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The Dizziness Group: For those who are floating, boating, falling or flying


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Hey Floaty Boaters and Push-arounders  :laugh:

I hope your new year day was great. The fireworks and gun shots drove me crazy in my neighborhood. Last night was more of it but not as much or for as long. Good riddance fireworks until July 4th! Perhaps by then I'll be much healed.

Anyway I wanted to report some good news. Yesterday I started vestibular therapy. I'm impressed with these guys because they come to your house. They're aware that most of patients with dizzy boaty push pulling issues can't drive or even ride in a car. Initial tests were given to me with almost all of them in normal ranges concerning coordination of balance in conjunction with the eyes involvement. I will be receiving therapy to see what can be helped for 2 days a week for 6 weeks then go from there. The one session yesterday was short but it wore me out. I'm optimistic that it will help. I'll keep you posted.

Once again Happy New Year! Here's to healing and joy of life!  :-*

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I personally think the dizziness and boaty feeling is nervous/anxiety related.  Try to calm yourself down and it should subside.
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For anyone who is interested in reading information, rather than opinions, on how benzodiazepines and antidepressants can affect hearing and balance, here's a paper on OTOTOXICITY. There are many, many drugs that can adversely affect hearing and balance, and this paper lists just some of them. I'll just put an excerpt here, but the full paper is well worth reading. It could be a good one to share with those who don't understand what ototoxicity is and why so many medications can cause problems with hearing and balance.

 

https://hearinglosshelp.com/blog/ototoxicitythe-hidden-menace-part-i-lives-in-upheaval/

 

What Is Ototoxicity?

 

To many doctors, ototoxicity just means hearing loss or tinnitus. Others consider only drug side effects that affect the inner ear as being ototoxic. However, Stedman’s Medical Dictionary11 defines ototoxicity as the “property of being injurious to the ear.” Therefore, any side effect of a drug that damages our ears in any way is ototoxic whether it damages the outer, middle or inner ear.

 

How Common Are Ototoxic Side Effects?

 

How common are ototoxic side effects? The short answer is, “No one really knows.” We apparently only see (and record) the tip of the iceberg.

For extremely ototoxic drugs such as Cisplatin (used in the treatment of cancer), virtually everyone that takes this drug ends up with hearing loss. According to some researchers, not a single person escapes its ravages—100% of the people taking Cisplatin damage their ears.5 The resulting hearing loss “is usually irreversible (permanent).”8

 

Another very ototoxic class of drugs are the AMINOGLYCOSIDE antibiotics. Researchers estimate that between one and four million Americans receive AMINOGLYCOSIDE antibiotics (such as Gentamicin, Neomycin, Tobramycin) each year.7

 

According to one study, a person has a 25-30% chance of incurring hearing loss from taking any of the AMINOGLYCOSIDES.9 Another study pegs the figure at 63%.5 This means that between 250,000 and 1,200,000 people (and maybe as high as 2,520,000 people) in the USA incur hearing losses each year from taking just this one class of drugs.

 

Add to these figures the untold numbers of people who experience other side effects from taking these same drugs—such as tinnitus, dizziness, vertigo and numerous other cochlear and vestibular (balance) problems—and you have a figure of alarming proportions.

 

It is even more alarming when you realize we are just talking about a handful of ototoxic drugs in 2 of the more than 150 classes of ototoxic drugs!

 

Ototoxic Drugs are Everywhere!

 

There are at least 743 drugs that are known to be ototoxic.4 Here are just 84 of them. This gives an inkling of just how all-pervading ototoxic substances are in the medications we take without having a clue that these drugs may be harming our ears.

    ACE INHIBITORS such as Enalapril (Vasotec),2 Moexipril Univasc), Ramipril (Altace)

    ACETIC ACIDS such as Diclofenac (Voltaren), Etodolac (Lodine),Indomethacin (Indocin), Ketorolac (Toradol)

    ALPHA BLOCKERS such as Doxazosin (Cardura)

    AMINOGLYCOSIDES such as Amikacin (Amikin), Gentamicin(Garamycin), Kanamycin (Kantrex), Neomycin (Neosporin), Netilmicin (Netromycin), Streptomycin, Tobramycin (Tobradex)

    ANGIOTENSIN-2-RECEPTOR ANTAGONISTS such as Eprosartan(Teveten), Irbesartan (Avapro)

    ANTI-ARRHYTHMIC DRUGS such as Flecainide (Tambocor),Propafenone (Rythmol), Quinidine (Cardioquin), Tocainide(Tonocard)

    ANTI-CANCER DRUGS such as Buserelin (Suprefact), Carboplatin(Paraplatin), Cisplatin (Platinol), Vinblastine (Velban), Vincristine(Oncovin)

    ANTI-CONVULSANT DRUGS such as Carbamazepine (Tegretol),Divalproex (Depakote), Gabapentin (Neurontin), Tiagabine(Gabitril), Valproic acid (Depakene)

    ANTI-MALARIAL DRUGS such as Chloroquine (Aralen), Mefloquine(Lariam), Quinine (Legatrin)

    ANTI-RETROVIRAL PROTEASE INHIBITORS such as Cidofovir(Vistide), Ganciclovir (Cytovene), Ritonavir (Norvir)

    BENZODIAZEPINES such as Diazepam (Valium), Estazolam(ProSom), Midazolam (Versed)

    BETA-BLOCKERS such as Atenolol (Tenormin), Betaxolol(Betoptic), Metoprolol (Lopressor)

    BICYCLIC ANTI-DEPRESSANTS such as Venlafaxine (Effexor)

    CALCIUM-CHANNEL-BLOCKERS such as Diltiazem (Cardizem),Nifedipine (Adalat), Nisoldipine (Sular)

    COX-2 INHIBITORS such as Celecoxib (Celebrex), Rofecoxib(Vioxx)

    H1-BLOCKERS such as Cetirizine (Zyrtec), Fexofenadine (Allegra)

    IMMUNOSUPPRESSANT DRUGS such as Cyclosporine (Neoral),Muromonab-CD3 (Orthoclone OKT3), Tacrolimus (Prograf)

    LOOP DIURETICS such as Ethacrynic acid (Edecrin), Furosemide(Lasix), Torsemide (Demadex)

    MACROLIDE ANTIBIOTICS such as Clarithromycin (Biaxin),Erythromycin (Eryc)

    OPIATE AGONIST DRUGS such as Codeine (Codeine Contin),Hydrocodone (Vicodin), Tramadol (Ultram)

    PROPIONIC ACIDS such as Flurbiprofen (Ansaid), Ibuprofen(Motrin), Naproxen (Anaprox)

    PROTON PUMP INHIBITORS such as Esomeprazole (Nexium),Lansoprazole (Prevacid), Rabeprazole (Aciphex)

    QUINOLONES such as Ciprofloxacin (Cipro), Ofloxacin (Floxin),Trovafloxacin (Trovan)

    SALICYLATES such as Aspirin, Mesalamine (Asacol), Olanzapine(Zyprexa)

    SELECTIVE SEROTONIN REUPTAKE INHIBITORS (SSRIs) such asFluoxetine (Prozac), Fluvoxamine (Luvox), Sertraline (Zoloft)

    SEROTONIN-RECEPTOR AGONISTS such as Almotriptan (Axert),Naratriptan (Amerge), Sumatriptan (Imitrex)

    THIAZIDES such as Bendroflumethiazide (Corzide), Indapamide(Lozol)

    TRICYCLIC ANTI-DEPRESSANTS such as Amitriptyline (Elavil),Clomipramine (Anafranil)

 

Ototoxic Side Effects

 

Ototoxic side effects can damage our ears in many different ways. You may experience one, several or no side effects from taking any given drug. The average ototoxic drug exhibits about 3.5 ototoxic symptoms.4

 

Here are a number of the ototoxic side effects you could experience. When you know which ototoxic side effects can occur, you can watch for them. If they do occur, immediately contact your physician, stop taking the offending drug (with your doctor’s consent—of course) to try to limit the damage to your ears.

1. Cochlear side effects

 

    Tinnitus: Tinnitus, commonly called “ringing in the ears,” is the number one indicator that you may be damaging your ears from an ototoxic drug. At least 447 drugs are known to cause tinnitus.4Tinnitus can manifest itself as a wide variety of sounds. It may be a ringing, roaring, beating, clicking, banging, buzzing, hissing, humming, blowing, chirping, clanging, sizzling, whooshing, rumbling, whistling or dreadful shrieking noise in your head. It may also sound like rushing water, radio static, breaking glass, bells ringing, owls hooting or chainsaws running.3

 

    Hearing loss: More than 230 drugs are known to cause hearing loss.4 Hearing loss can range from mild to profound and may be temporary or permanent. One of the insidious things about ototoxic drugs is they generally first destroy hearing in the very high frequencies which are not normally tested (those above 8,000 Hz). Thus, you’re not even aware you are losing your hearing until it is too late to do anything about it.

 

    Distorted hearing: Some drugs, instead of causing hearing loss (or in addition to causing hearing loss), cause hearing to be distorted so we do not understand some (or much) of what we are hearing.

 

    Hyperacusis: Hyperacusis is a condition where normal sounds are perceived as being much too loud. It is as though the body’s internal volume control is stuck on “high.” At least 38 drugs can cause this condition.4

 

    Feelings of fullness in your ears: You can experience this feeling for a few reasons. One, because your ears really are blocked by a middle ear infection or by earwax. Two, because your ears feel“blocked” because of sudden hearing loss. Three, exposure to loud sounds can result in a feeling of “fullness” too.

 

    Auditory hallucinations: At least 8 drugs can cause you to hear phantom sounds—voices and music that are not there. Another 165 drugs can cause hallucinations, some of which may be of the auditory variety.4 Most of these hallucinations seem to be the result of a damaged auditory system rather than the effects of a mental illness.

 

2. Vestibular Side Effects

 

    Dizziness: Dizziness is the most common ototoxic symptom. At least 588 drugs have this ototoxic side effect.4

 

    Vertigo: Vertigo is the perception of movement (normally a spinning sensation) when the body is really not moving. At least 432 drugs are known to cause vertigo.4

 

    Ataxia: Ataxia is the loss of your ability to coordinate your muscles properly and can be a result of a damaged vestibular system. As a result you may walk with a staggering gait, just as though you were drunk. At least 288 drugs can cause this side effect.4

 

    Nystagmus: Nystagmus is abnormal rapid rhythmic back-and-forth involuntary eye movement, usually from side to side. Although technically an eye problem, it fundamentally is the result of a damaged vestibular system. At least 102 drugs can cause this side effect.4

 

    Labyrinthitis: Labyrinthitis is a catch-all term that simply means something is wrong in your inner ear (cochlear and vestibular systems).

 

    Loss of balance/equilibrium disorder: Some drugs cause a person to lose their balance. These terms too, are mostly catch-alls for various kinds of balance conditions.

 

    Oscillopsia: Oscillopsia is “bouncing vision.” This is the result of damage to the vestibular system such that it no longer works together as the vestibulo-ocular reflex. Oscillopsia can result when your vestibular system in both ears is severely damaged.

 

    Emotional problems: When you lose much of your sense of balance, emotional problems such as anxiety, frustration, anger and depression can surface.7 Your feelings of self-confidence and self-esteem may plummet.

 

    Fatigue: Damage to the vestibular system can result in exhaustion, because you now have to consciously work at maintaining your balance.

 

    Memory problems: Memory problems can result because areas of your brain that were previously used for thought and memory, must constantly work on keeping you balanced. As a result, you may grope for words, forget what was just said, be easily distracted or have trouble concentrating.

 

    Muscular aches and pains: Another seemingly-unlikely result of vestibular ototoxicity are muscle pains due to failure of the vestibulo-spinal reflex (the reflex dictating automatic muscle changes in response to changing movement). If the reflex fails, you have to consciously control it. You may make your muscles rigid as you strain to keep your balance.

 

    Nausea: Nausea is a relatively common side effect of vestibular damage that results from your brain’s confusion over vestibular sensory inputs.

 

    Visual problems: A host of visual problems can result if the vestibulo-ocular reflex (the reflex that stabilizes your eyes in space) is damaged. As a result, you may have trouble reading since everything seems blurry or fuzzy. You may have trouble focusing your eyes—particularly on moving or distant objects.6

 

    Vomiting: Vomiting is a common result of a damaged vestibular system. Often vomiting and vertigo go together.

 

    Vague feelings of unease: Sometimes you can’t put your finger on exactly what is wrong, but you feel vaguely uneasy. You may feel that things seem wrong or unreal.7 This too, can be a result of a damaged vestibular system.

 

3. Central Nervous System (CNS) Side Effects

 

    Central auditory processing disorder: Sounds may enter our ears and be processed correctly, but these sound signals may be delayed or scrambled after they leave our inner ears. This scrambling can occur as the sound signals are processed by the neuronal networks that make up our auditory nerves, or in various parts of our brains. When this processed sound reaches the conscious levels in our brains where we “hear,” we may hear a bunch of gibberish. This is known as a central auditory processing disorder. Several ototoxic drugs/chemicals have this effect.

 

4. Outer/Middle Ear Side Effects

 

    Ceruminosis: Some drugs cause excessive ear wax production. This excess wax can block our ear canals and cause temporary hearing loss.

 

    Ear pain: Medically called otalgia, ear pain is typically the result of middle ear infections. 154 drugs have ear pain associated with their use.4

 

    Otitis externa; O. media: Otitis is typically an opportunistic infection of the outer (O. externa) or middle (O. media) ear. Many of the drugs listed as having otitis as an ototoxic side effect do not directly cause these conditions. Rather, these infections come in and take over when an opportunity presents itself—i.e. an ototoxic antibiotic killing off the “good bacteria” in the ear canal, leaving it wide open to an opportunistic invasion of “bad bacteria.” 138 drugs are associated with otitis.4

 

Risk Factors

 

Some people take ototoxic drugs with seeming impunity. Others take one little dose, and wham—there goes their ears. Why? The short answer is that we are all different.

 

Each person (patients and professionals) is a unique biological case study! No two are exactly the same. Therefore, it should be no surprise that we vary in our sensitivity to ototoxic drugs.

 

Researchers have identified a number of factors that increase the risk of our having an ototoxic reaction when taking certain drugs. Here are 20 of the risk factors (in no particular order of importance).

    You are very young—including unborn children.

    You are a senior (over 60 years).

    You have certain hereditary (genetic) factors that make you more susceptible than the general population. This is particularly true if you take AMINOGLYCOSIDE antibiotics.

    You already have a sensorineural hearing loss, balance problems or some other form of pre-existing ear damage.12

    You have had previous ear damage (hearing loss) from exposure to excessive noise.

    You have problems with your kidneys. For some reason, people with kidney problems have an unusually high incidence of hearing loss, even without drug use.10

    You are extremely sensitive to drugs or have a low tolerance for drugs.

    You have had ototoxic reactions to drugs in the past. Not only does the risk increase, but the resulting ototoxic damage has a tendency to be more severe and is more likely to be permanent.7

    You have previously used ototoxic drugs, or you have taken repeated courses of the same ototoxic drug.

    You have taken certain drugs for a long time—especially if you have taken a drug for longer than the manufacturer recommended.

    You can be at higher risk if an ototoxic drug is not administered properly—i.e. larger than recommended dose, higher that recommended cumulative dose, faster dose than recommended (injection or intravenous).7

    You have been given an inappropriate dose—i.e. a child given an adult dose, or an overweight person given a dose based on total weight rather than on lean body weight (especially true if taking an AMINOGLYCOSIDE antibiotic).7

    You are dehydrated.

    You have taken ototoxic DIURETICS at the same time as other ototoxic drugs or if you have used or are using two or more ototoxic and/or nephrotoxic (toxic to the kidneys) drugs at the same time.

    You have had previous ear infections.

    You are generally in poor health.

    You have abnormal laboratory values such as reductions in serum albumin, serum red blood cells, hematocrit, hemoglobin or you have rising serum creatinine levels.7

    You have had radiation treatments on your head or ear.6

    You have bacteremia (bacteria in the bloodstream).7

    You have either eye or proprioceptive (balance) problems. This increases the chances that you will have a more serious result on your life-style if vestibular ototoxicity does occur.7

 

Reduce The Risk-Here’s How

 

You cannot do anything about certain ototoxic risk factors such as your age or your genetic makeup. However, there are still some things you (and your doctor) can do to lessen your risk of having an ototoxic reaction from taking certain drugs. Here are some things you and your doctor can do.

 

    Be aware of the early warning signs of ototoxicity. They are (in order of frequency): you feel dizzy; your ears begin ringing (tinnitus); your existing tinnitus gets worse or you hear a new kind of tinnitus sound; you feel pressure in your ears (unless you have a head cold); your hearing gets worse or begins fluctuating; or you develop vertigo (spinning sensation).

 

    Tell your doctor you are hard of hearing, especially if you have a sensorineural hearing loss and/or suffer from balance problems. Also, let him know if you have tinnitus.

 

    Always discuss possible side effects with your doctor before you begin a new medication.

 

    Follow your doctor’s dosage instructions exactly. At the same time, make sure your doctor does not exceed the drug manufacturer’s dosage instructions when he prescribes drugs for you.

 

    Use the same pharmacy for all your prescriptions so they will know all the drugs you are taking. That way they can advise you of any known dangerous drug combinations.

 

    Always read the labels on over-the-counter medications and particularly watch for ototoxic side effects.

 

    Drink plenty of fluids so you don’t get dehydrated. This is especially important if you have a fever or are taking loop diuretics.

 

    If you have kidney problems, have your health care professionals carefully monitor your kidney function and report abnormalities immediately. Your doctor needs to know how well your kidneys are working before he prescribes various medications.

 

    Avoid taking multiple ototoxic drugs at the same time.

 

    Avoid noisy environments for at least 6 months after you have completed a course of an AMINOGLYCOSIDE antibiotic or platinum compound such as Cisplatin.8

 

    If you are beginning treatment with an ototoxic drug such as any of the AMINOGLYCOSIDE antibiotics, LOOP DIURETICS or platinum compounds such as Cisplatin, it is important that you have a baseline high-frequency audiogram done before you begin treatment and then serial high-frequency audiograms (testing those frequencies above 8,000 Hz) during and after drug therapy.

 

    If you have had vestibular (balance) problems from taking any drugs, be very careful not to damage your vestibular system further by taking drugs known to damage your vestibular system.

 

When you are aware of the many drugs that can damage your ears and the many risk factors that can make you even more susceptible to ototoxic side effects than the general population, you can take steps to protect your precious ears. You will then be in the position to take control and make informed decisions about your health care.

 

For example, “Joan” takes Celecoxib for her arthritis. When she takes it, her tinnitus gets louder, but her arthritis problems improve. She chooses the tinnitus over the arthritis pain. That is her choice and she is content to live with it.

 

“Harold,” on the other hand, began taking Amitriptyline and soon noticed he had severe tinnitus. He didn’t like this one bit and wrote to me for help. I suggested the Amitriptyline may be causing his tinnitus. With his doctor’s permission, he stopped taking the drug. Twelve days later, he joyfully reported that his tinnitus went away. That was his choice. He is happy he made it.

 

When it comes to the health of your ears, you, too, have a choice. Don’t let ototoxic drugs flip your world upside down!

 

    (First published in Audiology Online and Healthy Hearing December 1, 2003.)

 

____________________

 

Now read Ototoxicity—The Hidden Menace, Part II to learn even more about ototoxic drugs and how you can protect yourself from their nasty side effects. Although written specifically for audiologists, Part II is still easy-to-read, and contains valuable information that will help anyone concerned about ototoxic drugs and their side effects.

 

____________________

 

The information in this paper was taken from the second edition of the book Ototoxic Drugs Exposed by the same author. To learn more about ototoxicity in general, or to learn the specific ototoxic side effects of the 877 ototoxic drugs, 35 herbs and 148 chemicals mentioned in this book, get your own copy of Ototoxic Drugs Exposed.

 

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I was diagnosed with horizontal nystagmus decades ago and more recently, memory impairment and amnesia and I have hyperacusis now.  Loud noises never used to bother me too much, but now they do since I got off these poisonous benzo's.  I took AD's for years and they never caused any of these problems.
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Hey Becks! Hey Lapis!

Lapis thanks for the informative post. I hope you're having a good day in a nice window. How have you been doing lately? Excited about the new year?

Becks, unfortunately my boatiness isn't caused by anxiety. I'm very calm all the time. Anxiety was something I had when I became tolerant to the Ambien. When I started tapering it was the first thing to go. Ambien hurt my vestibular system. It hit it hard. That's why I'm dizzy/boaty with ringing ears.  If it was a matter of anxiety/staying calm then I definitely would not have this problem. It has slowly improved so I've started vestibular therapy to see if I can help it to compensate better. But I greatly appreciate your support and suggestion. Big hugs to you. I'm wishing you a happy year this year with improvements or finally healing.  :thumbsup:

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I saw a therapist early on in this process to get support and to consult with her about the dizziness, i.e. to see if it was anxiety-related. She said that the type of dizziness I was describing and the patterns it followed (and continues to follow) don't reflect anxiety. So, no, it's not anxiety-related in my case. 

 

Please read the document I just shared from top to bottom. And read any of the other studies, papers and articles I've been sharing about the adverse effects of medications on the vestibular system for the last many years. These are biological effects of medications. There can also be hormone-related effects on the vestibular system, a topic about which I've also posted a number of papers. And read a bit about Mal de Debarquement Syndrome as well. We've had multiple discussions about that around here over the years as well.

 

Genetics play a huge role in how we metabolize medications. If anyone read the document I just shared, then you'll see that in there too.

 

 

 

 

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I saw a therapist early on in this process to get support and to consult with her about the dizziness, i.e. to see if it was anxiety-related. She said that the type of dizziness I was describing and the patterns it followed (and continues to follow) don't reflect anxiety. So, no, it's not anxiety-related in my case. 

 

Please read the document I just shared from top to bottom. And read any of the other studies, papers and articles I've been sharing about the adverse effects of medications on the vestibular system for the last many years. These are biological effects of medications. There can also be hormone-related effects on the vestibular system, a topic about which I've also posted a number of papers. And read a bit about Mal de Debarquement Syndrome as well. We've had multiple discussions about that around here over the years as well.

 

Genetics play a huge role in how we metabolize medications. If anyone read the document I just shared, then you'll see that in there too.

 

Lapis,

 

Thank you for the information you posted about ototoxic drugs.

 

My ears started ringing Dec 2018. I was in benzo tolerance unbeknownst to me. I also had 2 attacks of the room spinning within 6 months prior to my ears starting to ring.

 

In the information you provided it says to stop the offending medication as soon as the symptoms begin to avoid damage.

 

I had went to my family doctor, an ENT and an Audiologist who is  the Director or the Dizzyness Dept at the Cleveland Clinic. I told all of them of my ringing in my ears (of course along with the room spins and the vertigo) They all knew I took Ativan. My family doctor was the one prescribing it. Not one of them questioned the Ativan. Not one.

 

I continued to take Ativan for 6 more months until I stopped cold turkey.

 

Imagine if I would have stopped at the first sign of symptoms? How there could have been less ramifications?

 

I can remember with great detail the looks and mannerisms of all 3 physicians when we discussed the vertigo and ears ringing. The vestibular tests were normal. They had looks of cluelessness and attitudes of arrogance. Especially the ENT. He was the worst. He told me to take Meclizine like ever 6 hours every day. What a fool. I am so glad I knew better than to do that. I had already knew enough about vertigo from my own research and reading of books that the Meclizine just worsens it over time because it numbs your vestibular system's ability to compensate. Imagine if I took a bunch of meclizine AND the Ativan? Thank God I did not. Unfortunately, not one of these books I read mentioned that benzos could cause this. I did not start to solve the mystery until I looked up benzodiazepines and withdrawal.

 

All 3 of those physicians addressed the vertigo. When I told them about the tinnitus they literally ignored it.

 

Both tinnitus and dizziness are listed in the side effects of Benzodiazepines in the FDA prescribing info. I also had insomnia for almost the entire time that I was taking them. No one picked up on that either. In fact a nurse practitioner told me to increase the dose. So glad I did not.

 

Scary, clueless, arrogant, reckless practioners.

 

I'm almost 20 months Ativan free, and med free and my ears still ring. I'm also still sensitive to anything that fires up my CNS this includes illnesses such as colds and stuff. God forbid I get something as severe as Covid or even just a fever. I could just imagine the setback. Medications affect me too. It all brings back those vertigo symtoms.

 

Luckily I'm mostly vertigo and boaty free for the last couple weeks. The flu shot set me back in October. It took me two months to recover from that. After being 8 months vertigo/boaty feeling free, the flu shot set me back 2 months. I have now "dug my way out" of that. Luckily the flu shot set back did not bring back all of the other withdrawal symptoms. I had all of "the typicals".

 

The flu shot set back was just a sign that I'm not healed enough yet. I'm not as healed as I thought I was. All it's done is make me fearful of getting sick and needing meds, or surgery.

 

I'm trying to get as much time between when I last took Ativan and any illness or surgery or the need for meds. All I have is staying healthy, avoiding stress, meditating 🧘‍♀️, walking in nature,  eating well. That's all I have. And this pandemic....... my God please make it go away, for everyone's sake. It just makes all of this 1000x harder. The stress. The worry. The "what ifs" . Ugh.

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Thanks for sharing your story, Miss Fortitude. I had similar experiences, and I was on multiple ototoxic medications concurrently. There was certainly an accumulation caused by the types of medication, the length of time I was on the them and the longer half-lives of the individual medications. All of it was missed until rather late in the game.

 

I've shared this document here before, but I will put the link in once again, for anyone who is interested. It's a 2011 European Review article about ototoxic and vestibulotoxic medications. The comprehensive list of offending medications begins on page 610. If anyone wants to print out and share a medical journal article with a medical professional that they're seeing, this might be one to consider.

 

"Pharmacological drugs inducing ototoxicity,vestibular symptoms and tinnitus: a reasoned and updated guide"

 

https://www.europeanreview.org/wp/wp-content/uploads/956.pdf 

 

 

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[f8...]
I just woke up one day with inner ear pressure/pain, hissing inside my head, and hyperacusis. Hissing and hiperacusis are bad enough, but this inner ear pressure/pain is really uncomfortable. It makes me have weird feeling in the sides of my chest, as if someone is pulling me. I hate it that my psychiatrist instead of stopping me from it, encouraged my cold-turkey and then told me I was paying too much attention to the symptoms.
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I just woke up one day with inner ear pressure/pain, hissing inside my head, and hyperacusis. Hissing and hiperacusis are bad enough, but this inner ear pressure/pain is really uncomfortable. It makes me have weird feeling in the sides of my chest, as if someone is pulling me. I hate it that my psychiatrist instead of stopping me from it, encouraged my cold-turkey and then told me I was paying too much attention to the symptoms.

 

It's so unfortunate that those with medical training fail to recognize side effects and withdrawal effects of medications despite all the literature that's out there. I don't know why this isn't covered in their training, or, if it is, why they seem to forget it when one of us is in his/her office.

 

I'm sorry that happened to you, pacenik, but I can relate to what you're saying. I didn't cold-turkey, but I know that the psychiatrist I was seeing thought my dizziness was caused by some psychological issue. In the end, I brought in some literature, and he eventually had to admit that my dizziness likely had a "biological cause". That was the last time I saw him. I later saw another psychiatrist for a couple of appointments, and he validated the iatrogenic cause of my dizziness. It gave me back some dignity.

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Here's a recent study on one of the possible causes of dizziness during menopause:

 

"Assessment of the effects of menopause on semicircular canal using the video head impulse test"

 

https://pubmed.ncbi.nlm.nih.gov/33228415/

 

Abstract

 

This cross-sectional study included early menopausal and late menopausal women aged between 40 and 60 years to evaluate the effects of menopause on semicircular canal function. A video head impulse test (vHIT) was performed for all subjects. Vestibulo-ocular reflex (VOR) mean gains of each semicircular canal and gain asymmetry were compared between groups. Of the 87 subjects, 37(42.5%) were reproductive age 28(32.5%) were early menopausal and 22(25.3%) were late menopausal patients. VOR gain of semicircular canals or gain asymmetry values did not differ between groups. In postmenopausal women, presence of vasomotor symptoms was associated with higher gain asymmetry of the left anterior-right posterior (LARP) plane (p = .01), and presence of balance problems was associated with lower right anterior (RA) VOR gain (p = .01). In conclusion semicircular canal function in postmenopausal women was similar to that in women of reproductive age. IMPACT STATEMENT What is already known on this subject? During menopause, women face potential risks such as dizziness, balance problems, falls and fractures. Postmenopausal patients were tested with dynamic posturography to measure balance before and after oestrogen treatment, and it was shown that balance problems significantly improved with oestrogen treatment. Healthy vestibular system is one of the components for sustaining normal balance. What do the results of this study add? In postmenopausal women the function of the semicircular canals is normal and the balance deficit in postmenopausal women may not be caused by the vestibular system. In this study changes within normal limits were observed in vestibular system of postmenopausal women. What are the implications of these findings for clinical practice and/or further research? Reported balance deficits might have been due to central origin. Further research to differentiate origin of balance deficits are needed. Specific research on symptomatic postmenopausal patients would reveal more information.

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[f8...]

It's so unfortunate that those with medical training fail to recognize side effects and withdrawal effects of medications despite all the literature that's out there. I don't know why this isn't covered in their training, or, if it is, why they seem to forget it when one of us is in his/her office.

 

I'm sorry that happened to you, pacenik, but I can relate to what you're saying. I didn't cold-turkey, but I know the psychiatrist I was seeing thought my dizziness was caused by some psychological issue. In the end, I brought in some literature, and he eventually had to admit that my dizziness likely had a "biological cause".

I put too much trust in physicians. Should've went with the gut feeling.

 

Yes, I've noticed that physicians are only too eager to dismiss iatrogenically injured patients as "headcases". Unfortunately acknowledging that is not a big help to you.

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Pace I'm sorry that happened to you. You're right that they're quick to say we're a head case. I hope this gets better for you soon. Hugs to you.

Hugs to you too Lapis.

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  • 2 weeks later...

Hi Dizzy Buddies,

I recently came across a couple of studies that mention female hormones and vestibular issues. The first one I found is about Mal de Debarquement Syndrome, whose symptoms are the rocking, swaying and bobbing-types of sensations, and the first line says that it mainly affects women in perimenopause. It also mentions GABA, which, as we know, is the main neurotransmitter that benzodiazepines affect. The second study is actually a review of the medical literature where they were searching for studies that connect estrogen and vestibular issues. Apparently, they found more than 200! These ones both speak to me in my particular situation. Have a look here, if you're interested:

 

"Mal de Debarquement Syndrome: A Matter of Loops?"

 

https://www.frontiersin.org/articles/10.3389/fneur.2020.576860/full 

 

 

"Estrogen and neurotological disorders in women//Sexual hormones and neurotological disorders in women"

 

https://pubmed.ncbi.nlm.nih.gov/33351371/ 

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Hey all. Hi Lapis. This is my second week of vestibular therapy. It's going ok. Some of the exercises I can't do yet. My therapist said he went on a cruise and ended up with Mal De EmBArq for 3 weeks. He said because he's a physical therapist he knew what to do immediately. He said if it's not addressed properly it can be permanent in some aspects. I asked him if he thought benzo/Zdrugs cause mal de embarq and he said no but it affects some of the same structures in the ear. Also he said that you can get it even if you never been on a boat. How interesting is that!
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Hey all. Hi Lapis. This is my second week of vestibular therapy. It's going ok. Some of the exercises I can't do yet. My therapist said he went on a cruise and ended up with Mal De EmBArq for 3 weeks. He said because he's a physical therapist he knew what to do immediately. He said if it's not addressed properly it can be permanent in some aspects. I asked him if he thought benzo/Zdrugs cause mal de embarq and he said no but it affects some of the same structures in the ear. Also he said that you can get it even if you never been on a boat. How interesting is that!

 

Yes, exactly. The symptoms of benzo disequilibrium overlap with those of Mal de Debarquement Syndrome (MdDS), e.g. rocking, bobbying, swaying. Those are the descriptive words I often come across. But the causes might be different. There's lots that still not known, so it's not really possible to say what's "permanent" and what's not. That's a heavy word. Whoa.

 

For MdDS, two types have been described in the medical literature that I've been reading: Motion-triggered and Spontaneous or Other-triggered.

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Yes he was saying that when it happens, it needs to be addressed as soon as possible because there is a slight chance that some aspects of it can be permanent if not addressed. He said that permanent possibility is very rare even if the person suffering from it does nothing to help restore compensation. He said the brain will automatically start compensating because balance, knowing your body's position, abilities to change positions and coordination of eyes with movement is important for the body to maintain its safety. The same with your eyes if their injured. They will heal quicker than other body parts because your sight is more important than a broke toe. Because the brain is so complex with billions of neurons, it takes much work to compensate. But it tries to fix it quickly as possible.
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Yes he was saying that when it happens, it needs to be addressed as soon as possible because there is a slight chance that some aspects of it can be permanent if not addressed. He said that permanent possibility is very rare even if the person suffering from it does nothing to help restore compensation. He said the brain will automatically start compensating because balance, knowing your body's position, abilities to change positions and coordination of eyes with movement is important for the body to maintain its safety. The same with your eyes if their injured. They will heal quicker than other body parts because your sight is more important than a broke toe. Because the brain is so complex with billions of neurons, it takes much work to compensate. But it tries to fix it quickly as possible.

 

Yes, he's referring to "vestibular compensation". I've come across that term many times in the medical literature. In my case, I did a total of six months of vestibular rehabilitation exercises (two three-month periods, five times a day....A LOT!), and it didn't touch what I was experiencing. I would be curious to know which specific exercises he recommends. Are you able to describe some of them for us, LadyDen?

 

I just think practitioners need to be quite careful about the use of the word "permanent", especially when talking to patients. The literature I've read lately doesn't use that word, because at this point, there's still much that's not understood and few, if any, studies that follow people long term. They're trying to understand the mechanisms that cause it, which might then lead to ways to ameliorate it.

 

Regarding the importance of vision, I posted a study awhile back that states what percentage of balance is attributed to vision, vestibular and proprioception, because all three are involved in balance. They all have to give the brain the same messages at the same time. According to the study, vision is about 80% of it. I was so surprised to read that! That's huge! Here it is:

 

https://pubmed.ncbi.nlm.nih.gov/30085518/ 

 

 

Physiology Of Spatial Orientation

 

Rachel K. Meeks  1 , Jackie Anderson, Paul M. Bell

In: StatPearls [internet]. Treasure Island (FL): StatPearls Publishing; 2020 Jan.

2020 Aug 11.

Affiliations

Affiliation

 

    1

    22 Area Clinic Camp Pendleton

 

    PMID: 30085518 Bookshelf ID: NBK518976

 

Free Books & Documents

Excerpt

 

Aviation-associated spatial disorientation, as described by Benson, occurs when “the pilot fails to sense correctly the position, motion, or attitude of his aircraft or of himself within the fixed coordinate system provided by the surface of the Earth and the gravitational vertical.” In other words, spatial orientation is the natural ability to maintain body orientation and/or posture in relation to one's environment while at rest and during motion. Humans are naturally designed to maintain orientation while on the ground in a two-dimensional environment. Aviation incorporates a three-dimensional environment and can lead to sensory conflicts, making orientation difficult or even impossible to maintain. Spatial disorientation is a phenomenon that is well known to aviators, but it remains unclearly defined and continues to be one of largest causes of aviation mishaps.

 

Spatial disorientation is achieved through three major sensory sources: visual, vestibular, and proprioceptive. To achieve appropriate orientation the body relies on accurate perception and cognitive integration of all three systems. If visual, vestibular, and proprioceptive stimuli vary in magnitude, direction and frequency the resulting effect can be spatial disorientation.

 

The human eye provides visual and spatial orientation, which is responsible for providing about 80% of the sensory inputs needed to maintain orientation. The vestibular system within the inner ear contributes 15%. Proprioceptive sensory inputs from receptors located in the skin, muscle, tendons, and joints account for 5% of the sensory information used to establish orientation. Complex coordination between these sensory inputs is then translated and interpreted by the brain. Misinterpretation or inaccuracy of these three sources of information can lead to “sensory mismatch,” resulting in a variety of visual or vestibular illusions.

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Yes that's true about eye movement and balance is 80%.  :thumbsup:

Here's the exercises he has me doing.

1. Holding up index cards with two different letters written on them in a single large letter. While keeping focus on one letter turn the head from side to side as if saying no with the head without pausing for one minute. Then using the same card, keeping focus on the letter, nod your head yes ( up and down) for one minute. Start off going slow with head turns. If it doesn't make you more dizzy then speed up a bit.

2.Take both cards, one in each hand at eye level and at arms length, look at the left card without turning your head then turn your head to the card. Repeat with the right card. Taking turns. Then put one card at eye level and the other at waist level. Do the above exercise. Switch arms. Do the above exercise.

3. Find two places in the room you're in and tape one card above your head on an object ( the wall, the top of the door, on a picture on the wall, the cord on the ceiling fan etc). Tape the other card on something lower opposite side of the room as the first card. Starting with the lower card, focus on it with your eyes first then turn head toward the card and keeping your focus walk to it then turn around in a full circle to face it again. With your eyes focus on the second card then turn head towards it. Walk to it keeping focus then turn in a circle until facing it again. Repeat.

4. Put chairs or objects around the room so you can walk between and around them. Like an obstacle course.

5. Using a chair, sit down then stand up. Turn in a full circle looking with your eyes before you make each step to turn. Then sit back down.

6. Using a corner of your kitchen counter (where the two counters meet in a V shape) stand in the V lift one leg eyes open then eyes closed. Try to stay balanced. Repeat with other leg. The V counter corner will catch you if you sway. If you don't have a V counter top then you can put a chair in front of you while you stand in a corner of a room to do the exercise.

7. With a cushion stand on it to balance while focusing on a single object. With the same cushion holding on to something do half squats while keeping the eyes focused on a single object.

8. Walk backwards slowly for 5 steps. Then walk forward 5 steps. When this becomes easy increase to 10 steps.

9. Have someone throw you a ball. Follow it with your eyes until you catch it. The other person should throw it to you center, then left side then right side. Playing catch.

10. Sitting in a chair, pretend you are driving. Eyes look to the left then turn the shoulders and lean forward slightly to see if an imaginary car is coming. Repeat on the right side. Then look down at the imaginary seat belt then up at the rear view mirror.

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Hi LadyDen,

Thanks so much for sharing that detailed list! I recognize a number of the exercises that you describe, since I did a lot of vestibular rehabilitation a number of years ago. Did the person who prescribed them do a bunch of testing and then give you a diagnosis as to the type of problem s/he says that you have? The physiotherapist I saw did a whole series of tests (including the ones using those strange goggles), and then he prescribed the exercises based on what he saw. Do you have nystagmus (that's a type of eye movement that the goggles can help the tester see)?

 

How are you finding the exercises? Are you noticing some changes?

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You're welcome, Lapis. I don't mind posting the exercises and any reports as I go along because it might help someone. Even if it doesn't help the dizziness/ boatiness it's still a great idea to move as much as you can. It makes me feel better "trying" to help myself. It's a great distraction as well. Yes the PT did assessment testing. Most of mine were in normal ranges except identifying letters on an eye chart while moving my head side to side and balance test with eyes closed. I didn't do any test with goggles but I'm doing a laser headgear exercise. There's a headset you put on then keep the laser dot on a certain spot, side to side or tracing around objects while balancing on a cushion. No I don't have nystagmus. He tested me for that.

The exercises are doable but some are difficult when you're a feeling pulling sensation or boaty. I'm very tired and more boaty after each session so far. This is only my 2nd week so I haven't noticed any changes yet except looking downward is better. I apparently was looking down too fast. He's shown me how to do this gradually to not send my head spinning. Using the eyes first then follow with the head slowly. This has made a big difference!

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Yes, it's good to keep moving. I've been keeping up a set of exercises since the beginning, and it's helped me to remain mobile. Going to a clinic and getting some input from someone who's trained in the field can be really helpful in terms of setting you on a good course and giving you guidance. But yes, it sounds like it's early days for you with regards to the vestibular rehabilitation, so all I can say is "Keep up the good work!"

 

It's certainly common for people like us to have "normal" results despite feeling what we feel. Years ago, a neurologist was telling me that "we don't have the means to test the vestibular system to the degree that we would like at the present time." He also said that the vestibular system is finely tuned and highly sensitive, and if it's off a little bit, one can feel dizzy. I really appreciated him telling me those things, and I've reflected on them quite a bit as I've gone through this.

 

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Yes my PT said the same thing about if anything is off ever so slightly then it will cause dizziness. Yes it would be great if there were tests to show which exact culprit is causing the symptoms. I do the best I can as well to stay mobile. On my big wave days, it's nearly impossible. It's frustrating to go for a good walk on the driveway, do some seated exercises and a couple of chores then the next day all you can do is lay down. Every morning is a wait and see day. I'm nearing my 8 month mark this coming Sunday. I'm praying that I start healing more quickly. Once you see that you're healing then you just want it to hurry up.  :laugh:
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Absolutely! It sounds like you're doing a good job at balancing movement and rest while trying to move forward.  :thumbsup:

 

Have you asked your PT whether s/he has seen others with similar symptoms following medication use? I know PTs don't study medications, but they might encounter people who are dealing with side effects and/or withdrawal effects from them. So many meds can cause balance issues.

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