Sound sensitivity/hyperacusis

Since November 2016 when I first started showing symptoms and was forced to leave UofM during my senior year, I have been in an up-and-down health battle/crisis. What started as mere vertigo, nausea and insomnia developed into more serious neurological symptoms such as extreme sensitivity to light and sound, severe headaches and migraines, loss of consciousness, inability to state my own age or remember the word for watch, loss of control of my own bladder leading to catheterization and more, my local hospital continued to misdiagnose me and give bullcrap reasons for each hospitalization. As these more severe symptoms began to fade, I was left with muscle and joint pain and stiffness ranging from mild to severe for about 5 years. Then, in the beginning of October 2022, out of nowhere my neurological symptoms slowly started returning but with more intensity and I began having heart issues; thus, it resulted in another hospitalization. Again, the doctors simply tried to alleviate symptoms and pain without trying to figure out the underlying CAUSE of the symptoms. Upon release from the hospital after 5 days, my symptoms worsened and my mental health and mind, which had both stood so strong for so long began to wither away along with my physical body. I started to have intense mood swings, major anxiety and depression, crying fits, cognitive impairments, inability to concentrate, severe brain fog, low frustration tolerance, extremely irritability and much more. It felt like I was no longer controlling my own emotions or mind. I had lost all hope and all strength to fight whatever was happening to my body and mind. However, a few weeks earlier I had perfectly matched my symptoms to that of Neurologic Lyme Disease and In already knowing how miserably the medical system in this country had failed me, I ordered the appropriate antibiotics used to treat Lyme from India. Not only did neurologic Lyme disease have the same physical symptoms, i remember reading that it can produce extreme personality changes and even cause schizophrenia, bipolar disorder, autism and dementia to name a few. After my final hospitalization, with my mind and mental health at it’s limit, the antibiotics arrived from India and in a desperate attempt I began taking the appropriate dosage for Neurologic Lyme. After a few days, my family and I knew I had found the answer that all my doctors (37 of them) failed to recognize. A Lyme specialist a few days later confirmed my suspicions, saying I was a textbook case and just an ordinary patient for his practice; he put me on the same antibiotics I was already on but from this country and prescribed, as well as an anti-malaria/anti-parasitic to combat the parasites/coinfections that often comes with Lyme. Most symptoms have gotten better and some have gotten worse since I started the antibiotics a week or so ago. My sensitivity to sound, hyperacusis, has gotten dramatically worse along with nonstop tinnitus since starting the antibiotics. I cannot tolerate any sounds at all, wondering if anyone else had a similar reaction to the antibiotics? At least I finally have an answer after 6 years of not knowing and being undiagnosed.

I just spoke with him. He says it is called vestibular hyperacusis since any noise will trigger vertigo, loss of balance and nausea and is a result of the Lyme that attacked the vestibular nerve and inner ear. He said hopefully with time it will get better and may heal, but for some it is usually a permanent result from the Lyme. Thank you for your advice and recommendations!

I was treated for babesia with malarone and my antibiotic was doxycycline

No, not treated for bartonella and a few months of malarone for the babesia

I will have discussion with him because any noise is essentially triggering horrible vertigo. Unbearable and cannot live like this

I have been treating Lyme for a little over 2 and 1/2 years. While I haven’t suffered to the degree many have with the sound sensitivity it has been worrisome. It does get better with treatment. I find that the symptom comes and goes as I move through treatment. I don’t believe the claim that this is due to permanent damage. I have read/heard too many success stories of people recovering from neurological lyme. The body is resilient-capable of making some of the most impressive of comebacks.

Hang in there!

I’m praying you guys are right. Thanks for the support. Easily the worst few months of my life

probably a herx like reaction - i have heard of many of the same kind of things from others who are in treatment - but many of these people get better also

you dont mention the doses - but the herbs can be very potent - i find Cryptolepis particularly powerful - and others report very strong reactions to some of the others - particularly monolaurin

some may also increase the effectiveness of the pharma ABX when used together ( which is a good thing - but you still have to go through the herx reactions)

sounds like you are doing a lot of the right things to try to ameliorate the severity of herx like reactions - but often there is only so much you can do

you may just need to go a bit easier on the anti-microbials at first - if the current regime is too much for your body

good luck

Jason Gottlieb said...
Hi guys,
Just wanted to see if you guys ever experienced this pulsatile tinnitus where you can just hear this pulsating in your ear like your heartbeat, very annoying. In my other ear I hear whooshing sounds like listening to my blood pass by a nearby artery or vein. Otherwise not a horrible day today in terms of new symptoms. Happy thanksgiving to those who celebrate! hopefully next year I can actually eat at the table with everyone instead of in the dark with my earplugs and sunglasses on! Much love to all!

YES!! I had the pulsatile tinnitus.
Thank goodness it resolved - I had it for a couple of years.
One ear was worse than the other.
When my ear was on the pillow I’d hear swooshing.

Also when I stood up from sitting I’d hear my heartbeat in my ear!

Years? Uh oh…so annoying! But better than almost all other symptoms so if that’s what I’m left with for a couple years I’ll take it. Glad I’m not alone. Just hope my vestibular hyperacusis starts to resolve so I can stop getting severe vertigo every time there’s a noise too loud for me, which is basically anything, even with the earplugs and industrial earmuffs on.