I thought it may be good for us to compare our tinnitus and provide some history as to when / how you got it and if you've been able to rid yourself of it.
Quesitons to answer: -Describe your tinnitus -When did you first notice it? -When is it best / worse? -What makes it better / worse? -Does it change with musculoskeletal movements (turning head, open jaw, pressing on side of head, etc) -Do you get "Zaps" (quick spikes in volume increase for less than 10 seconds.)
Thought it would be good to see what others are dealing with.
Here is my story:
-Describe your tinnitus: Usually fairly faint and "in the middle of my head". It is usually a high whisper
-When did you first notice it?: I had been feeling unwell for about a month. Thinking it was stress, I went to Chiropractor who adjusted my jaw violently. 8 days later my ears started to ring.
-When is it best / worse? Best in the morning. Almost silent. Worse at night.
-What makes it better / worse? Rest makes it better. Stress / Fatigue makes it worse.
-Does it change with musculoskeletal movements (turning head, open jaw, pressing on side of head, etc): YES! Opening my jaw wide increases the volume. Turning my head to the left increases left ear volume. Pressing on the side of my head near my left ear makes left ear volume louder. Right ear rarely is impacted by musculoskeletal changes.
-Do you get "Zaps" (quick spikes in volume increase for less than 10 seconds.) used to get them a lot, but have not had issues in recent weeks.
Posted by Keebler (Member # 12673) on :
- I am very sorry to hear this: " . . . Chiropractor who adjusted my jaw violently. 8 days later my ears started to ring. . . . " (end quote)
It sounds like the tinnitus could have been induced by the physical trauma of the adjustment. It can certainly happen. Forceful neck adjustments certainly caused huge flairs of tinnitus for me, several times.
I know now that lyme patients should never get sudden twists of the neck but only gentle adjustments.
Have you seen a neurolotogist (neuro-otologist)? That is really best. You can compare experiences with a million others but what you need to know is exactly what is going on in your case.
It's usually a combination of factors but a neurotologist is the best kind of professional to start with - along with your LLMD as lyme is a major cause, especially after a trauma to the neck and lower part of the head.
==========================
For anyone who replies (as I'm pretty sure bcb has seen these links before - but others may not have): ---------------
Ringing, hissing, roaring, pulsating sounds or sensations in the ears:
Many meds and OTC products can cause tinnitus. Here are just some of those - also check the manufacturers product information page and cross search: Rx name, tinnitus. -------
There are at least 743 drugs that are known to be ototoxic. Here are just 84 of them:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posted by bcb1200 (Member # 25745) on :
Thanks Keeb. Yes...unfortunately I had my jaw wacked. It is amazing what you will do when you are desperate. My jaw had been slightly off since a sports injury in college..so thought it wouldn't be a big deal. I now know never to mess with your TMJ forcefully. I basically had trauma.
Feels a lot better almost 1 year later, but still not yet 100%. And I never had tinnitus before this.
I feel my tinnitus could be caused by a combination of many factors. TMJ / jaw trauma, lyme and Bart. I do think perhaps the manipulation "squished" some lyme into the joint or ears to places they weren't before.
Worst part is..I don't know if it is from lyme or musculoskeletal.
Posted by Keebler (Member # 12673) on :
- You say that you "don't know if it is from lyme or musculoskeletal." (end quote)
Assume both - and probably a bunch of other factors, too. I don't think either tinnitus or hyperacusis have one (or even just a couple) causes. By the time it gets bad, all systems are usually affected and a multi-pronged approach in required.
Heavy metals need to be considered.
Be sure you are getting B-1, B-6, B-12 and Folic Acid.
Demyelination is also a huge issue with lyme.
The medical mushroom "Lion's Mane" is also helpful to nerve nourishment. The official name starts with an "H" but you can do a nice search on the web and at PubMed with the common name.
Here's a link that TerryK recently brought to my attn. Note that "hypersensitive nervous system function" can certainly include tinnitus. ------------------
LYME DISEASE & MITOCHONDRIAL DISORDERS By Melody O'Beau
. . . A vitamin B1 deficiency is well documented to have the capability to cause both hypersensitive hearing and hypersensitive nervous system function. . . . -
Posted by Keebler (Member # 12673) on :
- Scroll to the bottom of this thread to find FELDENKRAIS - see if you can find an ILADS-educated LL Feldenkrais practitioner. There is an article there about one who understand lyme.
Topic: How to find an ILADS-educated lyme literate (LL) professionals in these areas:
Naturopathic doctor (ND); Acupuncturist (L. Ac.), a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, . . .
. . . Holistic MDs, and also Doctors of Osteopath (DO) and Doctors of Chiropractic (DC), etc.
�� Includes many professional links, articles and books on complementary / integrative methods - & RIFE links -- all by LL authors.
Also included are basic links explaining the principles of herbal medicine.
BODY WORK considerations (geared to lyme patients) are discussed; with links. -
Posted by been (Member # 23127) on :
-Describe your tinnitus Constant "hissing sound" is the best way I can describe it.
-When did you first notice it? 4 weeks after I started Mep/Zith/Plaquenil
-When is it best / worse? It's always there sometimes it stops out of the blue. When I notice that it's not there it comes back shortly there after.
-What makes it better / worse? Nothing
-Does it change with musculoskeletal movements (turning head, open jaw, pressing on side of head, etc) No change
-Do you get "Zaps" (quick spikes in volume increase for less than 10 seconds.) Sometimes the volume spikes for a second or two.
Mt LLMD says it's nerve damage. I just want it to go away...
Posted by unsure445 (Member # 15962) on :
I hate to be the bearer of bad news but the ENT that I use has said that tinnitus, no matter what the cause, doesn't go away once it is chronic. If you have had it for a few weeks and then some you most likely will have it for life.
Certain meds will make it worse, for me it's BIaxin, but it drops down in volume whenever I go off of it.
I tried acupuncture for it several times and I had one day of no tinnitus but it was back the next.
I have used a product called Bioear that helps a little. You poor some on a cotton ball and sleep with it in overnight.
I wouldn't stay on treatment for tinnitus because it won't make a difference.
Posted by unsure445 (Member # 15962) on :
I hate to be the bearer of bad news but the ENT that I use has said that tinnitus, no matter what the cause, doesn't go away once it is chronic. If you have had it for a few weeks and then some you most likely will have it for life.
Certain meds will make it worse, for me it's BIaxin, but it drops down in volume whenever I go off of it.
I tried acupuncture for it several times and I had one day of no tinnitus but it was back the next.
I have used a product called Bioear that helps a little. You poor some on a cotton ball and sleep with it in overnight.
I wouldn't stay on treatment for tinnitus because it won't make a difference.
Posted by dogmom2 (Member # 23822) on :
-Describe your tinnitus 2 noises, one is a sort of rattling or wind through a tube sound, the other is a high pitched electric wire sound.
-When did you first notice it? 1st sound:few weeks after starting zithro/mepron treatment. 2nd sound: day I tired computer based-rife.
-When is it best / worse? Gets louder around noises.
-What makes it better / worse? Nothing
-Does it change with musculoskeletal movements (turning head, open jaw, pressing on side of head, etc) No change
-Do you get "Zaps" (quick spikes in volume increase for less than 10 seconds.) no
Posted by Robin123 (Member # 9197) on :
My tinnitus is constant - high sound, from early on.
One treatment has affected it - when I held a white coil from a PEMF machine - pulsed electromagnetic machine - the tinnitus stopped for six hours.
I spoke with a top LLMD about it and he said it was probably quieting down the nerves to the ears.
Our bodies are electromagnetic. Illness drops that to a low, and the machine boosts it in us. Chiropractors sometimes have them. The one I tried was a 500-700 strength one.
Posted by RubyJ (Member # 28711) on :
Discription: very high pitched, I guess an electric whine is the best way to describe it.
When: started over 20 years ago when my other neuro problems started. It hasn't stopped since. It's constant.
When is it best/worst: No pattern
What makes it better/worse: Nothing. Been to ENTs, etc. No reason found for it, nothing to help.
Doesn't change with physical movements
Sometimes the pitch or volume changes for a few minutes to a few hours, can't really call it a zap.
I like to have music or the tv on always. Outside noise helps drown out the ringing. Posted by stngray114 (Member # 30295) on :
My tinnitus is 24/7! I actually have at least three different noises going on; a steady high pitch ring on the right, a roaring noise on the left, organ style music on the right, and I believe that chimes play on the left at times. It starts from the time I crawel out of bed and stays until I am fortunate enough to fall asleep at night. At times it gets very loud, I would say a 9 on a scale of 1-10, usually in the evening. This is no doubt the most aggravating symptom that I have, and it has increased since starting treatment with oral Doxy. I call tinnitus a "curse", though I know that there is no such thing as a curse, because it is dehibiltating for me to function on any given day. I would have to say that stress increases it, and I have stress because of putting up with the tinnitus so I am at a dead end, no way out of it!
Posted by wealdsteve (Member # 25281) on :
Describe your tinnitus Like a constant sound of crickets at night.
-When did you first notice it? About 4 years ago, One of the main sympytoms that led me to lyme
-When is it best / worse? constant all day, mainly central but lately seems to be more to the left.
-What makes it better / worse? Nothing
-Does it change with musculoskeletal movements (turning head, open jaw, pressing on side of head, etc) Changes when I chew on something hard.Changes tone with every chew
-Do you get "Zaps" (quick spikes in volume increase for less than 10 seconds.) Yes, seems to be worse when im drifting in and out of sleep in the mornings.
Posted by LimeyLymey (Member # 29397) on :
Pretty similar to wealdsteve - we're from the same part of the UK though, so I imagine we've probably got the same flavour of Lyme.
-Describe your tinnitus
Constant very high pitched whine/buzz/cricket sound
-When did you first notice it?
About a month or so after I first felt ill. I was taking antibitocs for a root canal at the time - not sure if that is related.
-When is it best / worse?
Pretty constant.
-What makes it better / worse?
Nothing that I am aware of.
-Does it change with musculoskeletal movements (turning head, open jaw, pressing on side of head, etc)
It gets louder when:
- press above my right temple - turn my head fully either way (louder when I turn it to the left) - clench my teeth (louder on the right) - tilt my head right back into my neck
-Do you get "Zaps" (quick spikes in volume increase for less than 10 seconds.)
Not that I have noticed.
Posted by shazdancer (Member # 1436) on :
-Describe your tinnitus Usually faint to non-existent, as I am feeling well. Can sound like high-pitched crackling of tin foil. When very ill, sounded like spring peepers! It has never been debilitating, but my hearing loss requires hearing aids.
-When did you first notice it? Around 2004-5, during a relapse of TBD, before Mepron/Zith was administered for babesia.
-When is it best / worse? Best when I'm feeling well, worst when I'm ill/sleep deprived
-What makes it better / worse? Sufficient deep sleep or tx has made it better
-Does it change with musculoskeletal movements (turning head, open jaw, pressing on side of head, etc) No
-Do you get "Zaps" (quick spikes in volume increase for less than 10 seconds.) No, though my hearing without hearing aids seems to fluctuate
Posted by phyl6648 (Member # 28522) on :
Tinnitus, mine started about 11 years ago and now is with me 24/7 and loud hissing, cricket chirping sound. When I am tired or have sinus/ mcs problems, the ringing is worse.
My lyme all started with a vertigo attack. Then the weird head feeling then the ringing in ears .. When put on and antihistmine the ringing was much worse so can't take those. I know no meds caused mine because I had the ear ringing way before any meds.
Was treated for inner ear problems for 3 months, then finally saw an ENT he said sinus infection. That is when all the antibiotics started and their reactions. I do remember one day my ears were silent and so was my anxiety. I do think with me ear ringing causes anxiety.
That was 11 years ago and now I know its all lyme related. Oh, the ENT put me on xanax for the vertigo which helps some with the ear ringing.. So have been on xanax off and on ever since.
Then came many other symptoms but took 11 years or longer to get a lyme dx. Still on no meds except supplements and vitamins. One doctor prescribed 3 months of doxy..but I had bad esoph. problems so off for now till the esoph. heals and not sure what will happen..
Oh, now I have a pulsating sound in my ears when I lie down at night.. along with all the ringing..
Posted by lymeinhell (Member # 4622) on :
quote: now I have a pulsating sound in my ears when I lie down at night
Check your blood pressure when this happens. I used to get this - sounded like I could hear my heart rate in my ears - and my bp was high.
Posted by annier1071 (Member # 28977) on :
I have tinnitus 30 years now along iwth menieres disease. It never stops but I dont notice it any longer, sadly I got used to it. Yes if you turn your head certain ways or open your jaw up high it will ring louder. It rings bad in bed at night when things are quiet. I have hearing that fades in and out from time to time.
This is why they keep saying menieres. I was surprised to be diagnosed lyme, but it made sense that things had grown so much worse in the last year. Something triggered it...hence lyme.
Posted by NMN (Member # 11007) on :
Icon 1 posted 03 February, 2011 10:38 AM Profile for NMN Send New Private Message Edit/Delete Post Reply With Quote I have the same thing. It started about 3 days into my first round of doxy for suspected lyme. Came as part of a herx and the ringing and buzzing of my CNS has never stopped apart for one day between changes in meds about a year an a half ago.
Its was like being in the eye of a hurracane that has lasted 3 years. Total peace and symptom free. I had just come off a round of levaquin and mino and I did a course of riamet on its own.
I spent that morning walking along the beach and just felt so normal again...It was like being in heaven. That lasted until about 4 pm and the symptoms started to come back and I have not been there since. This disease is cruel beyong belief.
My LLMD says he believes its the bart or lyme inside the nerves.
For me the fact that I got a whole day of normal on account of a flukey meds change tells me its is not permanent nerve damage and is directly attributed to infection as my LLMD suggests.
![[Frown]](frown.gif)