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

[[La...]]

Hi NoMeaning,

They did studies on monkeys to try to figure out the mechanism by which people get MdDS after being on  a boat (or other means of travel). It had to do with the constant motion that the body experiences over the course of the trip and changes in the vestibular system. They were able to come up with a treatment that helped a certain percentage of people with this issue, but it wasn't as helpful for those who acquired MdDS by the non-motion-triggered means. They're not even sure it's the same issue, yet the symptoms are similar. We posted the studies on here quite awhile ago when they came out, and I could track them down, if you're interested in reading the details.

 

Here's a link from a 2014 press release from Mt. Sinai, NYC:

 

https://www.mountsinai.org/about/newsroom/2014/new-treatment-successful-for-rare-and-disabling-movement-disorder-the-mal-de-debarquement-syndrome-mdds

 

And here's a link to the NYC clinic where they're doing some treatments:

 

http://mdds.nyc/ 

 

There's further literature, if you want to check it out, including four new studies that were recently shared on this thread since the beginning of 2018.

 

 

While some dizziness has a psychological basis (e.g. anxiety, fear), other dizziness is routed in physiological causes. There are many, many causes of dizziness, and it's one of the most common reasons why people go to the doctor or emergency. Bear in mind that there are at least eight neurotransmitters involved in the functioning of the vestibular system, so when you mess with those (e.g. via medication), you can be changing the way that very sensitive system works. Other causes of dizziness are quite serious, which is why I think people should always get it checked out if they're unsure as to the cause of it. Some of it can be treated easily, but other dizziness reflects deeper physiological issues that need to be dealt with through medical attention.

 

 

 

[[No...]]

Problem is treatment for most if not all dizziness is either AD or a benzo or combination so cant get relief either way. Only other solution is VRT I guess. Ill get mine checked out properly though but i know it would be pointless

 

Polenta said her boat dizziness went away after 4-5 years so ill hold on to that

 

 

[[No...]]

Scared to fly in this condition what if i develop mdds 😲😲

 

[[La...]]

Have you considered taking the train?

[[No...]]

There are no trains here. The flight is about 95 minutes. I can let someone drive me but its 18 hours

[[La...]]

A couple of things:

If you're really hesitant to travel, can you speak to whomever is involved (work/family/etc) in order to explain your situation? Can something be done via skype instead? Can it be postponed until a later date?

 

If not, and you do have to do it, remember that MdDS is more often associated with boating. I grew up sailing, canoeing and, later, kayaking  and never EVER had it in all of my years on the water. It's quite uncommon. However, if you're already dizzy from your benzo, then travelling might be challenging. On the other hand, many of us find that when we're in motion, we notice less dizziness, not more. It's very individual, though.

 

The other thing to do is to stay as positive as you can, NoMeaning. It can only help. Maybe some of our other dizzy buddies will jump in with their advice and suggestions too.

[[La...]]

Problem is treatment for most if not all dizziness is either AD or a benzo or combination so cant get relief either way. Only other solution is VRT I guess. Ill get mine checked out properly though but i know it would be pointless

 

Polenta said her boat dizziness went away after 4-5 years so ill hold on to that

 

Well, those meds are not indicated for dizziness, really. Apparently, some people find them helpful, but they both list dizziness as a side effect too, so it's not really logical. Benzos are used in the very short term sometimes for BPPV, but they are not indicated for long-term use. Betahistine is used for Meniere's and some other types of dizziness, but again, it depends on the cause of the problem. I was given it early on, but it did nothing.

 

Benzos interfere with the normal process of vestibular compensation, so those of us who have taken them for long periods of time have effectively been suppressing our vestibular systems during that period. What makes sense is giving the brain a rest and allowing it to normalize without another medication.

 

VRT can be helpful in some cases, so it's worth getting a proper assessment. I did that early on too and went through two three-month courses of exercises (five times a day). I don't think it hurt, but I can't say it helped either. It probably didn't address the type of dizziness I have. The assessment should reveal any deficits and determine which exercises are appropriate. It's a highly individualized process, whereby the therapist follows you and adjusts the program as needed.

[[wi...]]

Hi, I hit a wave 3 months ago for the first time which is acute. Extreme Dizziness and chest pressure.

housebound/bedbound for the whole 3 months, feels like I'm dying and it's everyday and the whole day.

it did not get remotely better for the whole 3 months.

for anyone that had acute wave with such as mine, how long did it take for you till it went away?

[[La...]]

Hi, I hit a wave 3 months ago for the first time which is acute. Extreme Dizziness and chest pressure.

housebound/bedbound for the whole 3 months, feels like I'm dying and it's everyday and the whole day.

it did not get remotely better for the whole 3 months.

for anyone that had acute wave with such as mine, how long did it take for you till it went away?

 

Hi winds2,

I'm hoping others will chime in here too, but my pattern is more of an every-other-day pattern of better day/worse day when it comes to this symptom. I sometimes have two bad days in a row, but so far, I haven't really had two better days in a row. That's just me, and I know everyone is different on this one. Some people have longer stretches of good days or certain times of the day that are better, etc. It seems to be all over the map.

 

I just wanted to suggest something. You mentioned that you sometimes stay in bed, but bear in mind that that can make a person quite weak and more prone to dizziness. The vestibular system needs to be challenged and used, and if you don't try to move at all or you lie down a lot, then it can be problematic. If you need a cane or walker or something so that you can stay mobile, please consider that. If you do some light exercises, e.g. in a chair or lying down or on a stationary bike or treadmill, then that's a good thing. It's much easier to maintain muscle than it is to build it up again. Have you considered seeing a physical therapist with vestibular rehabilitation training? Maybe s/he could help and give you some guidance about how to get through it.

 

 

[[wi...]]

Hey,

 

Thanks for replying. But my dizziness isn’t something that comes and goes.. it’s a matter of if I hold it back or not. it’s not like I take a rest and it goes away either. If the harmony/balance of my brain gets off its way somehow, then it’s triggered. It’s not  something I can work on/fight against either. I do try to take a walk when I can. waiting on some more replies from who relate to this..

[[La...]]

Hey Winds,

I've had some pretty nasty waves in my time, too, so I know exactly what you're describing (post SSRI-withdrawal, in my case). It can be relentless, and then, suddenly, it can improve. I hope that happens for you as soon as possible.

 

This type of dizziness doesn't appear to be the "rest and it will go away" type, so it's a matter of taking care of oneself and getting through it the best we can.

[[Bi...]]

Hey BigSky,

I totally agree. It's really, REALLY difficult to deal with the inconsistencies and unknowns of this roller-coaster ride. I've been charting my dizziness levels for a long time to see if there might be any patterns, but it's hard to see any. I tend to get that every-other-day pattern, but not always.

 

Anyway, if you've identified some things that you know make things worse for you (coffee, chocolate), the it certainly makes sense to minimize your intake in order to see if you feel better. Sleep is obviously a major help, if you can get it, but of course, benzos interfere with the depth of sleep too, so there's another catch-22 there.

 

What's your plan, at this point? Will you keep holding, or are you planning to keep going with your taper?

 

My plan is to hold for another couple months I think. I get in to see the neurologist this week. See what she says and go down that path. Continuing the PT. I definitely have an idea of things that make it worse but not all are avoidable. Once I have ruled out any non-benzo related reasons I will have to figure out what to do. Hold and see if my brain finally catches up or go down some more in the thought that the benzo is causing the dizziness. I'm leaning more towards the former just knowing how sensitive my body has been and the higher likelihood in my opinion that it is my brain lagging behind the dose reductions considering I have never had this intensity and longevity of these symptoms despite being on benzos for most of the prior decade. After a few excruciating months I am starting to have some lower symptom days and they seem to be more frequent. I just wish it would hurry up and catch up so I could enjoy life again.

[[La...]]

Hi BigSky,

Please let us know how that neurology appointment goes. I, too, saw a neurologist, and everything checked out fine. He also gave me some very useful info that I've reflected on numerous times since I saw him (quite awhile ago now). He said the vestibular system is highly sensitive and finely tuned, and if it's off even a little bit, one can feel dizzy. He also said that we don't have the means to test it to the degree that we would like at the present time. Now, this was a few years ago, so I'm not sure if there have been any major advances in testing, but knowing that helped me understand things much better. The fact that many of us have testing that comes back "normal" despite our floaty-boaty dizziness is evidence of exactly what he said.

 

Just wondering...what made you decide to start tapering your diazepam last year? Did something happen? 

 

In the meantime, I'm really glad to hear that you've had some better days. That's excellent! I do hope they continue.

 

 

 

 

[[La...]]

Hi Everyone,

I'd like to re-post this info about vestibular suppressant medication (i.e. benzodiazepines, antihistamines, anticholinergics) and their effects on balance from a website called vestibular.org.

 

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).

 

medication for vestibular disordersDuring 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.

 

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

 

There's also a brief section on vestibular suppressants on the website of the American Physical Therapy Association, but it doesn't copy-and-paste very well, so I'll just put in the link here. It echoes what is said above, and concludes that "the  recommendation  to  decrease  and  eliminate  vestibular  suppressants  has  been well  documented  in  the  literature."

 

 

http://www.neuropt.org/docs/vsig-physician-fact-sheets/medications-and-dizziness.pdf?sfvrsn=b13f10b0_2

[[La...]]

I'd also like to post a link to Dr. Timothy Hain's article called "Benzodiazepines in dizziness -- what is the data ?", which was updated in November 2017. Here are the opening paragraphs:

 

The benzodiazepines are a family of sedating medications used both for treatment of anxiety and vertigo. The purpose of this page is to review current evidence regarding the effects of benzodiazepines on vestibular function. The bottom line is that there is little experimental data, and that current dogma (not well substantiated) is that benzodiazepines suppress vestibular responses and also suppress compensation.

 

Before beginning, lets acknowledge that benzodiazepines are addictive substances, and are a source of considerable passion on both sides of the issue regarding their utility for many purposes. Much of this page involves opinions of the author, Dr. Hain, who is a experienced clinician who treats dizziness. It is important to realize that in situations like this, there will be many different opinions.

 

Background and quick overview:

 

    Commonly prescribed benzodiazepines include diazepam (Valium), lorazepam (Ativan), Clonazepam, alprazolam (Xanax) and many others. These drugs are largely used to treat anxiety, but also are used to induce sleep, and a variety of other purposes largely involving suppression of the nervous system. They generally are not toxic, in the sense that they generally do not damage organ systems, but also generally are associated with addiction and tolerance.

 

    Benzodiazepines are GABA modulators, acting centrally to suppress vestibular responses. They increase the affinity of chloride channel opening (Soto et al, 2013). There are differential effects across benzodiazepines on Gaba-A receptor subtypes. In small doses, these drugs are extremely useful. Addiction, impaired memory, increased risk of falling, and possibly impaired vestibular compensation are their main shortcomings.

 

    Lorazepam and Clonazepam are a particularly useful agents when treating dizziness because of their effectiveness and simple kinetics. Addiction, the biggest problem, can usually be avoided by keeping the dose to 0.5 mg twice/day or less (see discussion below). Other problems include higher incidence of car accidents (risk x1.5), and hip fractures (risk x 1. (Ray, Griffin et al. 1987; Ray, Fought et al. 1992). Fall risk is increased in the elderly by roughly the same proportions.

 

    Nevertheless, low doses of diazepam (Valium) (2 mg) can be quite effective for dizziness. Clonazepam (Klonopin), is as effective a vestibular suppressant as lorazepam (Ganaca et al, 2002). The author prefers to avoid use of alprazolam (Xanax) for vestibular suppression, because of the potential for a difficult withdrawal syndrome. Long acting benzodiazepines are not helpful for relief of vertigo.

 

 

It's definitely worth reading. Here's the link to the entire document:

 

https://www.dizziness-and-balance.com/treatment/drug/benzodiazepines%20in%20vertigo.html

 

 

[[Bi...]]

Hi BigSky,

Please let us know how that neurology appointment goes. I, too, saw a neurologist, and everything checked out fine. He also gave me some very useful info that I've reflected on numerous times since I saw him (quite awhile ago now). He said the vestibular system is highly sensitive and finely tuned, and if it's off even a little bit, one can feel dizzy. He also said that we don't have the means to test it to the degree that we would like at the present time. Now, this was a few years ago, so I'm not sure if there have been any major advances in testing, but knowing that helped me understand things much better. The fact that many of us have testing that comes back "normal" despite our floaty-boaty dizziness is evidence of exactly what he said.

 

Just wondering...what made you decide to start tapering your diazepam last year? Did something happen? 

 

In the meantime, I'm really glad to hear that you've had some better days. That's excellent! I do hope they continue.

 

I saw the Neuro today and she frankly said there isn't much they can do. She is referring me for an mri but to my she seemed to think it is the valium. I tend to lean that way but I want to be sure so I can figure out the game plan for the rest of my taper. She like yours mentioned that our medical ability to do much for dizziness is pretty limited and that is partly due to the lack of good testing. As I posted in another thread I might be almost somewhat relieved if the mri shows something but on the other hand it could mean serious surgery or whatnot. Catch 22. She of course advocates continuing my taper. But I said that would most likely mean quitting my job if things went back to how they were a few months ago. As much as not working would take a huge amount of stress off me, I support my wife and kid. So not much of an option. If I could get back to the functional level I was at nine months ago at this same dose I would be ecstatic at this point as much as I disliked it then. But despite going back to that dose for going on three months it eludes me. The only other medication I was on at that time was about 10mg of amitriptyline which is considered a very very low dose.

 

I get the whole brain isn't going to work right while healing, I just need a level of function that is livable while it is doing that. I also recognize that the work I am doing with the vestibular exercises is probably being somewhat blocked from helping by the valium. Assuming there is an issue beyond the valium.

 

I decided I needed off these medications because I felt like I was beholden to them and they were doing more harm than good.I wasn't the same person I used to be.

 

[[La...]]

Hi BigSky,

Good to hear from you and thanks for the update. So, it seems that you've answered my question about vestibular testing, in that it likely hasn't changed much since I saw a neurologist a few years ago. It's good news that there's been nothing serious found thus far, but I know that doesn't make this load easier to bear right now. An MRI is probably a good idea in order to rule out certain other things.

 

In your update, I think there's a word missing where you were describing your reaction to the doctor's suggestion that your dizziness is likely caused by the Valium. Did you mean "surprise"? Or something else?

 

I think we can all relate to that massive frustration with the variability of the symptoms. It makes it pretty hard to plan one's life. It's just part of the nasty reality of benzodiazepine withdrawal.

 

By the way, "More harm than good" is the name of a conference that took place in England a couple of years ago, and it focused on psychiatric medications. It was excellent! The UK is definitely ahead of us in understanding the deleterious role that these meds can play.

[[an...]]

Well, I went and got a bunch of eye test and physical therapy tests finally and was diagnosed with visual vertigo, visual snow syndrome, chronic persistent dizziness and visual motion sensitivity. I am doing vestibular rehab for it and will report back in 6 months to tell you if it works or not. I did have a few concussions in my history so I am not sure if this is all benzos or not. I do know that I have had zero improvements in my visual symptoms in 2.5 years since I've been off. The dizziness has improved over the years but my eyes are HORRIBLE and contribute to the dizziness and so many other things.

[[Bi...]]

Well, I went and got a bunch of eye test and physical therapy tests finally and was diagnosed with visual vertigo, visual snow syndrome, chronic persistent dizziness and visual motion sensitivity. I am doing vestibular rehab for it and will report back in 6 months to tell you if it works or not. I did have a few concussions in my history so I am not sure if this is all benzos or not. I do know that I have had zero improvements in my visual symptoms in 2.5 years since I've been off. The dizziness has improved over the years but my eyes are HORRIBLE and contribute to the dizziness and so many other things.

 

Hopefully the therapy will help. It seems to have helped me some. He has also given me tips on how to do certain movements to try to not trigger the symptoms as much. Though I am not to use those all the time as that inhibits the brain from adjusting to the physical issue potentially causing the symptoms. Good luck. In my biased opinion this is the worst symptom because there are so many things that can cause dizziness. And very few to no tests that can exactly pin point the cause like there are for other symptoms.

[[Bi...]]

Hi BigSky,

Good to hear from you and thanks for the update. So, it seems that you've answered my question about vestibular testing, in that it likely hasn't changed much since I saw a neurologist a few years ago. It's good news so far that there's been nothing serious found thus far, but I know that doesn't make this load easier to bear right now. An MRI is probably a good idea in order to rule out certain other things.

 

In your update, I think there's a word missing where you were describing your reaction to the doctor's suggestion that your dizziness is likely caused by the Valium. Did you mean "surprise"? Or something else?

 

I think we can all relate to that massive frustration with the variability of the symptoms. It makes it pretty hard to plan one's life. It's just part of the nasty reality of benzodiazepine withdrawal.

 

By the way, "More harm than good" is the name of a conference that took place in England a couple of years ago, and it focused on psychiatric medications. It was excellent! The UK is definitely ahead of us in understanding the deleterious role that these meds can play.

 

Sorry was writing on my cell. I think what I was trying to say was just to me it seemed like she is pointing the finger at the Valium. So the my should have been me.

[[La...]]

Well, I went and got a bunch of eye test and physical therapy tests finally and was diagnosed with visual vertigo, visual snow syndrome, chronic persistent dizziness and visual motion sensitivity. I am doing vestibular rehab for it and will report back in 6 months to tell you if it works or not. I did have a few concussions in my history so I am not sure if this is all benzos or not. I do know that I have had zero improvements in my visual symptoms in 2.5 years since I've been off. The dizziness has improved over the years but my eyes are HORRIBLE and contribute to the dizziness and so many other things.

 

Hi ang1111,

I'm glad you got the testing and that you're getting some help. Great to hear that! I really hope the vestibular rehab helps, as there's much evidence for its usefulness with certain kinds of dizziness. Do stay in touch and let us know how it goes.

 

This is exactly why I think it's important that people get things checked out. While some issues may be caused by benzos, there's always the chance that something else may be going on which requires specific treatment. Dizziness has so many causes.

[[an...]]

Well, I went and got a bunch of eye test and physical therapy tests finally and was diagnosed with visual vertigo, visual snow syndrome, chronic persistent dizziness and visual motion sensitivity. I am doing vestibular rehab for it and will report back in 6 months to tell you if it works or not. I did have a few concussions in my history so I am not sure if this is all benzos or not. I do know that I have had zero improvements in my visual symptoms in 2.5 years since I've been off. The dizziness has improved over the years but my eyes are HORRIBLE and contribute to the dizziness and so many other things.

 

Hopefully the therapy will help. It seems to have helped me some. He has also given me tips on how to do certain movements to try to not trigger the symptoms as much. Though I am not to use those all the time as that inhibits the brain from adjusting to the physical issue potentially causing the symptoms. Good luck. In my biased opinion this is the worst symptom because there are so many things that can cause dizziness. And very few to no tests that can exactly pin point the cause like there are for other symptoms.

 

It's terrible because I can't watch tv, can barely read, can't do escalators or elevators. The doctor said basically that my brain is relying on my eyes for balance instead of using the vestibular system, so we have retrain that. What that basically means is that any tiny movement i see or if I move, it throws my equilibrium off. Try walking down the aisle of a supermarket with all the patterns and lines. My brain can't make sense of it. If my eyes are open, I am affected. I have never had a break from these symptoms and they make most things impossible. Yet, somehow I am functional like this. It's crazy

[[La...]]

Hi ang,

Did the doctor explain what caused it?

[[La...]]

Hi BigSky,

Good to hear from you and thanks for the update. So, it seems that you've answered my question about vestibular testing, in that it likely hasn't changed much since I saw a neurologist a few years ago. It's good news so far that there's been nothing serious found thus far, but I know that doesn't make this load easier to bear right now. An MRI is probably a good idea in order to rule out certain other things.

 

In your update, I think there's a word missing where you were describing your reaction to the doctor's suggestion that your dizziness is likely caused by the Valium. Did you mean "surprise"? Or something else?

 

I think we can all relate to that massive frustration with the variability of the symptoms. It makes it pretty hard to plan one's life. It's just part of the nasty reality of benzodiazepine withdrawal.

 

By the way, "More harm than good" is the name of a conference that took place in England a couple of years ago, and it focused on psychiatric medications. It was excellent! The UK is definitely ahead of us in understanding the deleterious role that these meds can play.

 

Sorry was writing on my cell. I think what I was trying to say was just to me it seemed like she is pointing the finger at the Valium. So the my should have been me.

 

Thanks for the clarification, BigSky.

[[Bi...]]

I have my mri scheduled for next week. I get anxiety about being in a place i can't just leave when I want so I'm not looking forward to it. Need to know though so have to find a way through it.