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I’ve seen other topics on this but does anyone know WHY we experience these symptoms?

 

Is it a brain dysfunction, an inner ear disturbance...what causes it?

 

I’m on less than 1mg of clonazepam (.84mg) a day.  I wasn’t this dizzy when I was taking 4mg of alprazolam.  Thank God I’m off that poison (21 days now!). Yeah!

 

I used to take walks every day.  I was dizzy but not like this.  Now I’m afraid I’ll fall on my face.  I feel like I’m walking sideways on a bouncing rubber floor. 

 

It seems the lower in dose I go, the more intense it gets.  Maybe this is what contributes to my daily nausea?

 

Does it get better?

 

Any ideas buddies?

 

 

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Hi there.  I am no expert and we are all different but I was put on Clonazepam for Vertigo.  It is supposed to suppress the vestibular (inner ear) system and in the beginning it did help. Before it, I was unable to walk without assistance.  Dizziness and Vertigo are still issues now, but not nearly as much.  After the Clonazepam stopped working, I was just staving off the worst of the withdrawal.  I cried a lot and considered suicide regularly.  I used to plan my days around my doses so I knew when my window of 'function' would be best.  Little did I know that I was provoking tolerance withdrawal dizziness and possible inner ear damage.  I was so nauseated most of the time.  Just out of my head with seasickness.

 

Its not a bowl of cherries or anything now,  (still tapering and healing), but I have to say my vertigo is less by half at least.  I still have extreme days but they are the exception now.  I walk just fine most days and fake it the rest.  Nausea is way down too.... Hope this helps.....

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Thanks @janiceh! I appreciate your response. I rarely get a window of “function”.  I’m dizzy/nauseated  all day from the minute I wake up until I fall into bed.  Once in bed, I “sleep” restlessly for about 4 hours then it begins all over again. Nausea hasn’t abated and the dizziness seems to be worsening.  I was hoping the lower in dose I go, the better I would feel.  Maybe I haven’t reached that “dose” yet.  Hopefully soon.

 

SG

💜

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Sg

 

Had the same issues. Stopped x now on k

 

When it was ridiculously bad I would take dramamine or meclazine for lunch. A lot of times it would put me to sleep for a couple hours. But made the day a bit more tolerable and provided a couple hours of decent sleep.

 

Good luck and best wishes.

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Thanks for the tips @mymissingmoon.  I’ve taken Dramamine and it went paradoxical on me...revved up anxiety and diminished my sleep.  I do take meclizine during the day.  Sometimes it helps.  The doc just prescribed Vistaril.  Maybe I’ll have a better outcome with that.

 

I really need a break!  The nausea and dizziness are really weighing me down.

 

Thanks again!

 

SG

 

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Hi septgirl- I suffered from dizziness during my taper also. The reason that we are dizzy is because the portion of the brain called the cerebellum is rich in GABA receptors , and is therefore very effected when we decrease or stop benzos. The good news is that the cerebellum and all portions of the brain are hard wired to heal itself. There are exercises specifically to aide in this called VOR ( vestibular ocular reflex) exercises if you want to google them and research the topic. They helped me tremendously with my dizziness- it took about a week for me to start seeing results. It is not instant results unfortunately, but our brains do want to heal. Of course what works for one person may not work for another, but I wanted to pass it along as it is a non med treatment. Hope it can help you and others who read the post in some way - best wishes through your recovery. Missy
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Buddy not sure if you mean me?  Yes after a head injury I ended up with neuro Lyme which was profound vertigo.  I found my way to a really great Lyme specialist and treated both holistic and pharma antibiotics.  I am in remission for now.  It was a long long grind.
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Oh how I can relate. All the way down from 40 mg V to my current 4 mg I have experienced  dizziness, a general off balance feeling. Used to come and go but the last 10 days, no reprieve. I try very hard not to stress about it as panic itself can increase dizziness. I have used a rolling walker the past 14 months due to feeling unsteady. There is a dizziness support group. I think we just have to hang in there. And trust in the slow healing process. I keep looking for that magic exercise or magic supplement,  but to no avail. It's like you never know when it will be a good day, or a good hour. I see people my age nonchalantly walking in my neighborhood, and I almost tear up. I want to take walks too! Someday, post jump, this will be behind us.
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Sept.Girl... I have to say - I was driving into town today and thinking about my 8 yr Clonazepam run. 

 

I had to have support to walk without looking drunk and if I walked and watched the ground, it would telescope and wave all about. 

I had many weird vertigo events,  I was never sure when they would happen and yes to the nausea too.  Meclazine didn't touch it. 

 

Since I did the switch over to Valium (which is a less complicated form of benzo), my horrible dizziness has decreased and decreased.  In my case I think my head injury (what benzos do too) and lyme had something to do with how bad it was.  But I was on that crap for 8 years and the last 4 years were worse and worse for dizziness. 

 

So it seems strange that I would switch to Valium now and be so much better.  In spite of the taper.  I still get that floaty boaty feeling and I have some terrible waves of nausea starting too.  But nothing like Clonazepam.  It might be an option for you to switch over....  The Valium has a longer half life as well, so the whiplash effect of tolerance withdrawal is kinder for me anyways.....  Much Love. 

 

Stay strong  :smitten:

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I am getting worse. I am holding at 4 mg. To everyone out there off balance and not sure footed, my psychiatrist reassures me that if the symptom came with the benzo,  it will eventually leave as we heal. Once you are checked out for stroke, ear disorder, tumor, then let it go. My doctor told me that elevated anxiety just feeds this. I think it helps for us to talk about it. We can reassure each other because continual morning to night imbalance just grinds you down. You lose interest in physical activity, and that's so wrong because exercise is healing. You lose interest in reading because for me at least, momentary almost fainting feeling occurs when I am looking at either my phone or my tablet.  My daily battle now, at just 10% of where I started (40 mg down to 4) is to over and over again  remind myself that this, too, shall pass. To do seated exercises if I think I am swaying. But the mental battle is tougher. We have to support each other because to the outside world and to many primary care physicians, they think 25% cuts and voila!!!! We should be totally off in 4 weeks. Yikes. We know better. It is months, years. But we are warriors and we will heal. I am going to look for those VOR exercises today.
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Joyatlast,  I have exactly the same when I see others walking by without a care in the world and as easy as can be. Used to love walks, now it's a torture every step I take. Dizzy,  jelly legs,  tired to the bone.

My dizziness started after 4 months of tapering. It got less for a few months, but is now back with a vengeance. Nausea ditto. Terrible.

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Joyatlast,  I have exactly the same when I see others walking by without a care in the world and as easy as can be. Used to love walks, now it's a torture every step I take. Dizzy,  jelly legs,  tired to the bone.

My dizziness started after 4 months of tapering. It got less for a few months, but is now back with a vengeance. Nausea ditto. Terrible.

 

Ditto on the nausea!  I wonder if balance issues are feeding the part of the brain that controls nausea? That has been my one constant before I even began my taper.

Balance/dizzy was always there but got really bad toward the end of summer. I used to take a decent walk every morning despite dizziness.  Now I’m afraid I’ll fall on the street.  I “walk” in my house with my phone in hand.

 

I’m off alprazolam (Xanax) 40 days now (10/10).  I don’t miss it.  I’ve tapered 1mg clonazepam (Klonopin) by more than 1/4 tablet in less than 6 weeks.  Holding doesn’t help me. 

 

I’m hoping to get to a dose that will finally relieve these symptoms.

 

I may take a big cut next week to 0.5mg/day divided into three equal doses. Slow tapering is stressing me out.  Maybe I’ll get relief. 

 

SG

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Septgirl,  that's really crazy, I do the exact same thing: walk through the house for a couple of minutes every hour, with my phone in my jeans back pocket!  So I "exercise" for about 30 minutes a day. Should a dizzy spell occur, I can sit down right away.
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Septgirl,  that's really crazy, I do the exact same thing: walk through the house for a couple of minutes every hour, with my phone in my jeans back pocket!  So I "exercise" for about 30 minutes a day. Should a dizzy spell occur, I can sit down right away.

 

@Trochsetter

 

The psychologist doesn’t agree with my method.  I’m supposed to be outside facing agoraphobia.  No one really understands how intimidating and scary it is to feel like this unless you’re going through it. 

 

I go out when I can but not nearly as much as I should.  Going into a store with fluorescent lights?  That gives a whole new meaning to dizzy and balance issues.

 

Sitting in the psychologist’s office is killer because of the lights and dizziness.  There has to be a correlation between the balance/dizzy issues and constant nausea.

 

I haven’t read anything to explain it otherwise...well, other than there are GABA receptors in our gut. 

 

Hoping healing!

 

SG

💜

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Thank you all ladies.... it is sooo good to know I am not alone.  It has been a long lonely road.  Friends can simply not relate to the nausea, the seasickness, especially when it can be light triggered.  I gave up trying to describe my world to those around me.  It's like being an alien and faking being human so you can be not alone.  I don't know what's ahead, but I am so glad to have company on my journey.  I salute your courage.  Our courage.  And I am grateful to the ones that made it and come back here to hold out their hand...
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