@Jkph75
That's the thing with lyme disease testing; all of them have high false negative rates, so it is better to be evaluated by a lyme literate doctor to see if your symptoms correlate to those seen in lyme patients. To quote some website, a lyme literate doctor is an "MD practicing medicine according to the diagnostic and treatment guidelines of the International Lyme and Associated Diseases Society (or ILADS)".
So here is some info of how to find a lyme literate doctor:
http://mylymediseasetreatment.com/l...ind-a-lyme-literate-doctor-llmd-in-your-area/.
And just as a side note, from my visit today, the Doc. believes that I do have lyme disease and that is why my ears are really screwed up.
But I didn't know that you had deafness in the other ear. Do they know if the vestibular system is out of commission in the 'dead' ear too? I would think if you have just one inner ear doing all the work, that you may be particularly sensitive to even slight changes in the function of your vestibular system. But IDK.
So my story is pretty long. Basically it all started with a firecracker exposure in early 2015. I got hearing loss, T, and H, and depression. But I was fine otherwise.
A few months later I got exposed to very heavy bass on two occasions in may (like over 100 db), around the time I think I may have been bitten by the tick. Of course, I had more T, hearing loss, and also a little bit of tensor tympani flutter after that. I started getting migraines and trigeminal neuralgia, which was really weird to me that noise could do that long after the exposure. I recovered after a few weeks (my hearing stabilized), but I was still bogged down by a really weird depression and my thyroid started malfunctioning.
Then in August I was exposed to a really loud scream. I had earplugs in, but that noise was 110+ decibels and shook the floor. I got hearing loss right away, but a few days later I was suddenly plagued by migraines and vertigo and feelings of dissociation for 4 days straight. The bad migraines went away, but the vertigo persisted; I sometimes needed help walking and even had cognitive problems the next few weeks. The vertigo lasted for about 2 months, and my ears were from then on forever super vulnerable to loud noise.
During last fall sudden or short term loud noises around 80 decibels started giving me sudden hearing loss here and there. I also started getting tingly feelings throughout my body and hydrops symptoms in one of my ears. Nobody could explain why my ears were made out of glass; so I just got by by wearing earplugs whenever I was out in public places. Usually did the trick, but without them the world was absolutely intolerable and scary.
In the winter, I started experiencing migraines and sudden hearing losses for really strange reasons. Hiking in cold winter weather, even quieter noises than before, people talking in a group setting, certain foods, too much fun. Not to mention terrifying hyperacusis where it would feel like I was receiving an electric shock in my head from people talking to me. Eventually, I stopped having days of remission where my ears were not bothered and fell into what seemed to be a never-ending migraine. I began experiencing basilar migraines around January (chronic fatigue, dizzy feelings, seizure like experiences, dissociating, weakness, blaring tinnitus, tingling, and small bouts of sudden hearing loss in the left ear 24/7).
In March I had another 'noise accident' which turned into a whole new level of weird. I lost a bit of hearing in my right ear (a bit), but it was just like I couldn't understand my right visual field or the right side of my body anymore. The right side of my body had a dulled nauseating sensation about it, and I sometimes denied that my right arm existed; objects in my right field of vision seemed weightless and distorted, and improperly configured in space although they appeared as they should. I also had visual agnosia from time to time. I started to get more and more panic attacks, which fueled the migraines and the sudden hearing losses, which were now in both ears.
Then May came with all the dreaded senior finals and huge amounts of stress. So for the last two weeks of school, I had stroke like symptoms and seizure like experiences, not to mention my hearing was still going up and down (but mostly down) all the time. They were all migraine induced, but it still scared the living hell out of me.
I came home in late May, and my migraine triggers kept increasing to include certain body movements, postures, facial expressions, crying and laughing, which in turn all fueled sudden hearing losses. I started to get muscle spasms and pains in my neck and TMJ. Sometimes I also got what felt like mini-ischemic attacks in my ears, where my hearing would suddenly be cut in half, the room would spin wildly, and I would feel the need to throw up immediately or that I was going to pass out. Part of that was due to being on propanerol, which lowered my blood pressure far too much.
And for the rest of the summer I stayed sick with the migraines and having to deal with small hearing losses every day from almost every move I made. My circulation slowly became affected as and I lived with cold hands and feet, chronic fatigue, and always feeling like I could never catch my breath; stairs became #1 on my hit-list. For some of the summer I became so intolerant of pressure changes that I could not wear earplugs, so I became housebound and would not dare leave the house most of the time except for a brief walk or two.
And here I still am today, 3 months after that. My ears are still ringing, my head still hurts, and my hearing is still going down every day. But thankfully I now have the right diagnosis and the means to make all of this go away.