What 1.5 Years of Detective Work Got Me

Hello dear tinnitus sufferers.

My tinnitus started October 2014. It was a strange phenomenon that resulted in a lot of crazy things.
First, it kept switching from one ear to the next.
Second, it changed sounds/pitch/tone/frequency/volume ALL of the time - it made is VERY difficult to live my life and I found myself thinking of suicide daily
Third, I developed INTENSE ear pain on a daily basis
Fourth, I became intolerant to sounds - more specifically my ear would flutter with sounds (water, voices, open spaces).
Fifth - I had crazy electric snapping sounds on my head that sounded like my brain was playing tennis with itself
Sixth - Crazy ear clicking randomly started and would click irratically


I went to at least 5 ENTs, 2 audiologist, a TMJ specialist, chiropractor, acupuncturist. I was told the following:

1. "That's tinnitus - you just have to learn to live with it"
2. "You have Eagles Syndrome - here is a pamphlet (mind you I was crying on my floor in pain daily)"
3. "That doesn't sound like anything I have heard..."
4. "You have TMJ"
5. "How do you handle your stress levels?"
6. "I think you should go see a psychiatrist"
7. "You have tensor tempani syndrome"
8. "You have an inner ear autoimmune disease"

The strange thing is my symptoms were, quite frankly, debilitating. I could not work. I was crying all of the time. I was in SUCH a low place. The hard thing was the tinnitus, ear pain and sound sensitivity was incredibly unpredictable. I did not have a life.

About a year later I was on the phone with a friend crying to her about how debilitated I was. She mentioned "I think you have Lyme Disease". I was something that I first became aware of about 1 year prior when my left knee swelled up for no reason. Again, I went to the medical world and was never told why it swelled up and what the cause was. I was asked by the doctor if I had ever been bit by a tick. I said that I did have a strange bite on my foot in 2008 that left a circular rash but that I did not know what it was from. We ended the discussion there. After about 3 months the swelling went away.

I decided to get a Lyme test done. With the results I met with a doctor that diagnosed me with Lyme Disease. I went for a second opinion and, again, was diagnosed with Lyme Disease along with other infections.

So, I began the journey of antibiotics. Strangely, my symptoms began to improve. My sleep improved. My hearing issues began to stabilize. My crying spells stopped. My ear pain went away for months at a time. The sensitivity to sound improved. In fact, about 6 months into the antibiotic treatment I was 70% better. Sure, I still had baseline tinnitus, but IT WAS LIVABLE.

At 9 months I began IM antibiotics and found that it sent me to the next level. There were points when I didn't have ANY hearing issues. However, this was all short lived. One night I even woke to NO TINNITUS. i actually stayed awake that night enjoying the quiet. It was amazing.

While the antibiotic treatment was helping dramatically. I still had doubts and wondered if my hearing improvement was due to other things I was doing:

1. Diet
2. Stress Reduction
3. Sleep
4. Reduced work hours
5. Introspection

I have read on this forum that tinnitus can improve, as well as hearing sensitivity. However, I wrote a few posts at the beginning of my journey and never had any comments written back with others sympathizing with my debilitating symptoms. Especially what I was describing in constantly changing sounds that did not have a trigger. Literally, everyday was a different journey in the tinnitus/ear pain world.

I am still on antibiotic treatment for Lyme and co-infections. My hears have improved DRAMATICALLY. I still have some underlying tinnitus but the ear pain/sound sensitivity for the most part has disappeared. I am still unsure if what bit me in 2008 was a tick but I do know that strange symptoms began popping up after the bite. Including:

1. Joint popping and cracking
2. Increased anxiety
3. Jaw aches
4. Neck pain
5. Hair loss
6. Weird rashes on body
7. Knee swelling
8. On/off wrist pain
9. Finger joint pain
10. Headaches
11. Night sweats
12. Tinnitus/electric zaps/hearing sensitivity/ear pain/ear clicking
13. Aural migraines (without the actually migraine)
14. Eye twitching
15. Head twitching
16. Difficulty swallowing
17. Crazy crying spells
18. Digestive issues
19. Fatigue - I couldn't hike like I used to

I never pieced anything together. I literally thought most of the above symptoms came with aging. It wasn't until I began the antibiotics that I noticed the symptoms started to go away. Along, with a strict diet and reduction in stress I found myself getting better. Granted, it was/is A LOT of trial and error. I am still seeking answers and trying to understand what is happening. My main question is why did the hearing symptoms drastically improve with antibiotics? No chiropractor, accupuncturist

I went to an audiologist less than 2 weeks ago and he saw that my hearing had decreased in the past year. He literally said to me "the only people I see this type of hearing loss with is those who go through chemotherapy". Granted my symptoms were "flaring" at that moment and the hearing loss appeared to be a symptom of the flare.

So, I will continue on and seek another opinion and get my hearing tested again in a few months to see if things improved.

In conclusion:

My hearing issues improved dramatically after I began Lyme treatment. Could it had been a coincidence? I don't know. Yet, my gut tells me that the abx helped my symptoms. Once I began clearing the bacteria from my system I began to feel more like myself. On a good day I feel like I am 85% myself again. Is it too stubborn of me to climb for 100%? Part of me feels that 100% isn't possible and, truth it, I am okay with that. I have made peace with the underlying tinnitus. As long as it stays relatively the same and allows me to carry on with my life, I can function. I still have down days but they are much less than they once were.

I would suggest to those out there that if your ear symptoms do not fit the normal criteria and you find yourself unable to function because of such symptoms. Do not give up. Please. There is always an underlying cause for our symptoms. Simply "learning to live" with symptoms that are debilitating is unacceptable. Helping someone find their balance is a medical professionals duty. Sending someone away with no answers or understanding of what is happening to them is causing more harm!

Again, I will continue to my journey until I find I am able to fully accept my symptoms. Lyme Disease mimics so many things. Sure, it probably isn't just Lyme Disease that caused my symptoms but I will continue to investigate until I find my balance.

Until then...

Keep fighting. You deserve answers. Do not give up on yourself. If you don't understand what is happening to you...keep asking questions. Just being told to "live with it" is a fucking joke!

Kindly,

Jennifer McCombs

 

Hmmm. Sounds like you deserve this icon more than I do.

 

Congratulations on finally getting some answers. I have a lot of those same symptoms though I do not have Lyme disease. It is really frustrating when no one knows what is wrong with you. I am almost 3 months in and still no one can tell me what's wrong with me. Hoping to get some answers soon too.

 

Wow! I think a lot of us can relate to your story. I've been bouncing around from doctor to doctor myself. So happy for you to have found your answer! God bless.

 

@jmccombs82

I'm a lyme sufferer too, and I also know how hard it is to get adequately examined!
I'm so sorry you had to suffer so long and go from one diagnosis to the other, but I am equally glad that you found relief and are now recovering! It's a horrible thing that so many physicians and neurologists (even ear doctors) are incredibly ignorant of lyme, and thus you spend all of your energy, time, and $$ on treatments and medications that turn out to be entirely useless.
But you are lucky your suffering was not stigmatized (or at least I hope you weren't). Everyone around me simply believed that I was a hypochondriac and had a severe anxiety disorder up until last week, and at one point I was put in an institution for 2 weeks at the beginning of May!

For me, lyme disease has been either the primary or secondary cause of my hearing loss, T, hyperacusis, ear pain, otic migraines. I pretty much match every single one of your neurological, ear symptoms.

I had a few questions for you, if you don't mind, as there are not many people with lyme who do not discuss hearing issues. I am very concerned because I am losing my hearing, more rapidly now than ever.
What pattern of hearing loss did you have, and has it improved with antibiotic treatment? Were there other things involved in making your hearing worse or was it mostly lyme disease? Also, what kind of antibiotics have you been put on, and have you tried alternative therapies?

For the record my hearing loss is both high, and more recently, very low frequency. I am on doxycyclene as my primary antibiotic right now.

Thank you for your help in considering these questions and I hope you continue to get better!