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


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Dizziness and disequilibrium are common symptoms of benzodiazepine withdrawal. Once off the medications and while doing some intensive research on them, I found out that they are classified as “vestibular suppressants” in the medical literature. I couldn’t believe it! That means that the whole time one is taking the medication, that little pill is effectively interfering with the function of the very system required to stay balanced. I also learned that repeated doses could have cumulative effects. In addition, withdrawal from benzos requires the vestibular system – which is finely tuned and highly sensitive – to go through a process of “compensation” in order to normalize. And that can take some time.

 

For some of us, it can take a very long time.  :(

 

From exchanging notes here on BB, it seems I’m not alone in having tired or wobbly legs along with my dizziness. It makes sense if you think about how much extra energy is required to maintain balance when you’re being pushed and pulled this way and that. Many of us also have ringing or hissing in the ears – known as tinnitus – since these medications are “ototoxic” (i.e. toxic to the ears).

 

The word on the street – or online, at least – is that the disequilibrium DOES go away! While I’m waiting impatiently and fearfully to get back to normal, I hope to have a little company along the way. And that is why I’m starting this support group. Please wade into these wavy waters if you’re a fellow “floaty boater”, share your experiences and resources, and offer support to your fellow dizzy dames and dudes. It could be a lifeboat for those of us who feel “lost at sea”!  ;)

 

I’ve come across an array of descriptions of this wacky sensation. Below is a partial list. Please add more if you’re feeling creative!

 

Dizziness

Disequilibrium

Floaty Boat/Floating/Boatiness/Boaty

Vertigo

Falling

Flying

Wobbling

Undulating

Bobbing

Rocking

Swaying

Wooshy

Fishbowl Head

Magic Carpet Ride

Banging Into Walls

Pushed and Pulled

Force Field

Magnetic Force

Moving Floors/Tilting Floors

Resisting the Current

Up and Down Elevators

Pulsating to the Rhythm of the Heartbeat

 

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Here's a link to a website that gives information about vestibular problems. This particular page discusses various medications, and it has some key facts about benzodiazepines.

 

http://vestibular.org/understanding-vestibular-disorders/treatment/vestibular-medication

 

If you're having any trouble with the link, have a look at the first section here:

 

"Can Medication Help Me Feel Better?

 

The use of medication in treating vestibular disorders depends on whether the vestibular system dysfunction is in an initial or acute phase (lasting up to 5 days) or chronic phase (ongoing).

 

During the acute phase, and when other illnesses have been ruled out, medications that may be prescribed include vestibular suppressants to reduce motion sickness or anti-emetics to reduce nausea. Vestibular suppressants include three general drug classes: anticholinergics, antihistamines, and benzodiazepines. Examples of vestibular suppressants are meclizine and dimenhydinate (antihistamine-anticholinergics) and lorazepam and diazepam (benzodiazepines).

 

Other medications that may be prescribed are steroids (e.g., prednisone), antiviral drugs (e.g., acyclovir), or antibiotics (e.g., amoxicillin) if a middle ear infection is present. If nausea has been severe enough to cause excessive dehydration, intravenous fluids may be given.

 

During the chronic phase, symptoms must be actively experienced without interference in order for the brain to adjust, a process called vestibular compensation. Any medication that makes the brain sleepy, including all vestibular suppressants, can slow down or stop the process of compensation. Therefore, they are often not appropriate for long-term use. Physicians generally find that most patients who fail to compensate are either strictly avoiding certain movements, using vestibular suppressants daily, or both."

 

 

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This article pinpoints the particular part of the vestibular system that's affected by benzodiazepines -- in this case, lorazepam:

 

http://www.ncbi.nlm.nih.gov/pubmed/22517315

 

Here's the key sentence in the Discussion section:

 

"Based on the fact that lorazepam increased the affinity of gamma-aminobutyric acid (GABA) for the GABA(A)-receptor and its effects on the utriculi, the site of action seems to be the lateral vestibular nucleus."

 

And this quote from the Conclusion highlights how the different the effects of the medications can be:

 

"Meclizine, scopolamine, and lorazepam selectively suppress specific parts of the vestibular system."

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From the Cleveland Clinic website, here's pertinent information about "Drug-Induced Dizziness", taken from the page at the link below:

 

http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/neurology/dizziness/Default.htm

 

"Drug-Induced Dizziness"

 

"Drug-induced dizziness is common. Given that medication use is ubiquitous and the mechanisms are complex, it is no wonder that so many drugs are implicated in causing dizziness. Certain antiseizure medications (carbamazepine, phenytoin, primidone) and alcohol can cause acute reversible dysequilibrium and chronic irreversible dysequilibrium as a result of cerebellar dysfunction. Sedating drugs (barbiturates, benzodiazepines, and tricyclic antidepressants) can cause a nonspecific dizziness that is believed to be related to diffuse depression of the central nervous system. Antihypertensive medications and diuretics can induce lightheadedness and presyncope by induction of postural hypotension and reduced cerebral blood flow.

 

A number of drugs can produce a characteristic drug-intoxication syndrome with disorientation, memory and cognitive deficits, gaze-evoked nystagmus, and gait and extremity ataxia. This can be confused with more serious disorders. Alcohol is one example of these drugs; it can cause central nervous system depression and cerebellar toxicity, and it can change the specific gravity of the cupula (motion sensor within the ampulla of the semicircular canal). This change in the cupula explains the positional vertigo and positional nystagmus that are noted with alcohol ingestion.

 

Drug-induced dizziness or imbalance can be caused by ototoxic drugs such as aminoglycosides (gentamicin, streptomycin) and cisplatin. Vertigo can ensue if hair-cell loss is asymmetrical. If injury is bilateral and symmetrical, oscillopia (the optical illusion that stationary objects are moving back and forth or up and down) and dysequilibrium may be experienced."

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thank you Lapis for all this imfo!

 

mine did not start right away. i just remember last May it got really bad.

 

im 3 and half yr off benzo. i think it did damage. hope im not stuck w it.

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Lapis 2, the reason i decided to taper as i am doing is due to Tenitus in my left ear. After i spoke to a good ENT about what was going on he told me it was not the Ear causing the trouble the noise is from your brain and he told me he has it also. So after a little research i figured GABA brain Klonopin umm ok off we shall go but i must say since i started the taper i am on the Tenitus is roaring ! and being i have been around chainsaws all my life i figured it was from not wearing ear protection but now believe it was the GABA damage from Klonopin. Feel Better ~CD
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Hey Gardenia and can do, thanks for wading into the waters here! Gardenia, I know you've been struggling for a long time with this symptom too. We're in the "same boat"!

 

And can do, I've had hissing in my left ear pretty much since my dizziness started, which is almost four years ago now. I was still on the meds for another two years. But I know that tinnitus is very common in the general public, and I think that if I have to put up with this symptom for a long time, I can handle it. But I CAN'T handle the dizziness. NOOOOO! It has to go. With the tinnitus, I've noticed that the volume can go up and down. Today it's fairly quiet and I just ignore it.

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Here's another good resource page. This one's from Northwestern University, and it discusses "Dizziness in the Elderly". Clearly, there are numerous things that can cause dizziness, so it's best to ensure that all issues have been checked out.

 

http://projects.galter.northwestern.edu/geriatrics/chapters/dizziness.cfm

 

And this page describes "sea legs", which is what one gets after being on a boat for awhile:

 

http://www.newscientist.com/article/mg18524832.400

 

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Hi Floaty Boaters,

Here's a question: Have you noticed any patterns in your dizziness? Is it the same intensity everyday? Mine varies from bearable to completely unbearable. I don't usually get two unbearable days in a row, and those bearable days give me a little window into the world of feeling better. It seems that my brain "gets it" one day and then doesn't get it at all the next day. I know that healing isn't linear but it seems so extreme. On those better days, though, I feel hopeful.

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Hi Floaty Boaters,

Here's a question: Have you noticed any patterns in your dizziness? Is it the same intensity everyday? Mine varies from bearable to completely unbearable. I don't usually get two unbearable days in a row, and those bearable days give me a little window into the world of feeling better. It seems that my brain "gets it" one day and then doesn't get it at all the next day. I know that healing isn't linear but it seems so extreme. On those better days, though, I feel hopeful.

Your healing so take that as positivity me oh boy once i get back on the boat it should be crazy lol !~CD ps: crawling under trucks and such is not advised but nesasary for me. Have you ever been tested on a tilt table by a god ENT Doc ?

 

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I've just looked it up and it tests for unexplained fainting/syncope. That's not what I'm experiencing so it doesn't make sense for me.
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Lapis, mine was done for dizziness after i had an MRI sooo .. just trying to be helpfull they said or thought that my ear had crystals breaking loose in there breaking loose and messing up my Vestibul system ! Best wishes and healing ~CD

 

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Thanks, can do! Seems like they were looking for BPPV, which has different but very intense symptoms. There's a treatment for that. I was tested for BPPV, but it didn't involve the tilt table. Maybe things are done differently there. All the best to you too!
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Hi Floaty Boaters,

Here's a question: Have you noticed any patterns in your dizziness? Is it the same intensity everyday? Mine varies from bearable to completely unbearable. I don't usually get two unbearable days in a row, and those bearable days give me a little window into the world of feeling better. It seems that my brain "gets it" one day and then doesn't get it at all the next day. I know that healing isn't linear but it seems so extreme. On those better days, though, I feel hopeful.

 

hi lapis

 

mines pretty bad but i avoid it by sitting down. maybe i dont get used to it enough to train my brain to deal w it?? ugh!

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Gardenia, have you tried Vestibular Rehabilitation Therapy? There are physiotherapists who can teach you what to do. Perhaps it's worth trying, if you haven't done so. I've done it a number of times, but the last time was during my withdrawal from Prozac, which caused intense dizziness. It sounds like some people are helped by these exercises. I hope others can chime in with their VRT experiences.
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Lapis,

 

I also have the "dizziness".  It is not really a dizzy feeling but a feeling of being unbalanced.  I successfully tapered off of Ativan quite a few years ago, and that was one of the main symptoms also included high blood pressure spikes. It finally left me about half way through my taper and I did not experience it again until a few years later--when I started drinking a few glasses of wine in the evening.  I know that alcohol works on the same receptors as benzos.  I decided to reinstate to Ativan in order to counteract the withdrawal symptoms (same symptoms that I experienced with Ativan) from the alcohol.  The unbalance is definitely a chemical problem -- either due to benzos or alcohol. They wanted to do a tilt table test with me, but I was unable to do it because I could not stop the beta blocker that I am prescribed for my hypertension.  My doctor told me it would be okay to stop the beta blocker for 5 days!! He obviously didn't  realize that could result in a heart attack.  No one should stop beta blockers abruptly.  That is another long story and I should not be on beta blockers but I listened to my doctor. Stupid I know. 

 

Yes, this is a very scary symptom. I could handle the emotional symptoms, but the BP spikes and unbalanced feelings are too much.

 

Thank you for starting this thread.  I am looking forward to reading more.

Anne

 

 

 

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Lapis and all,

 

Thanks for this thread.  I am not the sufferer, my husband is. He has been so sick with this sx that he can't get on this site (or any for that matter).

 

He has used every description you listed to try to explain to several doctors what he felt like. This is his first and most prevalent sx throughout this ordeal.

 

He did every test that they could do on him. Spun him around, tilted him, put water in his ears, hot and cold, had him sit in a space aged room where they spun a picket fence passed him while counting by threes, reciting the alphabet... Do I need to go on?

 

They sent him to rehab and the therapist had him do every type of movement... Knees to head, tilt head, exaggerated walking, side stepping... You get the picture.

 

Nothing could make him dizzier than he was, sometimes he would not be too bad, but just the movement of a tree branch out a window might catch him and he would be "sick" for hours. Kind of hung over if you will.

 

So that all started in February after just five days on that Ativan.

 

We even traveled to Michigan to an eye specialist that put him in prism glasses... She was sure he had vertical heterophoria. She advised that we slowly (4 weeks!) taper off Ativan and we did.

 

Hundreds and hundreds of dollars later, six pair of glasses, all those tests and two full years from that first pill and 20 months Benzo free and he is still dizzy!

 

He is dizzy everyday. Some days are worse than others. Now depression has set in. I find him sitting in a room staring at a wall. This was a vibrant man who never sat still. He can't eat for fear that will make him sick, he can't travel for fear that will make him sick, he just can't do anything!

 

He has to work everyday, but it is a struggle. So on top of the dizzy, he doesn't sleep, has anxiety, is depressed, has awful thoughts, the list goes on and on.

 

I appreciate you letting me vent! I also appreciate all the articles!

 

I will watch this thread and pray for all of you to get some relief. But I also think all the tests will not help, maybe only relieve your minds.

 

Me and My Better Half

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i started having the undulating symptom very badly when i was about 4 days back from the detox hospital after the c/t and i really thought at first that i was leaving my body and dying. that's how bad it was. and i am not scared to leave my body because i have Out Of Body Experiences all the time and i know how to do that -- but this really scared me because i thought it was over. and some days i wish it was but i'm still here.

 

and i'm 35 months since the c/t and 31 months since the last rescue benzo. i go by those 2 timelines because i had 3 rescue dose's after the c/t that really set me back in a way. i still have the undulating but it's so much better than it was. but i still can't believe i still have it though. i had it so bad that when i was laying on my couch i would literally feel like i was swinging all the way out to the right and then i would swing all the way out to the left. it was another direction of a vertigo. that went on for awhile. month and months. and i also felt like i would be doing a somersault when i was laying down. very severe. so much better though.

 

i'm not going to take any tests for this either. i just don't see the point in stressing myself with tests and doctor right now, maybe later. in windows i never think about tests or doctor's.

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Oh my goodness! Thank you all for telling your stories! I'm sitting here with my mouth hanging open, thinking how unbelievable it is that the symptoms and experiences are so similar. I really appreciate your input. And I can relate to all of you (and to your husband, MAMBH).

 

Here's what I can glean: We're using the same descriptions for our dizziness. We've had A LOT of testing that, in the end, doesn't reflect what we're experiencing. We've tried many different things, including exercises, vision checks/glasses, etc. And we've got non-linear dizziness, i.e. it's not the same every day and it doesn't get better in a linear fashion.

 

I'm trying to using logic here when I say that the body tends toward healing. Also, the brain is "neuroplastic", i.e. changeable. We know that others have healed from this horrific symptom, so it DOES seem possible, but it can take an extraordinarily looooooong time. Those facts taken together provide some compelling evidence that things can be better. Please stay strong, Folks! I'm trying to do that, but we all know that it's really, really hard sometimes.

 

I'll keep putting up useful pieces of info, since I find that rational, logical thought can help to dispel myths and some of the anxiety. In the meantime, take care, Everyone, and thank you for your input. I hope others will join in too. Suffice to say, if you come across anything that you think might be helpful for the rest of us, please share it. Knowledge is power (the good kind of power!).

 

 

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I just thought of another thing: I recently came across some information about other things that can affect the GABA receptors, i.e. the GABA A Positive Allosteric Modulators. They include some sedative herbs -- like valerian, kava kava and chamomile -- plus alcohol and many other medications. Niacin/niacinamide (vitamin B3) is also on that list. It makes sense to me to avoid such things while I'm healing in case they're affecting the GABA A receptors that have been so affected by benzodiazepines.

 

If anyone is taking other medications, it makes sense to find out what the possible side effects are. It's hard to know what's "safe" these days!

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Lapsis, i take Previcid every day i can only imagine what that is doing and as for medicine i do not trust anything anymore !~CD
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Hi can do! I'm not at all familiar with that one, and of course, we all have to make our own decisions about what we take. If I look anything up these days, I see huge laundry lists of "possible side effects", and SO many of them include dizziness. It's always a gamble when we take medications, since our genetics determine so much. In any case, can do, I hope that whatever you're taking, you're aware of the possible side effects and you're comfortable taking it.

 

 

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