Blood flow to the inner ears reach the higher frequencies first than the low. With that being said, I would expect my hearing loss to be in the low frequencies or all frequencies (flat pattern on hearing test). I'm wondering if stress can have a toxic effect on the bloodstream? Anyone know? If yes, maybe my hearing loss is not as a result of lack of blood flow, but instead as a result of changes in the blood because of stress. I'm sorry for the rambling..... just looking for some answers.

 

[PaulBe]

In stress there is a greater tendency for blood to clot (part of fight-fright etc). One ENT speculated to me (as I was walking out his door) that I may have had a stroke because my cholesterol was high and there is only one artery feeding the hearing apparatus. My problem is unilateral so he may have been on to something, but as to any follow-up? Nah. Just left me to consider the possibilities (meaning it could happen again, with even worse results...thank you Doctor).

 

[Tinker Bell]

In stress there is a greater tendency for blood to clot (part of fight-fright etc). One ENT speculated to me (as I was walking out his door) that I may have had a stroke because my cholesterol was high and there is only one artery feeding the hearing apparatus. My problem is unilateral so he may have been on to something, but as to any follow-up? Nah. Just left me to consider the possibilities (meaning it could happen again, with even worse results...thank you Doctor).

Can you request an MRA/MRV? My hearing loss is unilateral and I also had unilateral blindness on the exact same side a couple years ago. My doctors were concerned about a possible stroke, so I was referred to a neurologist who specialized in treating stroke patients.

 

[Sonic17]

My doctors were concerned about a possible stroke, so I was referred to a neurologist who specialized in treating stroke patients

@Tinker Bell
Have you seen the neurologist? Did they diagnose you with having had a stroke?

 

[Sonic17]

Do you know which frequencies and decibels your hearing loss is it? Is it symmetric? Did your doctor prescribe prednisone? Do you have any issues with your middle ear / eustachian tubes?

Hmmm, I was told I have a bilateral mid frequency loss and it is very mild. I hear the T in both ears...but truly it feels like it originates in the lower back part of my head. Sounds strange, but my T sounds similar to being on an airplane. I was never prescribed prednisone, but I noticed that quite a few people on this forum have been prescribed it with varying results. I have never had problems with my middle ear or Eustachian tubes that I know of......I have never even had an ear infection in my life. I will be seeing a new ENT at the end of the month, I am hoping he will look in my ears and find something wrong that he could cure.....but I am not holding my breath!

 

[Sonic17]

Nah. Just left me to consider the possibilities (meaning it could happen again, with even worse results...thank you Doctor).

I had a similar experience, the ENT told me maybe I twisted a blood vessel or broke one, but I was never given any follow up on this either.

 

[Tinker Bell]

@Tinker Bell
Have you seen the neurologist? Did they diagnose you with having had a stroke?

I did see the neurologist, sorry I should have included that! He was great, very thorough. Had an MRA/MRV, a CT scan and a lot of blood work. No evidence of a stroke. But I'm thankful I know rather than worrying about a possible stroke.

Unfortunately, it seems I have an autoimmune issue that cannot be pinpointed. Almost as if I'm on the verge of MS, so I'm not out of clear for something else happening.

 

[Sonic17]

@Tinker Bell
Thank you for the information. What makes you think you have MS? Did something show up in your bloodwork? Do you have other symptoms besides Tinnitus? Sorry if I sound too nosey...if you do not want to share this information on the forum I understand.

 

[Tinker Bell]

@Tinker Bell
Thank you for the information. What makes you think you have MS? Did something show up in your bloodwork? Do you have other symptoms besides Tinnitus? Sorry if I sound too nosey...if you do not want to share this information on the forum I understand.

Blood work and MRI were okay, but in a small percentage of MS cases the diagnosis can only be based on a continuation of autoimmune attacks. I had optic neuritis a couple years ago, which is linked to MS and can be a first sign. Losing my hearing suddenly not even two years later was another huge red flag. They're not ready to diagnosis yet, want to keep monitoring me.

 

[Sonic17]

@Tinker Bell
Awww, sorry to hear that Tinker Bell. Having T makes me worry that I am at the early stages of an autoimmune illness. My CT scan was good but I declined going for the MRI. I just decided that if I have an autoimmune illness there is nothing they can do for me anyways.....I will just keep living and enjoying my life as long as I can.
Take care Tinker Bell, you are in my thoughts.

 

[Tinker Bell]

@Tinker Bell
Awww, sorry to hear that Tinker Bell. Having T makes me worry that I am at the early stages of an autoimmune illness. My CT scan was good but I declined going for the MRI. I just decided that if I have an autoimmune illness there is nothing they can do for me anyways.....I will just keep living and enjoying my life as long as I can.
Take care Tinker Bell, you are in my thoughts.

Thanks, that was very sweet of you and I appreciate it! I'm probably in denial, but I'm trying to not think about it. There's no sense adding to my anxiety! My heart goes out to anyone dealing with possible autoimmune worries.

 

[PaulBe]

My doctors were concerned about a possible stroke, so I was referred to a neurologist who specialized in treating stroke patients.

Did anything come of that? I lot of strokes get missed, or diagnosed retrospectively. A "stroke" is really a kind of syndrome which can have multiple causes and outcomes, kind of like the term "heart-attack" which is really a catch-all term that covers a number different medical events. As to whether you can request an MRI/A/V, I can't speak for the American system (I've heard its unspeakable) but under our public system it will only be covered when requested by a Specialist/Consultant. Privately? You probably could get it done if you were paying.