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Dizziness, vertigo, light-headedness, rocking or swaying sensations

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Miko789

I've been having dizziness  and lighthedeness, for the past 6 months, When I lay down I don't feel it, but when I sit  I feel it,

 

Also when I'm in the car I don't feel it so much.

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Miko789

Sometimes I feel off balance, anyone else has  it? what  did he /she do about it?

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SupahSet

I'm on vacation and I've been doing some fishing off shore, and some on a boat. I went on the boat a few times this week, with the last time being last night. Usually the boat dizziness wears off after a few hours (feeling like your body is adjusting to the wavy water). However it's been 12 hours and I still feel like I'm on a boat on water.

 

Has anyone else in WD that went on a boat and felt prolonged dizziness / feeling like you're still on the boat? How long did it last? Anything I can do to help?

 

Adding this on top of other dizziness, fatigue, and everything else sucks. 

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Junglechicken

I've experienced swaying the last few days.

 

Also fatigue.

 

I'm into the 4th month since my last dose on 16th April.

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TortugaHealing

Hello Everyone,

 

I was just wondering if anyone is having the rocking/swaying feeling (like being in a boat), and also light sensitivity, balance issues (worst in the shower), and horizontal eye movements back and forth?  Going to see an opthamologist as soon as I can make an appointment.  Thanks!  Eye movements are creeping me out!

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IrishMonkey92
7 hours ago, TortugaHealing said:

Hello Everyone,

 

I was just wondering if anyone is having the rocking/swaying feeling (like being in a boat), and also light sensitivity, balance issues (worst in the shower), and horizontal eye movements back and forth?  Going to see an opthamologist as soon as I can make an appointment.  Thanks!  Eye movements are creeping me out!

Hi TortugalHealing,

 

i have every single symptom you list here. I would recommend you cancel the opthamologost, they will only look at your eyes. You need to see a ENT doctor who will do Vestibular testing (not just look into your ears). 

 

May I ask what brought on these symptoms? Did you have a panic attack or stressor? Or did it start when you stopped medication? 

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IrishMonkey92
On 6/29/2018 at 3:32 AM, Miko789 said:

I've been having dizziness  and lighthedeness, for the past 6 months, When I lay down I don't feel it, but when I sit  I feel it,

 

Also when I'm in the car I don't feel it so much.

Hi Miko,

 

yeah I have all that. I don’t feel it in the car either, but when I get out of the car, it’s worse. Do you experience that? 

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IrishMonkey92
On 7/20/2018 at 3:10 PM, SupahSet said:

I'm on vacation and I've been doing some fishing off shore, and some on a boat. I went on the boat a few times this week, with the last time being last night. Usually the boat dizziness wears off after a few hours (feeling like your body is adjusting to the wavy water). However it's been 12 hours and I still feel like I'm on a boat on water.

 

Has anyone else in WD that went on a boat and felt prolonged dizziness / feeling like you're still on the boat? How long did it last? Anything I can do to help?

 

Adding this on top of other dizziness, fatigue, and everything else sucks. 

If you didn’t have this prior to being on the boat, then that sounds like MdDS (Mal De Debarquement Syndrome). Google it

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TortugaHealing

Hi IrishMonkey,

 

Thanks for your response.  It's comforting to know you v e got the same symptoms.  (Although of course it would be better if we had something else in common!). I was thinking too that maybe an inner ear problem would explain the symptoms.  Going to an ENT doc sounds like a very good idea--thanks for The input.  The ophthalmologist I saw recommended  I go back to the neurologist.  Can a neurologist also do vestibular testing?

 

I'm trying to figure out what brought on this cluster of symptoms.  I've been quite stressed in my personal life, giving up my apartment and moving back with family.  Also, my allergies may have been triggered by packing up and A lot of dust.  Fatigued due to insomnia.  

 

Do you know what triggered your symptoms?   Be well, Tortuga

 

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IrishMonkey92
2 hours ago, TortugaHealing said:

Hi IrishMonkey,

 

Thanks for your response.  It's comforting to know you v e got the same symptoms.  (Although of course it would be better if we had something else in common!). I was thinking too that maybe an inner ear problem would explain the symptoms.  Going to an ENT doc sounds like a very good idea--thanks for The input.  The ophthalmologist I saw recommended  I go back to the neurologist.  Can a neurologist also do vestibular testing?

 

I'm trying to figure out what brought on this cluster of symptoms.  I've been quite stressed in my personal life, giving up my apartment and moving back with family.  Also, my allergies may have been triggered by packing up and A lot of dust.  Fatigued due to insomnia.  

 

Do you know what triggered your symptoms?   Be well, Tortuga

 

It depends if the neurologist is a neurotologist. You’d ideally what one of those. Next best thing is an ENT or Neurologist. You’re just looking comprehensive Vestibular testing so I’d enquire do they offer that prior to paying for a consultation.

 

How soon after your stressful events (giving up your apartment and moving) did these symptoms begin? Did you have a panic attack at all? 

 

I believe my trigger was a massive panic attack after a health scare. So it was an extremely anxious/stressful time for me

 

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apace41

IM,

 

Thanks again for all your wisdom on this subject.

 

Are you familiar with this site:

 

https://www.seekingbalance.com.au/

 

Worth a look and the associated podcast is of interest. 

 

Best,

 

Andy

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IrishMonkey92
1 hour ago, apace41 said:

IM,

 

Thanks again for all your wisdom on this subject.

 

Are you familiar with this site:

 

https://www.seekingbalance.com.au/

 

Worth a look and the associated podcast is of interest. 

 

Best,

 

Andy

Yes I’m familiar with her. 

 

Fortunately I’ve just been granted treatment by my companies health insurance. So I got a diagnosis and treatment plan which will commence this week coming. 

 

Im getting EMDR and CBT therapy from a psychologist and Vestibular rehabilitation from a brain injury specialist. 

 

Hopefully it will work. I’ve had a few days symptom free last week and yesterday so my meditation and exercise seems to be helping 

 

 

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apace41
5 minutes ago, IrishMonkey92 said:

Hopefully it will work. I’ve had a few days symptom free last week and yesterday so my meditation and exercise seems to be helping 

 

That’s great to hear!  Do you have any other withdrawal symptoms or do you think the dizziness is on a separate track, i.e., not related to withdrawal.  I know that’s a tough question to answer but I’m curious as to your take on it.

 

Best,

 

Andy

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IrishMonkey92
11 minutes ago, apace41 said:

 

That’s great to hear!  Do you have any other withdrawal symptoms or do you think the dizziness is on a separate track, i.e., not related to withdrawal.  I know that’s a tough question to answer but I’m curious as to your take on it.

 

Best,

 

Andy

 

I believe its largely psychological as I’ve been given a ‘functional disorder’ diagnosis and it fits absolutely perfectly. Function disorders are often triggered by stressful or traumatic experiences. My panic attack was pretty traumatic.

 

 I’m in contact with several anxiety sufferers who got this after a panic attack/stressful situation in their life - they’ve never been on medications. I’ve also seen it a lot on the nomorepanic.co.uk forum. So, I believe coming off the medications spiked my anxiety quite high without me noticing. Then bam this happened. 

 

This is pretty much what I have:

https://lookaside.fbsbx.com/file/Psycho-Physiological Dizziness Sarah Edelman.pdf?token=AWwIbLe-N9ettBjBbzvdm6vOoUir-bARsg0od8ZLE5L3qhKMZUMwl0Fz2kb2YBDzIxrUCf4H27goC4T4ABLBAx-4gKjCKdbIB3MC6dY3ygLWZBSq3VnSj0iS3ykFqnow6ze-SzQhhZnwa_yn5VaUYuZVYDzIOTjH8JzBljPu_hRvjemeCThrbAZ-YqmKzAgbVzwnDZFmjF-pRnLj5vuNUrWf

 

Also:

Persistent postural-perceptual dizziness (PPPD): a common, characteristic and treatable cause of chronic dizziness

https://pn.bmj.com/content/18/1/5

 

its fascinating to read 

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TortugaHealing

Hi IrishMonkey,

 

I'm sorry it has taken me so long to respond to your last post!  (I'm not exceedingly computer literate, and have trouble finding posts sometimes.)  Anyways, I hope your health is getting better.  You mentioned a massive panic attack maybe triggering your symptoms.  I had bad chest pain and anxiety repeatedly after I had to stop Celexa cold turkey.  I guess I must have been having panic attacks (which I did not have previous to stopping Celexa abruptly).  Panic attacks really suck--I'm sorry you had to go through that.  Anyways, take good care of yourself.  Are your symptoms (swaying, eye movements, etc.) any better?  I did go to the neurologist after all.  He didn't see any of the eye movements when I went in.  He recommended I exercise an hour daily.  I don't always get a chance to exercise for the full hour daily, but my balance and swaying is improved when I exercise more.

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IrishMonkey92
3 hours ago, TortugaHealing said:

Hi IrishMonkey,

 

I'm sorry it has taken me so long to respond to your last post!  (I'm not exceedingly computer literate, and have trouble finding posts sometimes.)  Anyways, I hope your health is getting better.  You mentioned a massive panic attack maybe triggering your symptoms.  I had bad chest pain and anxiety repeatedly after I had to stop Celexa cold turkey.  I guess I must have been having panic attacks (which I did not have previous to stopping Celexa abruptly).  Panic attacks really suck--I'm sorry you had to go through that.  Anyways, take good care of yourself.  Are your symptoms (swaying, eye movements, etc.) any better?  I did go to the neurologist after all.  He didn't see any of the eye movements when I went in.  He recommended I exercise an hour daily.  I don't always get a chance to exercise for the full hour daily, but my balance and swaying is improved when I exercise more.

Hi, 

 

the symptoms come and go and wax and wane in severity - some days I’ve no swaying others I have it bad. I had nearly a week of nothing. Then I had a week of it being pretty bad. 

 

What tests did the neurologist do? 

 

What exercise do you do? How often do you do it? 

 

What other symptoms do you have or did have? You said you’ve horizontal eye movements, how often do you get them? Can you describe exactly what happens? 

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Cari

I have been dizzy and off balance for over 5 months since I went cold turkey off an AD. It is debilitating and has caused me to stop driving and not want to go out. I have it all the time, all day and night in different degrees, it doesn't matter if I am relaxed or stressed. I can get up in the middle of the night and I am still dizzy. It is my hardest w/d symptom and brought my life to a hault. I'm seriously thinking this is not fully w/d symptoms but another problem, that maybe the AD were masking and helping with or that going cold turkey caused. 

 

I do have fullness in crackling in my left ear. Could be an issue?? Or I have read a few posts about Vestibular problems. 

 

What kind of Doctor should I see?? 5 months is a long time and it has gotten worse not better. Im tired.

 

1 Dr told me it is psychological... but I refuse to believe I am THIS dizzy ALL the time for over 5 months because it is psychological. I wake up dizzy and go to bed dizzy. It just changes in degrees. 

 

There is definitely something wrong. I don't see many posting that they are dizzy and off balance all the time for months. 

 

Just an added note. The only med I am on now is Lorazepam, it was given to me 1 month ago to help with sleep. And Ive been tapering from it fir a few weeks.... I was always taking a small amount like 1/6 of a 1 mg pill but I am down to like a tiny piece maybe 1/20 but the more I go off the dizzier I get. Dramatically. I have read one solution to vestibular is taking a benzo.... it never stopped me from being dizzy taking the small amount I was... but I am definitely getting dramatically dizzier as I go smaller. Problems standing even.

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divalee
24 minutes ago, Cari said:

I have been dizzy and off balance for over 5 months since I went cold turkey off an AD. It is debilitating and has caused me to stop driving and not want to go out. I have it all the time, all day and night in different degrees, it doesn't matter if I am relaxed or stressed. I can get up in the middle of the night and I am still dizzy. It is my hardest w/d symptom and brought my life to a hault. I'm seriously thinking this is not fully w/d symptoms but another problem, that maybe the AD were masking and helping with or that going cold turkey caused. 

 

I do have fullness in crackling in my left ear. Could be an issue?? Or I have read a few posts about Vestibular problems. 

 

What kind of Doctor should I see?? 5 months is a long time and it has gotten worse not better. Im tired.

 

1 Dr told me it is psychological... but I refuse to believe I am THIS dizzy ALL the time for over 5 months because it is psychological. I wake up dizzy and go to bed dizzy. It just changes in degrees. 

 

There is definitely something wrong. I don't see many posting that they are dizzy and off balance all the time for months. 

Dear Cari

I am so sorry you are suffering so much -  Please go to an Ear Nose & Throat specialist.  You might have BPPV - iif that is what it is in can be fix with certain manuvers that the doctor can do and then you can do it at home.   Most important please see an ENT as soon as possible.

Good Luck

Lee

 

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Cari
44 minutes ago, divalee said:

Dear Cari

I am so sorry you are suffering so much -  Please go to an Ear Nose & Throat specialist.  You might have BPPV - iif that is what it is in can be fix with certain manuvers that the doctor can do and then you can do it at home.   Most important please see an ENT as soon as possible.

Good Luck

Lee

 

Thank you Lee. My left ear is worse than normal and it has felt like I was getting a sinus infection lately. I need to push a Dr to get to the bottom of this dizziness. 

 

Thx for responding!

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apace41
5 hours ago, Cari said:

I have been dizzy and off balance for over 5 months since I went cold turkey off an AD. It is debilitating and has caused me to stop driving and not want to go out. I have it all the time, all day and night in different degrees, it doesn't matter if I am relaxed or stressed. I can get up in the middle of the night and I am still dizzy. It is my hardest w/d symptom and brought my life to a hault. I'm seriously thinking this is not fully w/d symptoms but another problem, that maybe the AD were masking and helping with or that going cold turkey caused. 

 

Hi, Cari.  I'm sorry you are struggling as well.  Dizziness is not a simple thing to answer because it is a symptom of so many different things and is quite subjective so that what you describe as dizziness I might describe as lightheadedness, etc.  There is a ton of information (good and bad) about this on the web.  I agree with Divalee that your first stop in getting "medical clearance" would be to go to an Ear Nose and Throat doctor.  In the case of dizziness, if you get lucky you have something like BPPV or labrynthitis that can be treated and cleared up.  Many do not fall into that category and then the journey begins.  From there, the next logical step would be to go to a neurotologist, i.e., someone who specializes in the intersection of the ear and the nervous system.  If that path leads you to either a "we don't see anything clearly wrong" or a general dizziness diagnosis like vestibular neuritis which doesn't respond to treatment then you find yourself in the "land of the dizzies" where some of us have resided for years.  One of the more common diagnoses is something called Persistent Postural Perceptual Dizziness or PPPD (formerly known as chronic subjective dizziness).  This condition is marked by a disconnect between the inputs being received from your senses and the processing taking place in the brain so that someone will "feel" dizzy but not be objectively dizzy when tested.  

 

The notion that one can be dizzy solely from anxiety and even when one doesn't FEEL anxious is quite well documented.  See www.anxietycentre.com. where this issue is discussed in depth.  From that website:

 

The sensation:
You feel (or suddenly feel) dizzy, lightheaded, faint, off balance, unsteady, that you might faint or pass out, or that you might fall over. It might also feel as though you are walking on a boat on water, that the floor beneath you feels like it is moving up and down or side to side, that you feel your legs may not support you, that you are unsteady, that it’s hard to keep your balance, or that your body is floating in the air.

You might also have difficulty placing your feet because your perception of the ground or floor may seem wrong or incorrect. In some cases, it may seem that even though you are standing on a firm floor, the floor may be vibrating or moving; the room may appear to be moving or rocking; the surroundings around you seem to be moving, shaking, rocking, or vibrating; and/or you might feel like your body is swaying from side to side and/or back and forth.

While you haven't passed out yet, you think you might. The prospect may frighten you. You may also think, "What if I pass out, what will everyone think of me?" The thought of passing out frightens you, which can cause more symptoms and fear.

This symptom can also be experienced as a dizzy/lightheaded ‘spell,’ that is like having a sudden feeling of being dizzy/lightheaded that then disappears.

This symptom and/or ‘spells’ can come and go suddenly, come and linger, or come and remain for some time. This symptom and/or ‘spells’ might occur rarely, frequently, or persistently.

This symptom can also be characterized as having ‘episodes’ of dizziness/lightheadedness/feeling like you are going to pass out that come and go, or come and eventually ease off, even if only slightly. Even people who experience persistent dizziness/lightheadedness/feeling like you are going to pass out notice that they experience waves (episodes) of increases and decreases of this symptom.

Those who experience this symptom persistently 24/7 can also notice increases and decreases in severity associated with ‘waves’ or ‘episodes’ of intensity. Sometimes the intensity can increase for an extended period of time, such as days before the intensity decreases again.

Some people experience episodes of this symptom in association with an increase and decrease in their anxiety and stress (this symptom’s intensity and severity increases and decreases with the intensity of their anxiety and stress), whereas others experience persistent dizziness regardless of an increase or decrease in anxiety and stress.

All variations and combinations of the above are common.

For some people, episodes of anxiety-caused dizziness and lightheadedness can trigger anxiety and therefore be accompanied by an immediate stress response (or panic attack) and its resulting sensations and symptoms, such as nausea, vomiting, sweating, feeling disoriented, rapid heart rate, heart palpitations, having a sudden urge to escape, and so on.

 

In essence, what happens is the body becomes hyperstimulated and the amygdala, the fear center of the brain, gets "locked" in the "on" position so that things that happen when anxious happen even without FEELING anxious.  The body is, simply put, always on high alert and that becomes your new norm. Thus, you can be symptomatic (of anxiety and stress) even when not feeling anxious or stressed.  My personal theory is that the act of withdrawing from the meds is sufficient for some of us to throw our bodies into this state and that triggers this response.  It may also be, as in my case, that you had a tendency toward anxiety and dizziness would have manifested as a symptom given enough time, but the meds intervened and stopped the dizziness from ever taking hold.

 

Long story short, it is a complicated issue and my suppositions may not apply to you. First things first -- get a check up to rule out any kind of organic cause for your dizziness.  If you don't get answers come back and we can talk more.

 

Best,

 

Andy

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Cari
18 hours ago, Altostrata said:

What time do the hypnic jerks occur? Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. Use a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right.

 

11 minutes ago, apace41 said:

 

Hi, Cari.  I'm sorry you are struggling as well.  Dizziness is not a simple thing to answer because it is a symptom of so many different things and is quite subjective so that what you describe as dizziness I might describe as lightheadedness, etc.  There is a ton of information (good and bad) about this on the web.  I agree with Divalee that your first stop in getting "medical clearance" would be to go to an Ear Nose and Throat doctor.  In the case of dizziness, if you get lucky you have something like BPPV or labrynthitis that can be treated and cleared up.  Many do not fall into that category and then the journey begins.  From there, the next logical step would be to go to a neurotologist, i.e., someone who specializes in the intersection of the ear and the nervous system.  If that path leads you to either a "we don't see anything clearly wrong" or a general dizziness diagnosis like vestibular neuritis which doesn't respond to treatment then you find yourself in the "land of the dizzies" where some of us have resided for years.  One of the more common diagnoses is something called Persistent Postural Perceptual Dizziness or PPPD (formerly known as chronic subjective dizziness).  This condition is marked by a disconnect between the inputs being received from your senses and the processing taking place in the brain so that someone will "feel" dizzy but not be objectively dizzy when tested.  

 

The notion that one can be dizzy solely from anxiety and even when one doesn't FEEL anxious is quite well documented.  See www.anxietycentre.com. where this issue is discussed in depth.  From that website:

 

The sensation:
You feel (or suddenly feel) dizzy, lightheaded, faint, off balance, unsteady, that you might faint or pass out, or that you might fall over. It might also feel as though you are walking on a boat on water, that the floor beneath you feels like it is moving up and down or side to side, that you feel your legs may not support you, that you are unsteady, that it’s hard to keep your balance, or that your body is floating in the air.

You might also have difficulty placing your feet because your perception of the ground or floor may seem wrong or incorrect. In some cases, it may seem that even though you are standing on a firm floor, the floor may be vibrating or moving; the room may appear to be moving or rocking; the surroundings around you seem to be moving, shaking, rocking, or vibrating; and/or you might feel like your body is swaying from side to side and/or back and forth.

While you haven't passed out yet, you think you might. The prospect may frighten you. You may also think, "What if I pass out, what will everyone think of me?" The thought of passing out frightens you, which can cause more symptoms and fear.

This symptom can also be experienced as a dizzy/lightheaded ‘spell,’ that is like having a sudden feeling of being dizzy/lightheaded that then disappears.

This symptom and/or ‘spells’ can come and go suddenly, come and linger, or come and remain for some time. This symptom and/or ‘spells’ might occur rarely, frequently, or persistently.

This symptom can also be characterized as having ‘episodes’ of dizziness/lightheadedness/feeling like you are going to pass out that come and go, or come and eventually ease off, even if only slightly. Even people who experience persistent dizziness/lightheadedness/feeling like you are going to pass out notice that they experience waves (episodes) of increases and decreases of this symptom.

Those who experience this symptom persistently 24/7 can also notice increases and decreases in severity associated with ‘waves’ or ‘episodes’ of intensity. Sometimes the intensity can increase for an extended period of time, such as days before the intensity decreases again.

Some people experience episodes of this symptom in association with an increase and decrease in their anxiety and stress (this symptom’s intensity and severity increases and decreases with the intensity of their anxiety and stress), whereas others experience persistent dizziness regardless of an increase or decrease in anxiety and stress.

All variations and combinations of the above are common.

For some people, episodes of anxiety-caused dizziness and lightheadedness can trigger anxiety and therefore be accompanied by an immediate stress response (or panic attack) and its resulting sensations and symptoms, such as nausea, vomiting, sweating, feeling disoriented, rapid heart rate, heart palpitations, having a sudden urge to escape, and so on.

 

In essence, what happens is the body becomes hyperstimulated and the amygdala, the fear center of the brain, gets "locked" in the "on" position so that things that happen when anxious happen even without FEELING anxious.  The body is, simply put, always on high alert and that becomes your new norm. Thus, you can be symptomatic (of anxiety and stress) even when not feeling anxious or stressed.  My personal theory is that the act of withdrawing from the meds is sufficient for some of us to throw our bodies into this state and that triggers this response.  It may also be, as in my case, that you had a tendency toward anxiety and dizziness would have manifested as a symptom given enough time, but the meds intervened and stopped the dizziness from ever taking hold.

 

Long story short, it is a complicated issue and my suppositions may not apply to you. First things first -- get a check up to rule out any kind of organic cause for your dizziness.  If you don't get answers come back and we can talk more.

 

Best,

 

Andy

Thank you Andy!

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