posted
LymeBlog News Lexington KY USA LymeBlog News staff www.lymeblog.com October 15, 2007
Helping Ourselves Diane J. Marie, patient advocate
Tinnitus--Ringing Between The Ears
Before I figured-out that I had chronic Lyme disease, I worked at bettering my tinnitus. I found that often tinnitus is metabolic mayhem, a result of the mess of disease, hormone levels too high or too low and hundreds of cellular co-factors in flux, often due to multiple conditions. Five factors improved exasperating noise between my ears.
1.] I learned about getting optimized treatment for my hypothyroidism. Being low thyroid means the thyroid gland in the neck isn't making enough thyroid hormone. The pituitary in our brain screams that our body needs more and that screaming can be measured with a TSH test.
I take both Levoxyl (thyroid hormone T4) and also Armour Thyroid (containing both T3 and T4) compounded for time-release by a compounding pharmacist. T4 is stored in our body; T3 acts quickly and needs to be made available slowly, by time-release.
With Armour, the Sun rises in my head! Though it's a mighty foggy Lyme Sun. T3, in the form of Armour (or Cytomel) does wonders for the workings of my brain, trying to recover from Lyme. Most doctors boo-hoo this, but it's like Lyme--when treatment helps you, you go with it!
Thyroid hormone affects every cell in our body, from the top of our head clear down to our big right toe. T4 locks-in to cells, converting to T3--little logs for our metabolic fire. Can that process be interrupted by Lyme cell damage? Lyme lives in and damages many of our cells. Can cells with enough T4 locking in for conversion to T3 help us fight Lyme better?
Too much, and we're hyperthyroid: we're nervous, jittery, our heart thumps, blood pressure goes up, headaches increase and more. Each low thyroid patient needs to find brands and dosages that work best, for them. Problems with T3 working at the cellular level are frustrating, because it's off the scope of conventional medicine, which denies its existence.
Most doctors don't know we have cells. Knowing this is crucial for Lyme recovery because if we lack T3, or it's not bioavailable, our immune system won't function well. We Lyme folks need our immune system to function well in order to work in partnership with antibiotics.
Disturbing Tinnitus is also a symptom of hypothyroidism. Infections are another symptom--and boy do we have a Lyme infection/coinfections!
Signs and symptoms are many: fatigue / exhaustion, feeling cold when others do not (more apparent in northerly climates,) digestive problems and constipation are beginning troubles, though they may be masked by Lyme or meds.
After that: foggy head, sleep apnea, insomnia, tinnitus, infections, carpel tunnel, dry hair, hair loss, weight gain, high cholesterol and lipids, high or low blood pressure, bradycardia (slow heart rate,) depression and much more.
For enormous help, see Living Well With Hypothyroidism, 2005 Edition, by Mary J. Shomon. Her website www.thyroid-info.com offers tremendous search help and ties into her about.com site. At her ``Top Docs'' page you may find a local doctor to help you. Maybe your insurance will pay for that doc.
Having any disease when we have hypothyroidism, and getting it treated and then optimized makes everything work better! I've also found that having Lyme disease and hypothyroidism means continually evolving thyroid care, such as med dosage.
In the general population, hypothyroidism is so common it's pathetic--epidemic. Thyroid issues are many. Along with other body-wide help, optimizing hypothyroidism lessened my tinnitus!
2.] Still, my head rang between my ears. I'd lie in bed appalled at the noise, unable to pass into sleep night after night `til the early hours, making more stress, frustration and pain.
I'd had insomnia for over 4 decades.
Fatigued to Fantastic Revitalizing Sleep Formula by Enzymatic Therapy helped me fall asleep and put me into 4th stage healing sleep, the sleep to help heal anything. It's a beautiful formula on the face of the Earth, balancing valerian and passionflower with other ingredients. The way to know if you've found the right dose is when you feel better in the morning. Deep sleep made my tinnitus better the following night, night after night.
When herxheimer pain prevents me from falling asleep I also use a small dose (1 mL) of Source Naturals Melatonin, liquid or spray (capsules don't work.) Be sparing with melatonin doses. It's a powerful hormone.
3.] I'd been to a very good physical therapist with love in her heart, who helped me raise my right shoulder blade with exercise. I became a little more balanced. She used ultrasound (heat) at the back of my neck, huge heating pads, craniosacral therapy and neck traction. Muscle pain and range of motion improved a bit.
I told her my worst symptom was constant, severe head pain. She thought I had myofascial trouble. That wasn't a therapy they offered, yet she arranged for a fellow therapist, to try. This therapist, also with love in her heart, performed a maneuver on me that lessened my head pain! After "things settled in my head" my tinntus lessened a bit.
I had a painful partly-locked shoulder caused by trigger points--knots of metabolic waste in my muscle fascia causing referred pain (on top of Lyme pain in my muscles, though I didn't know it.)
The Trigger Point Therapy Workbook, by Claire and Amber Davies, is eloquent and precise--the best book to explain what myfascial trigger points mean and what needs to be done. I stopped counting at 62 trigger points everywhere. When I studied the book carefully, I got rid of some trigger points, some pain and gained a bit better range of motion.
However, it was apparent I needed the best therapist in town. Armed with knowledge from studying the book, I knew what questions to ask as I interviewed crooks around town (though the Davies' method can differ.)
Four months later, I found him, with love in his heart and expertise! After several sessions he'd unlocked my shoulder more, lessened my severe, constant head pain--thank you very much--and improved my range of motion. He'd made ringing between my ears a little better. Hurray! Still, we knew something else was very wrong.
I had yet to arrive at my Eureka! moment of discovery, that I had chronic Lyme.
Please note: Many with severe hypothyroidism can develop trigger points in unexpected places. When meds don't include T3, then when you get myofascial therapy, trigger points will come right back.
Many with muscle pain have, or also have, trigger points, when they don't have hypothyroidism--even taking multiple painkillers, not knowing it's a myofascial problem.
If you think you might have trigger points--don't stretch. For example, don't reach up to a microwave, or back into a car trunk, because like dominoes, trigger points then get worse. Stretching exercise that increases pain may be trigger point trouble. Be picky about choosing your therapist.
Trigger points differ from ``tender points'' of fibromyalgia. A really good myofascial therapist can also help with fibromyalgia. When all else fails, some people get regular hypodermic injections behind their ear for tinnitus or headaches. See the Davies' book for a discussion.
4.] My myofascial therapist suggested I see an atlas orthogonal chiropractor, as my right foot was one full inch shorter than my left! I thought, ``That can't be good.''
I was very much helped by a special doctor with love in her heart. She uses a relatively new therapy, a high-tech one, which I think we're all going to hear more about. She uses a percussion wave to make gentle, major chiropractic adjustments of C1 and C2.
For a year-and-a-half I'd been shuffling along with my head hanging out to the right and down (and dragging along my right-side severe muscle pain.) It hurt, was disgusting and frustrating. My head was out of alignment with my spine. I just knew my head wasn't screwed on right! One of the causes is muscle atrophy. In my case, the muscles couldn't hold the head in place. Lyme certainly can cause muscle atrophy.
Lie flat on a bed, shoes on or off and have someone check: if a leg is shorter even by a little--see an atlas orthogonal therapist, for proper assessment. For the list of doctors see www.atlasorthogonality.com.
Regular chiropractors may help you--some may make it worse. Every time you have a conventional chiropractic adjustment, you're joints are damaged a bit.
Lying on a table, my special chiropractor moved my head a particular way according to what x-rays showed and did the quick percussion wave treatment, realigning my head. She helped me sit up. I put two "even" feet to the floor--and was stunned. Silence ... Silence! I'd forgotten the sound of silence.
I went back and forth between my myofascial therapist who also ``worked'' my atrophied muscles and the atlas orthogonist, who sometimes needed to realign my head, followed by lying on her roller table to help adjust my entire spine. It's feels like being on a ship at sea, rolling with big waves.
Now I walk upright, balanced. This helped everything. Untreated, this condition can cause pain, stress, frustration, digestive problems, a weakened immune system, and more.
Your local atlas orthogonal chiropractor may provide a dandy referral to a good myofascial therapist.
All of these methods brought true healing, before Lyme treatment. Books I've mentioned may be found at public libraries.
5.] Tinnitus is a symptom of Lyme disease. My hearing also wavered for a year. A year and seven months after the BAM of Bell's palsy caused by Lyme, I had my Eureka! moment, realizing I had chronic Lyme. Now, after a year of prolonged, high dose, multiple Lyme antibiotics (and more to come) I can't remember the last time I had ringing between my ears. Thank goodness!
On the Internet are many references to tinnitus, most being metabolic mayhem always present in disease, as is inflammation. Whether you've been able to win your fight for getting prolonged antibiotics, or not--so far--I encourage you to tend to also optimizing conditions you have as a result of Lyme, or had before you got Lyme.
For example, is your GI tract humming or hurting? What can be done to better it? Perhaps a gastroenterologist could help. Surf the Internet and check library and bookstore shelves.
Tinnitus can be an accumulation of causes. You could discover other trouble you never had a name for. Caring for those conditions optimally improves Lyme recovery.
Here are other causes of tinnitus: wax/dirt build up in the ear canal (use off-the-shelf liquid remedies,) ear or sinus infections, allergic reactions, specific foods rich in salicylates, aspartame, too much caffeine, noise exposure, noise-induced hearing loss, meds interfering with other meds (check the pharmacy information,) vascular anomalies (a pulsing sound; pulsatile tinnitus, pulsatile tinnitus with Lyme) high blood cholesterol, intracranial hypertension, head injuries, dental procedures, mercury fillings, lead poisoning, TMJ (temporo-mandibular joint.)
Some drugs can cause it: Aleve, Ibuprofen, aspirin, antidepressants, quinine, oral contraceptives, vancomycin, erythromycin (this begs the question: clarithromycin?)
Also, B12 deficiency (relieved with shots of B12,) any neurological infections, potentially any metabolic disorders, autoimmune diseases, chemotherapy and more. Hyperacusis information may help.
Also, structural defects of the inner ear or from the ear to the brain may cause noise. Tinnitus can accompany ostosclerosis, Meniere's syndrome, auditory nerve lesions and growths/tumors.
Tinnitus can accompany Lyme hearing loss, Lyme sound sensitivity and Lyme stress (for instance, being sensitive to the noise of hearing more than one conversation at a time and having difficulty with Lyme multitasking to understand what's being said--is stressful.)
Bell's palsy, Lyme encephalopathy and fibromyalgia can cause tinnitus. Your awareness of your tinnitus can be stress-related.
Having a herxheimer can make tinnitus worse or exacerbate it.
Many of us have to fight for Lyme treatment, housing and more, causing more stress. When no doctor cared, I did what I could to care for myself and to search for other causes. That brought less stress because I was helping myself.
Reducing stress helps in a big way. For example, I drew a line in the sand by telling everybody what's going on inside your head, in no uncertain terms and how they can help. Taking nice Lyme naps helped.
All discussions in this column are for information only and should not be interpreted as medical or other professional advice. Each person is unique and all readers should carefully consider their own personal situation before pursuing any course of action.
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I had horrible tinnitus for over 2+ years and thought I would never be free of it. It has been gone 100% now for over 7 years since IV Rocephin- thank goodness*)!*)!!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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bejoy
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Member # 11129
posted
Such a great wealth of information here. Thanks!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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quote:Some drugs can cause it: Aleve, Ibuprofen, aspirin, antidepressants, quinine, oral contraceptives, vancomycin, erythromycin (this begs the question: clarithromycin?)
There's a good chance; I had some tinnitus while on clarithromycin, but of course, I'm not totally sure it wasn't all from Lyme or coinfections!
It is well known the metronidazole ('flagyl') can cause tinnitus. For this reason I asked my doc to prescribe tinidazole (which, despite the name, isn't known for causing tinitus, though it has similar function as metronidazole....) instead of metronidazole, to break up and zap the cystic forms.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Me, too. Great article Daise- it's been a real pleasure having you here, you add a lot!!!!!!!!
I thought I would never ever have blessed peaceful silence again. SILENCE is under-rated! Blessed silence.
I literally had times where it almost drove me CRAZY, where I felt I was just going to LOSE my MIND because it wouldn't STOP it's keening shrieking buzzing whining- sometimes it would be so loud I could barely think- and it would NEVER stop not even when I woke up from the first second always in sleep always waking there it would be- never ever gone not for one second in over 2 years- it was terrible-
I would have sold my soul to the devil for five minutes of silence.
Luckily it didn't come to that!!!
Now I take it for granted all the time except when I read a thread like this & remember!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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daise
Unregistered
posted
Californialyme,
Thanks. I was close to your posts, right off, because you knew what you were talking about.
Ya--it does wedge a monkey wrench into the ol' thinking gears.
It's like a cast of relatives, all chattering, all at once, but all you hear is the background of it and nobody has a thing to say ... but boy do they say it.
Then you try to sleep with all of them. Wake up with all of them. They're standing in line with you at the supermarket. They're everywhere!
I was noticing patterns in the chaos, for cryin' own loud.
Ya. Ya. When you never get a break from it ... devil come hither ...
No--go away, go away!
Then comes a lovely treat. Blessed silence.
There is a sound to silence. It lets in subleties of other sounds, that you never would have noticed. You can pick these sounds out of the silence, like stopping to smell the roses. Then you notice other sounds ...
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Great article. Thanks.
If you wonder if certain drug is hurting your years, you can use Google or PubMed to search that drug with the term "ototoxic"
some may be more toxic to the vestiublar system, so after " drug name, ototoxic" you can search "drug name, vestibular, toxic"
While some people seem to do okay with a drug that may be ototoxic, others can have hearing damage.
B6 may help avoid problems with minocycle, but it should be balanced with all the B vitamins.
If the drug is not ototoxic and raises the tinnitus, it could be part of a herx reaction. Backing down the dose, or liver detox support may be helpful.
If a drug that is ototoxic raises tinnitus for you, but not others, you may have a predisposition or weaked vesibular system. I'd say get expert advice, but if you don't have a LLMD, that is often not possible. Be very careful while on abx as hearing damage can happen at lower decibels than usual.
KEEPING YOUR EARS SAFE - Using ear plugs for heavy duty muffs while running the vacuum, even your hairdryer (ear plugs, then, not muffs, of course). Teaching the entire family to protect their ears will help protect their ability to think and to thrive. For when the vestibular system is damaged, it affects all other functions.
Ear plugs at movies and concerts, too. Some find sitting out the commercials and previews in the lobby is helpful, if not required. Ask mgt to lower volume if you can. The more we speak up, perhaps, the less damage our ears will encounter.
In-the-ear pods have been connected to hearing damage. The author of THE MOZART EFFECT, I recall reading, believes that any headphones, especially while exercising, can pose a risk to delicate ear nerves at such close range to the speakers, even at moderate volume.
==========
Magnesium/Calcium/Zinc may be helpful as if the NMDA receptor outpower the GABA receptors, tinnitus can be a result.
The CFIDS Chronicle has also published much on this. No specific links but you can google NMDA, CFIDS
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www.vrp.com Vitamin Research Products - see the articles they have good information on tinnitus. Vinpocetine helps some. Info. from their library.
- Aspartame (nutrasweet) and MSG (by many names) can cause tinnitus in some people. these are toxic and addressed in excitotoxin book further down. --
A gluten-free diet may help. Addressing other foods that may trigger could also help. In addition to wheat, corn, potato, sugar, beer are common triggers of tinnitus. Again, if the root cause can be addressed, the foods may no longer be a problem. But advoiding such foods until it's better can help heal.
- A note about MRI - The magnets clashing together for an MRI can be very hard on people with tender ears. Unless it's absolutely necessary and would have a clear advantage over other diagnostic imaging, from my own experience, I would avoid an MRI as even with ear plugs, it can be very loud and jarring. I have had permament damage from MRIs, even one that was supposed to be very quiet (ha!)
I also think the vibrations for the entire body, as well as the noise assault, has set me back regarding the adrenal dysfunction. It has taken months to get over the feeling of assault on my entire system. Yet others barely notice it.
The earplugs attached to a stethescope (where they talk to you though it ) often will nt seal properly. Ear plugs must be totally sealed to work. If you are gettting an MRI and you need to re-seal ear plugs. Stop. let them wait. You have to live withy your ears forever.
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[ 21. November 2007, 06:10 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I strongly advise the best lyme/TBD treatment possible as so many patients report vestibular symptoms clear with lyme treatment. In the meantime, the sites below may help.
Prevention, too, is key with many conditions regarding the ears. Tinnitus, and other vestibular conditions, can be the result of noise damage or physical trauma. -
The Vestibular Disorders Association (VEDA)
information, resources, support, and advocacy for people with dizziness, vertigo, and imbalance . . .
my note: All about collapsed tolerance to sound. Does even the rustling of a paper bag send you to the moon? A car door closing a block away? Someone's voice ? This is very common with lyme and many who are lucky to get treatment find this disappears. This site will help with get you through it.
SHHH - Self Help for Hard of Hearing is another group that can be found by a Google search.
====================
If you see any physical or occupational therapist for vestibular issues, be SURE they also are LL. Many are not and are really thrown by the complex symptoms.
===================
Oto-neurologists or Neuro-otologists are doctors with training in both vestibular and neurological systems, one the ear more, the other neuro more, but I forget which is which. -
ENT - Ear, nose, and throat doctors. - Audiologists can help assist with testing, vestibular training and aids. There is something called "tuners" - or similar name that can retrain the ears to disregard the tinnitus.
An audiologist can also help you select custom made ear plugs for your needs. Many type. I advise not to expect a miracle as nothing can make it quiet due to bone conduction. However, ear plugs can help a lot.
An audiologist may also be able to help with maskers to wear in the ears. A specially-trained expert would work with you on this by changing the tone at prescribed intervals of time.
-
CRANIAL - SACRAL THERAPY - or other bodywork can help too, as the article starting this tread details. Cranial-Sacral requires special training. Some are quicker/faster. Some are slow and gentle. For me, I will never do the quick twists again. Never. However, the slow, gentle cranial-sacral helps.
--
P.T. mostly to regain balance. If our inner ear system is off, we use our eyes more. A PT trained with vestibular matters will know how to teach to integrate as much as you can. For instance, when I kept falling over, it never occured to me to feel the bottom of my feet or watch the floor where I was going. PT helped there.
there are some physical therapists who have special training with vestibular stuff. (Of all the professionals, though best to see someone who also really knows about lyme. People with lyme seem to have a whole different mix that many professionals in this area have never seen - in my experience.)
============================= AIT
Due to volume or startles, some auditory integrative training (AIT) may be damaging for some people - see the hyperacusis network for info. on that. I would advise those with lyme to AVOID AIT.
If hyperacusis is due to infection or damage to the nerve coating, loudness training can be harmful. A LL professional might have some suggestions, tough, on the safe kinds of sound training or exposure.
==================================
Tomatis or other music brain training may be very good, (different from AIT) - you control the volume and loudness is not forced.
Tomatis Multi-system developmental disorder, autism, pervasive Clinics in New York City, New York and Bethesda, Maryland use the Tomatis System to treat apraxia in children.
www.tomatis.net - the bright green background at this site is impossible to read. Best to go to the top source, but if you can't read it, try:
TOMATIS Dr. Alfred A. Tomatis is a French ear, nose, and throat doctor who made astonishing medical and psychological discoveries that led to audio-psycho-phonology ...
A google search will yield more. Perhaps PubMed, too.
there is another doctor, from Spain, I think, beginnig with an "S" who is similar. Some audiologists know about this sort of music training. It is very precise with different bands and the technology.
==================================
QiGong and Tai Chi are slow movement exercises that can help retrain if balance is affected. Excellent for everyone, everything.
posted
My ears still ring and swoosh, even with treatment. I thought the mino would kick it because I finally heard things draining with that abx (Rocephin helped my sinuses), but it was short-lived.
Found out this is the culprit to my chronically infected ears - I even burst my left eardrum at one point:
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