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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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anona

I haven't read all of the posts in this thread but most of these symptoms, ruling out inner ear and brain issues, could be related to vestibular migraines!

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apace41
On 9/16/2018 at 7:09 AM, IrishMonkey92 said:

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 

 

 

Hope you are doing well, IM.  Wondering how you were getting on with your diagnosis and treatment plan?

I've had an uptick in the sensations this week and that sent me to this thread so thought I'd check in.

 

Best,

 

Andy

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IrishMonkey92
On 11/29/2018 at 5:16 PM, apace41 said:

 

Hope you are doing well, IM.  Wondering how you were getting on with your diagnosis and treatment plan?

I've had an uptick in the sensations this week and that sent me to this thread so thought I'd check in.

 

Best,

 

Andy

Still no improvement. I’ve compensated perfectly well, my balance is scored as above 90% of the population. I’ve never had those issues really. Just a phantom sensation of bouncing, swaying... and feeling generally off. 

 

I’ve 3 more months of treatment. After that I’m giving up. They’re thinking because of a unique characteristic of my symptoms (i get worse after travel) that I may be MdDS and not PPPD. They’re extremely close in symptoms but that trait tends to be seen in MdDS patients. They’re trying their best to get me on SSRI/SNRI’s but I refuse. 

 

After these 3 months. I’m done. I’ve literally no where to go. I’m weak and I know I can’t survive this excuse for a life feeling like this. Christmas is coming up and I use to love it, it was my favourite time of year but I can’t bare it the past 3 years since I’ve gotten sick. I’ve absolutely no interest, no love, no spirit to enjoy it. How can you when you feel miserable?

 

I’m only 26 - had this since I was 23. I’ve compensated fine, balance has always been perfect from day one, never had spinning, no nystagmus. Yet I can’t cope with life feeling off, rocking, swaying, bouncing after every bit of car travel or restaurant, supermarket or petrol station. I just cant take it anymore. 3 years of this and 3 months of Vestibular therapy that’s had no affect on me. I’ve ran out of options. This won’t end well for me sorry for the pity party. I wish I could be more optimistic for you. 

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apace41
3 hours ago, IrishMonkey92 said:

They’re trying their best to get me on SSRI/SNRI’s but I refuse. 

 

After these 3 months. I’m done. I’ve literally no where to go. I’m weak and I know I can’t survive this excuse for a life feeling like this.

 

IM, 

 

Sorry you are struggling.  I am in the same (rocky) boat so I feel your pain.

 

I see these two statements as somewhat contradictory.  You won't try meds for this syndrome yet you "can't survive this excuse for a life"? 

 

SA is not a site for advocating meds and I am a moderator; HOWEVER, if you have a medical condition that is not a psychological condition (and PPPD, MdDS are NOT psychological), why would you be so opposed to a med shown to have benefit for the condition?  

 

If you tell me that you remain optimistic because (i) these conditions known to come and go in many cases, (ii) there are new things being developed all the time (on that front please see https://otolithlabs.com/ (I was just introduced to it today and it may be beneficial -- anticipated FDA approval next summer) and http://www.frontiersin.org/Journal/10.3389/fneur.2014.00124/abstract (using optokinetics in MdDs to readapt the vestibulo-ocular reflex), and (iii) much of this may well be "mind/body" as Joey Remenyi of seekingbalance.com.au preaches) then I would certainly say, no need to try meds.  BUT, if you are at the end of your rope as you purport to be then trying low dose meds seems to be a logical step.

 

Not sure I understand the thinking.

 

Best,

 

Andy

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IrishMonkey92
On 12/1/2018 at 9:26 PM, apace41 said:

 

IM, 

 

Sorry you are struggling.  I am in the same (rocky) boat so I feel your pain.

 

I see these two statements as somewhat contradictory.  You won't try meds for this syndrome yet you "can't survive this excuse for a life"? 

 

SA is not a site for advocating meds and I am a moderator; HOWEVER, if you have a medical condition that is not a psychological condition (and PPPD, MdDS are NOT psychological), why would you be so opposed to a med shown to have benefit for the condition?  

 

If you tell me that you remain optimistic because (i) these conditions known to come and go in many cases, (ii) there are new things being developed all the time (on that front please see https://otolithlabs.com/ (I was just introduced to it today and it may be beneficial -- anticipated FDA approval next summer) and http://www.frontiersin.org/Journal/10.3389/fneur.2014.00124/abstract (using optokinetics in MdDs to readapt the vestibulo-ocular reflex), and (iii) much of this may well be "mind/body" as Joey Remenyi of seekingbalance.com.au preaches) then I would certainly say, no need to try meds.  BUT, if you are at the end of your rope as you purport to be then trying low dose meds seems to be a logical step.

 

Not sure I understand the thinking.

 

Best,

 

Andy

Hi Andy,

 

You have a great grasp of the knowledge around this. My issue is... they’re wanting to put me on a med, a med that I conveniently just came off prior to the onset of this syndrome. I just can’t comprehend how everything is just a ‘coincidence’ and I’ve developed this syndrome in such a short period of time. Notably others have a similar experience of symptoms after coming off Benzos and antidepressants. Although some seem to have improved or cured. 

 

They tell me the SSRI/SNRI’s aren’t treating the anxiety - they’re ‘dumbing down the senses’. Wouldn’t it make sense that my rapid withdrawal caused a reverse? Sent my senses into overdrive. 

 

I just don’t know what to think. Many on here state if you came off the drug and you’ve this syndrome then stay off it and it’ll slowly reverse itself. Something down in my gut tells me not to touch antidepressants again - besides, they tried to get my on it again after they clearly seen I was distressed with these scary symptoms back when they first onset, and I took awful adverse reactions from them, from even the same drug I once was on (I had absolutely no issue going on it the first time). I can’t help but think.... but what’s changed this time? I tolerated it very well. Except I felt stupid and gained 3 stone.

 

There just something isn’t right here. But my gut is telling me not to go back on a drug that may have actually caused this in the first place - what further damage could it do? 

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apace41

IM,

 

I understand that you are unsure -- there is no way to have certainty around any of this and, given the power of the placebo effect in all of this, if you think going back on Citalopram would create more problems for you it most likely will.

 

If you believe you have PPPD then it was likely triggered by the panic attack you had and describe in your intro.  While the panic attack was caused by the withdrawal in my mind it probably stands alone as a cause of the PPPD (as opposed to the PPPD being a withdrawal symptom).  It is, of course, very hard to parse out and I could be wrong.  Assuming that you have PPPD that was triggered by the panic attack and being exacerbated by the withdrawal you can certainly try to "wait it out" and see if it improves.  If you can do that I would certainly be an advocate.  My response was to the sense that you don't think you do that and need to "do something."  If you are in that category then, other than the protocols I referenced above, trying a small amount of a med is the only course I see.  If the Citalopram is the one that concerns you most, perhaps a small dose of SNRI might be an approach that would address the PPPD.  Timothy Hain at Chicago dizzy seems to favor Effexor for vestibular stuff.  

 

AGAIN, I AM NOT ADVOCATING MEDS -- unless you are at the point of losing hope.  I prefer all the other approaches.  And, if you did go that route, I would go VERY LOW to start.

 

Best,

 

Andy

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IrishMonkey92
39 minutes ago, apace41 said:

IM,

 

I understand that you are unsure -- there is no way to have certainty around any of this and, given the power of the placebo effect in all of this, if you think going back on Citalopram would create more problems for you it most likely will.

 

If you believe you have PPPD then it was likely triggered by the panic attack you had and describe in your intro.  While the panic attack was caused by the withdrawal in my mind it probably stands alone as a cause of the PPPD (as opposed to the PPPD being a withdrawal symptom).  It is, of course, very hard to parse out and I could be wrong.  Assuming that you have PPPD that was triggered by the panic attack and being exacerbated by the withdrawal you can certainly try to "wait it out" and see if it improves.  If you can do that I would certainly be an advocate.  My response was to the sense that you don't think you do that and need to "do something."  If you are in that category then, other than the protocols I referenced above, trying a small amount of a med is the only course I see.  If the Citalopram is the one that concerns you most, perhaps a small dose of SNRI might be an approach that would address the PPPD.  Timothy Hain at Chicago dizzy seems to favor Effexor for vestibular stuff.  

 

AGAIN, I AM NOT ADVOCATING MEDS -- unless you are at the point of losing hope.  I prefer all the other approaches.  And, if you did go that route, I would go VERY LOW to start.

 

Best,

 

Andy

 

You make so much sense Andy. All you say about the PPPD could indeed be correct. Can you remind me what caused your dizziness? Can you not go back on an SSRI or Benzo to make it go away for you? 

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apace41
4 hours ago, IrishMonkey92 said:

You make so much sense Andy. All you say about the PPPD could indeed be correct. Can you remind me what caused your dizziness? Can you not go back on an SSRI or Benzo to make it go away for you? 

 

Thanks for the affirmation, IM.  It's the product of (like you) doing WAY too much research trying to figure out how to feel better.

 

My story started in 1986 before any meds when I was on vacation and spent several days sunning on a floating dock.  One day, as I was also developing an inner ear pain, I didn't stop "floating" after I got off the dock.  After returning home I did the usual circuit of ENT, Otoneurologist, brain scans, etc.  Nobody found anything and courses of antibiotics for the inner ear infection that was assumed did nothing.  After several weeks, I saw the family doctor and he gave me a mild benzo (I was 24 and had no idea what it was) and I felt better.  Whether it calmed the anxiety that triggered the dizziness, dampened the vestibular function or otherwise, I felt better and at 24 with no internet to do any research (not that I would have at that age), I said, "good to go."  I had some relapses that were minor over the years and at one point an SSRI was added but I rolled happily forward for 20+ years with no doctor EVER suggesting I consider coming off these "short-term" medications.  In 2012 I had breakthrough dizziness and we tried upping the meds to no avail.  At that point there WAS an internet and I did my research and was horrified at what I found primarily in the benzo world.  I began my taper of the benzo still believing that A/Ds were "no big deal" since that was what benzo sites said (and still say for the most part).  Then I found SA and I've been engaged in a 6 year struggle to get off of both meds. 

 

So,what do I have?  Is it PPPD?  Is it MdDb?  It it vestibular migraine?  Is it simply anxiety?  Is it withdrawal from the drug?  Your guess is as good as mine.  Like you, my preference is to not be on any drugs and simply heal myself in a holistic fashion.  Among other things, we don't know the long term effect of the ADs and we know that long term use of benzos increases the risk of things like Alzheimer's.  Do I think about going back on them?  I think about it all the time but I'm not confident it would take care of the problem since I updosed the A/D and the benzo back in 2012 and it didn't help.  I've considered trying a small dose of an SNRI (Effexor or Cymbalta) but, among other things, I'm scared that my CNS is so fragile right now that adding any new drug could trigger a worse reaction rather than improvement.

 

And so I've gathered an war room of information on dizziness and what might cause it, how one might help it, etc. I have professionals I can reach out to for reassurance and testing and additional ideas.  I bought the Wii Balance unit since there is data on vestibular rehab using it. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3922272/

 

But, and this is a big but... I suck at follow through because I feel crappy so often.  Getting on the Wii Balance machine requires effort and when I'm exhausted from a day of work and feeling dizzy I'd rather crash in front of a game or a show than do something that requires effort.  I did it all for a long time and didn't see much result and I got tired of working so hard.  Withdrawal may or may not have caused (or exacerbated) the dizziness but it definitely has taken away a lot of my motivation and drive.  The day after day of feeling this along with depersonalization, anxiety, body pain, etc. has caused significant battle fatigue.  So, while I don't want to try meds for the same reasons you don't, I find myself inching closer and closer on a daily basis because the fight is literally being sucked out of me.

 

I know this is not the most positive post in my history but it is what it is.   

 

I could go on but I'll stop for now.

 

Thanks for asking.

 

Best,

 

Andy

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IrishMonkey92
1 hour ago, apace41 said:

 

Thanks for the affirmation, IM.  It's the product of (like you) doing WAY too much research trying to figure out how to feel better.

 

My story started in 1986 before any meds when I was on vacation and spent several days sunning on a floating dock.  One day, as I was also developing an inner ear pain, I didn't stop "floating" after I got off the dock.  After returning home I did the usual circuit of ENT, Otoneurologist, brain scans, etc.  Nobody found anything and courses of antibiotics for the inner ear infection that was assumed did nothing.  After several weeks, I saw the family doctor and he gave me a mild benzo (I was 24 and had no idea what it was) and I felt better.  Whether it calmed the anxiety that triggered the dizziness, dampened the vestibular function or otherwise, I felt better and at 24 with no internet to do any research (not that I would have at that age), I said, "good to go."  I had some relapses that were minor over the years and at one point an SSRI was added but I rolled happily forward for 20+ years with no doctor EVER suggesting I consider coming off these "short-term" medications.  In 2012 I had breakthrough dizziness and we tried upping the meds to no avail.  At that point there WAS an internet and I did my research and was horrified at what I found primarily in the benzo world.  I began my taper of the benzo still believing that A/Ds were "no big deal" since that was what benzo sites said (and still say for the most part).  Then I found SA and I've been engaged in a 6 year struggle to get off of both meds. 

 

So,what do I have?  Is it PPPD?  Is it MdDb?  It it vestibular migraine?  Is it simply anxiety?  Is it withdrawal from the drug?  Your guess is as good as mine.  Like you, my preference is to not be on any drugs and simply heal myself in a holistic fashion.  Among other things, we don't know the long term effect of the ADs and we know that long term use of benzos increases the risk of things like Alzheimer's.  Do I think about going back on them?  I think about it all the time but I'm not confident it would take care of the problem since I updosed the A/D and the benzo back in 2012 and it didn't help.  I've considered trying a small dose of an SNRI (Effexor or Cymbalta) but, among other things, I'm scared that my CNS is so fragile right now that adding any new drug could trigger a worse reaction rather than improvement.

 

And so I've gathered an war room of information on dizziness and what might cause it, how one might help it, etc. I have professionals I can reach out to for reassurance and testing and additional ideas.  I bought the Wii Balance unit since there is data on vestibular rehab using it. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3922272/

 

But, and this is a big but... I suck at follow through because I feel crappy so often.  Getting on the Wii Balance machine requires effort and when I'm exhausted from a day of work and feeling dizzy I'd rather crash in front of a game or a show than do something that requires effort.  I did it all for a long time and didn't see much result and I got tired of working so hard.  Withdrawal may or may not have caused (or exacerbated) the dizziness but it definitely has taken away a lot of my motivation and drive.  The day after day of feeling this along with depersonalization, anxiety, body pain, etc. has caused significant battle fatigue.  So, while I don't want to try meds for the same reasons you don't, I find myself inching closer and closer on a daily basis because the fight is literally being sucked out of me.

 

I know this is not the most positive post in my history but it is what it is.   

 

I could go on but I'll stop for now.

 

Thanks for asking.

 

Best,

 

Andy

 

Interesting that you had no prior medication history when this terrible syndrome latched itself on you. My opinion would suggest MdDS. Have you explored that? Do you feel worse when being still and laying down or worse when walking? Do you get worse after travel? 

 

 

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apace41
8 minutes ago, IrishMonkey92 said:

 

Interesting that you had no prior medication history when this terrible syndrome latched itself on you. My opinion would suggest MdDS. Have you explored that? Do you feel worse when being still and laying down or worse when walking? Do you get worse after travel? 

 

Not usually a problem when I'm laying down or still.  More annoying when walking.  Never really noticed much of a difference after travel to be honest.  Typically, MdDb would be characterized by someone feeling fine while driving but having a return of symptoms when the car stopped.  In my case, I'm usually okay driving and when stopped but feel it again when I get out of the car to walk to my destination.  Of course, as we know, it's really hard to distinguish all of these syndromes based on the fine details.  I'm not sure that distinguishing between MdDb, Vestibular Migraine, PPPD, etc. really matters all that much because there are no specific treatments based on "what it is" other than things like Topiramate for vestibular migraine.  In essence, I'm not sure there is a meaningful distinction between PPPD and MdDb in terms of symptoms and treatment.

 

I've looked at it from all angles.  Thought about MdDb and had one doctor go that route with the suggestion of clonazapam (the same benzo I tapered).  I'm not sure there is much to be gained by treating it as MdDb as opposed to PPPD unless you know of something to the contrary.

 

Thoughts welcome.

 

Andy

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IrishMonkey92
13 hours ago, apace41 said:

 

Not usually a problem when I'm laying down or still.  More annoying when walking.  Never really noticed much of a difference after travel to be honest.  Typically, MdDb would be characterized by someone feeling fine while driving but having a return of symptoms when the car stopped.  In my case, I'm usually okay driving and when stopped but feel it again when I get out of the car to walk to my destination.  Of course, as we know, it's really hard to distinguish all of these syndromes based on the fine details.  I'm not sure that distinguishing between MdDb, Vestibular Migraine, PPPD, etc. really matters all that much because there are no specific treatments based on "what it is" other than things like Topiramate for vestibular migraine.  In essence, I'm not sure there is a meaningful distinction between PPPD and MdDb in terms of symptoms and treatment.

 

I've looked at it from all angles.  Thought about MdDb and had one doctor go that route with the suggestion of clonazapam (the same benzo I tapered).  I'm not sure there is much to be gained by treating it as MdDb as opposed to PPPD unless you know of something to the contrary.

 

Thoughts welcome.

 

Andy

 

Well what’s the longest you’ve travelled by car having this? And you felt no worse after getting out? Yes it’s extremely difficult and I also know personally that the characteristic of having it disappear whilst in motion isn’t unique to MdDS, I know several who definitely have PPPD - got it after a panic attack and some who got it after ear damage, got anxiety, recovered from Vestibular but turned functional, so typical PPPD, and they also have no issues in a car - even though the literature states they’d be worse in a car - that seems true only if they have the visual vertigo component of the disorder (which I’ve been confirmed to not have). I also know a lot of MdDS people who it goes away for in travel. 

 

The issue is though, an accurate diagnosis is crucial to getting better - treatment for normal Vestibular damage, migraine, PPPD and MdDS all differ. Treatment for MdDS is indeed experimental, but the only treatment which has had success (and I’ve seen it in the MdDS facebook groups recovering people), is the treatment by Dr. Dai which has had phenomenal recovery/improvement of 60% so they may have cracked the issue of what MdDS is, read this fully on how to replicate: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4097942/

 

My diagnosis is tough because I’ve had several triggers which apply to all the issues we’ve talked about - I’ve came off antidepressants very suddenly prior to onset, I had a massive panic attack, the day after the panic attack, I was driving for about 2 hours and then stopped... felt like I was still moving/the car was rolling back... I panicked and got out - had about 2 minutes of this horrific sensation that everything zooming in on me and I was going to drop to the floor. After than, the bouncing, wavey floor has been there on and off ever since. 

 

I have one more appointment with a specialist in Dublin who is going to be speaking with her American colleagues who are well versed on MdDS about what they may see my diagnosis as - considering my CPD (Computerised Dynamic Posturography) test I had with her last week was excellent and I’ve actually better balance than 90% of the population - even though I may have MdDS and definitely have had a Vestibular damage of some sort, albeit compensated. Anyway, this specialist will just tease out with a few more tests if it’s MdDS or PPPD and then treatment will either resume or take a new route with Dr. Dai’s treatment which she said she has replicated before in her clinic. 

 

For more information of the fine details of PPPD, how the sensations would be described, and ‘apparently’ how it differs from MdDS is all in here: https://content.iospress.com/download/journal-of-vestibular-research/ves622?id=journal-of-vestibular-research%2Fves622 - go to section 4.4.4.3. Accordingly to this, the only and real measurable difference between PPPD and MdDS is medication response - “A major difference between MdDS and PPPD is the extent of treatment response. MdDS generally has a limited response to vestibular habituation exercises or medi- cations, whereas treatment studies of PPV [86], SMD [42, 92], VV [62, 64], CSD [81], and PPPD, itself [84], showed significant improvements with vestibular habituation or serotonergic antidepressants.” You’ll also read in this section what I mentioned earlier above, which I’ve personally seen, PPPD can go away in motion, so it’s not unique to MdDS. 

 

Furthermore, this doctor gives an explanation of how MdDS differs from PPPD: https://youtu.be/lwuIi45A-Tg it’s worth a listen, and according to him, neither of us have MdDS, as we feel better laying down/still which is seen in PPPD, not MdDS, and we also get better in car, which is also seen in PPPD which he mentions. Can you read all those links/videos I’ve sent when you get the time and get come back to me with your opinions please 

 

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