posted
Since my mega crash of almost a year ago (written about previously) which I have not recovered from, I've had the most awful hyperacusis, vibration sensitivity, and continuous pounding on the right side of my head.
It feels like a post-encephalitis symptom or something, as I think some of my neurological symptoms that peaked earlier this year might have been encephalitis from a more acute infection. My memory is also much worse and EMF sensitivities are through the roof.
I can't tolerate any sound really -- can almost never be around people due to the noise, stimulation, and exertion (worse than before) -- and if I listen to even a few seconds of a song the throbbing/pounding on right side of head gets more acute and all of my neuro symptoms get a lot worse for hours. So no music for a whole year, although the TV is now okay in moderation.
Mainly I want to know if anyone has this throbbing thing along with hyperacusis, along with a twitching right eye from sound or an increase in neuro stuff. I also would love to hear from anyone whose EMF sensitivity increased with hyperacusis.
My LLMD thinks the hyperacusis is bart more than Lyme, but if it's neuro bart I'm still not sure how to get to it. Is there any way to get Rifampin over the blood brain barrier so it can better target neuro bartonella?
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Hyperacusis - and suggestions to help - in this thread:
posted
Hyperacusis is one of my worst symptoms. When I get really bad it goes off the chart. It's hyperacusis combined with a lot of sensory stimuli that will really put me in overload mode.
I had my ENT make me custom ear plugs. They are actually the type the musicians wear. They have tubes in the middle. You can still hear most sound and conversation but when things are really bad sometimes it's just enough to help me function.
I have more sharp stabbing head pain as opposed to your more constant pounding. The pain seems to pick a spot and stay there for a few days and then moves to another area.
My husband can almost always tell when I'm going into a bad phase because I constantly ask him to turn the TV down. Music has been off limits until very recently and even then I can't combine music with other noise (conversations).
My right eye also twitches and "jumps". A few months after I became ill it also started to protrude a little.
I can't really point to one ABX that has caused the improvement. I think it's just generally come as I've moved through my LLMD's protocol.
Sorry you're having this symptom - I know how difficult it is to deal with combined with the other symptoms. It is very isolating. I call is spidey-hearing.
My LLMD says that when the inflamation subsides and the nerves have a chance to heal this will improve and/or go away.
Posts: 237 | From WV | Registered: Mar 2007
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I have sensitive hearing... normal sounds drive me over the edge and I've gotten to where I am going to have to wear ear plugs just to go shopping...I can't stand the sound of the shopping cart wheels.
I have extreme vibration sensitivity... you are the first one I've read about on here that described it.
I can't touch anything that vibrates without my hands starting to vibrate long after I've touched it. Like holding onto a jackhammer for too long is what I liken it too.
I can't even grind my coffee beans in my little coffee grinder without my hands vibrating afterwards.
I feel that I have very bad nerve inflammation.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
Thanks everyone! Motown, I'm really interested to hear you have the eyeball thing too. Have you been diagnosed with coinfections too or "just" Lyme?
Icky, the vibrating thing you describe is exactly how it works for me -- it's like I become a conduit, like metal to electricity, and the vibrations just enter my body and are excruciating (like a jackhammer, like you said) and won't go away or be dispelled for awhile. It's very bizarre. I don't necessarily have to touch the vibrating thing, just have it near me, but if I touch it it's even worse.
At one point when I was at my very sickest someone walking outside of my house (like literally walking 20 feet from my house when I was inside, on the second floor) would feel to me like the house was being violently shaken, then the vibrations would start inside my body and that jackhammer feeling would start up.
Afterward I'm utterly depleted, like I really was just a conduit and got electrocuted: my muscles are weak and slack, my brain completely shuts down, I'm just completely drained.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
I use to have it really bad also before I found out what was going on and started abx. My neighbors kids use to drive me wacko when they would play in front of my house. I couldn't sleep without xanax or something else, and then I would still wake up at 2 AM and then just lay there until it was time to get up. I could only watch certain TV shows like cooking shows and documentaries because I couldn't stand violent outbursts of any kind, esp gunshots. Track laughter would drive me crazy also, so that took out all the comedy programming.....whah!!! I would have to wear my headphones in order to watch TV with any one else in the room so that it could be turned up loud enough for them to hear it.
But that nightmare has loooong since past. I sleep like a baby every night (for years now) without anything but 2 mg of timed release Melatonin. I use to twitch all day every day also (completely gone for over 2 years after stopping all mag and other supplements). Turns out I had just about every infection, including Microfilariae. So just to let you know, these things can all be conquered!!! And I did it all on orals.....no IV abx
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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