Does anyone have an issue with hearing, being extra sensitive to sound to the point of getting sound induced migraines, and having a strange feeling in the head as if you are hearing under water or hearing the volume of your heart, etc? That's the best I can do to describe it.
I'm curious what this is attributed to and if it can be addressed successfully?
thanks, pt.
Posted by TF (Member # 14183) on :
I had ocassional sound sensitivity when I had lyme, babs and bart.
All of a sudden the radio would be deafening!
Posted by Pinelady (Member # 18524) on :
My LLMD says lyme can be very damaging to the ears
and recommended sweet oil drops to protect them.
Posted by Keebler (Member # 12673) on :
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
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While reading can offer some solutions, please ask your LLMD about this. It could be from a particular Rx and it may need to be changed. Details about important diet changes and liver support are in the Tinnitus thread.
Also, you should be seen by an ear specialist. Best if they are Lyme Literate as many ear doctors like to give steroids and that can spell disaster for lyme patients.
Your LLMD should guide you here and if he or she thinks you need to see ENT or otoneurologist, hopefully, your LLMD will know of someone who is very LL. While not everything about the ears is lyme, lyme patients certainly have a much more complex presentation. -
Posted by painted turtle (Member # 7801) on :
Thanks all.
Just unsure about whether this is about the ears or about the blood flow or about both.
Keebler...no LLMD for me these days. Ran out of money and patience after several years with and without antibiotics.
Def have the migraine/trigeminal neuralgia thing, lyme induced or not. Recently have decided to see a new neurologist who specializes in pain and headaches. Don't know if he is LL, probably not. But hoping he can also help with the hyperacsus thing and pinpoint how much is to do with sound and if any is to do with blood flow.
Posted by Keebler (Member # 12673) on :
- First, as Carol in PA reminds, magnesium deficiency is frequently a cause of hyperacusis.
The fluid buildup can be from some foods, even. Dairy, soy, gluten and corn are the most common and all ear patients are instructed to avoid those as they try to determine what is causing fluid buildup.
Being sure your home is a scent and chemical free as possible is also important.
If unsure, of course, get to a doctor. It could be something in the ears or the brain - or a toxic liver. But you should cover your bases. Not everything is lyme.
Sadly, I have never found any neurologist to be of help. However, as long as you are prepared, and you are strong, it seems logical as they are supposed to know about all sorts of things and you should be checked out.
I think, for hyperacusis, you'd do better with a neurotologist. Can you call your local lyme support group and see if anyone there has experience with one who is LL?
If not, some neurotologists do know something about lyme. It was one who told me to get tested and - he was right !
He also wanted me to take steroids, though, so while he knew enough that lyme can cause all sorts of hearing problems, he was not LL enough to know steroids can make things worse for lyme patients.
Still, I was treated with respect by him (unlike the neurologists) and he considered many things that might have been wrong.
I advise you NOT to even mention your history with lyme to the neurologist. If you do, you will likely be dismissed. I don't know what state you live in, but some states are much worse in that regard than others.
Even if you have no LLMD, if you think lyme or other TBD have not been resolved, there are still things you can do. Anyway you can find a good LL ND (naturopathic doctor)?
ADRENAL dysfunction is also very common with the kind of ear problems lyme patients face. More about that in the thread above.
And, body work may also be in order. GENTLE Cranial-sacral therapy, etc. Any good DCs or DOs near you?
-
Posted by painted turtle (Member # 7801) on :
Hey Keebler,
I appreciate all your good advice.
I'm with you about my approach to the neurologist, unfortunately. I won't mention the lyme, I don't think. I will feel him out first. My primary reason for going is to make one last attempt at getting some help for my pain and the hyperacussis. This guy, I found in an article in NYT health, specializes in migraines which run in my family in a big way.
I don't attribute much to active lyme anymore even though I don't know if I am correct. i think it's a post problem of the highest magnitude.
And my muscles spasm and twitch, magnesium has been of no help whatsoever.
So I am living one day at a time, going on my third year out of work and living in great loads of challenge and pain. I've completely given up on the lyme world, it is way to problematic although the lyme world did save my life when I was at my worst with the encephalopathy and etc.
Again, thanks for your great words of wisdom.
I do licorice tea in the morning to help adrenal fatigue, which I was tested positive for at one point.
The full span of this disease can be so complex. Really. One day I do hope it comes to light.
I've also done energy work, massage therapy, lots of accupuncture...all were very helpful. I've come a long way believe it or not!
Posted by painted turtle (Member # 7801) on :
Carol,
If you are still reading this...I just discovered that Meniere's is a buildup of fluid that sounds like what I am dealing with (in combination with migraine and hyperacussis).
Have you been able to cure your problem?
I am very curious as to how one can have both a super sensitivity to sound plus the sort of deafness at the same time?! How does that make sense?
Posted by rainbowriver (Member # 24772) on :
Keebler, saw that you have tinnitus. can you share how you got it and what the cause might be and if you got treatment?
I have had lyme and coinfections (Bart, Elichia) for 8 months. I had only doxy for a while. but symptons came back. My LD said that I had bart. He put me on Rifampin and Bactrim DS. the next day my ears were like on the airplane (pressure like feeling, aches, popping and tinnitus). I was on it for one month and finally had to get off the med due to ear problems.
Now I still have tinnitus and the other ear problems seem to have lessoned.
I am wondering if I still have lyme/bart. what is causing the tinnitus, could it be rifampin/Bactrim?
Any cure for tinnitus?
Thanks
Posted by aMomWithHope (Member # 19255) on :
Interested in learning more on how to protect the ears----
Thanks!
Posted by Keebler (Member # 12673) on :
- rainbowriver,
I don't have the energy to sort it out but all I know is in the Tinnitus thread above. Andrographis has been my best helper (read all about it in Buhner's "Healing Lyme" book).
Cure tinnitus? FIrst get a good evaluation by ear specialists. There are many possible causes.
If noise damaged has caused this, a cure may not be possible. But, some nutritional supplements can help.
If from infection, treat infection but with drugs that are not ototoxic. Liver protection is vital. Toxicity is a main cause and the liver is key to reducing toxins. Diet, too, and self-care.
Adrenal dysfunction is also related.
More about all that at Tinnitus thread above and at the Tinnitus Association link.
Good luck. -
Posted by painted turtle (Member # 7801) on :
Well, it's been a journey.
The migraine dr. was not helpful and ignorant about lyme.
My ears continued to get worse. The ENT did not see infection. Thought it was eustacian tube swelling and sent me on my merry way with Vitamin E drops for the itch and suggested an allergy test for sublingual immunotherapy for my severe allergies. I have not scheduled this. At this visit, the ears did seem to be resolving on its own.
But it started to get worse again so I squeezed in with my neuro and the PA saw an obvious ear infection. I got some drops and used them for three days. They helped a little.
But now I am left with a constant sound in my right ear. And throb. And itch deep inside it. Periodic ringing. Feels like something is in there. Then in the left ear, a clicking once in a while. Oddly, yesterday when I burped several times throughout the day, I felt the pressure coming up out of my right ear. Any ideas anyone on what I might be dealing with here? The left ear isn't much of a problem, it is primarily the right ear which makes me wonder if it is related to the trigeminal nerve.
So now I am deciding whether to go back to ENT or Neuro for this. Probably neuro. I have a feeling it could be related to the migraines, maybe is a result of the treximet, or I was unfortunate to have a loud sound throw my ear over the edge. I can't imagine not being able to get this to go away.