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

[[La...]]

I've had Labrynthitis for over a year. I was offered yet more pills (anti-sickness drugs) but declined. I go to the gym 2-3 times a week and run 5k on a weekend but cannot participate in activities such as yoga or Pilates due to the laying down, sitting up etc as I get dizzy when I turn my head when laying down, or just laying down brings on a short spell of dizziness. Otherwise I would be doing these. I hope once I'm off benzos the dizziness and tinnitus will go ...

 

Hi NoMorePills,

If you can go to the gym and run 5K, then you're in great shape! Excellent! Some of us are not able to do very much at all, so I would say that you're on of the lucky ones.

 

What caused the labrynthitis? Did they say? How do they make a diagnosis for that? I wonder which medication they wanted to prescribe. Was it betahistine?

[[No...]]

I've had Labrynthitis for over a year. I was offered yet more pills (anti-sickness drugs) but declined. I go to the gym 2-3 times a week and run 5k on a weekend but cannot participate in activities such as yoga or Pilates due to the laying down, sitting up etc as I get dizzy when I turn my head when laying down, or just laying down brings on a short spell of dizziness. Otherwise I would be doing these. I hope once I'm off benzos the dizziness and tinnitus will go ...

 

Hi NoMorePills,

If you can go to the gym and run 5K, then you're in great shape! Excellent! Some of us are not able to do very much at all, so I would say that you're on of the lucky ones.

 

What caused the labrynthitis? Did they say? How do they make a diagnosis for that? I wonder which medication they wanted to prescribe. Was it betahistine?

 

Last summer I had a virus that caused extreme dizziness for 10 days, it got better but not completely. I went back to the GP who diagnosed Viral Labrynthitis when I described my symptoms. When I complained about the nausea etc I was offered meds but GP didn't say which ones as I declined. I'm allergic to some anti sickness meds so didn't want to take the chance of a reaction. I've not been right since the virus last summer. The Tinnitus started the same time as the Labrynthitis.

 

I wouldn't say I'm lucky. I struggle with symptoms daily but refuse to give in to them, unless they're really bad. There have been a few occasions where I've not been well enough to run due to balance issues. I don't overdo things, just do what I can. I'd like to take part in other classes at the gym but am currently unable to due to symptoms.

[[La...]]

Hi NoMorePills,

I understand your feelings about taking pills for that dizziness at this point. I think many of us are very uncomfortable with the risks. I fully agree. Did the doctor say anything about how long the labrynthitis might last?

 

The reason I used the word "lucky" is because I broke a bone in my foot last fall as a result of my benzo dizziness, and I'd already been struggling with extreme pain in my other foot, so I've hardly been able to walk for more than a year. Being able to run or exercise sounds like a dream. It sounds like you're doing an amazing job of keeping strong, and that's really the best thing anyone can do while going through this difficult experience. Women, especially, have to be aware of bone density issues, and not being able to walk (in my case) can have a really bad effect on bones. If you can run, then that's a wonderful way to increase or maintain bone density.

[[No...]]

Hi NoMorePills,

I understand your feelings about taking pills for that dizziness at this point. I think many of us are very uncomfortable with the risks. I fully agree. Did the doctor say anything about how long the labrynthitis might last?

 

The reason I used the word "lucky" is because I broke a bone in my foot last fall as a result of my benzo dizziness, and I'd already been struggling with extreme pain in my other foot, so I've hardly been able to walk for more than a year. Being able to run or exercise sounds like a dream. It sounds like you're doing an amazing job of keeping strong, and that's really the best thing anyone can do while going through this difficult experience. Women, especially, have to be aware of bone density issues, and not being able to walk (in my case) can have a really bad effect on bones. If you can run, then that's a wonderful way to increase or maintain bone density.

 

Sorry to hear about your own troubles Lapis2. I've no idea how long the Labrynthitis will last for? I'm seeing the Dr next week so will ask as I'm fed up with it, but I have a feeling that it may be a side effect of the Mirtazipine I'm on, along with the benzo withdrawal. It all affects the vestibular/balance system. One of my parents had Meniere's Disease so as long as I don't get that I'm ok. I'm hoping once I'm off the meds and have healed these problems will go.

[[La...]]

Yes, I hope so too, NoMorePills. I really hope things settle down for you. My understanding is that all of the psychiatric meds can affect the vestibular system, so it's very possible that the mirtazapine is part of the problem for you. I just looked it up, and indeed, dizziness is on the list of common side effects.

 

Take care! 

[[La...]]

Hi Everyone,

I came across a study on motion sickness that people might be interested in. Note the reference to the three aspects of balance: vestibular, visual and proprioceptive systems, which must all be giving consistent sensory messages at the same time for a person to have proper balance. It is well documented in the medical literature that benzos can adversely affect the vestibular system. Also, there's a mention of the fact that "virtual reality representations" can give people motion sickness. It's something to bear in mind when you're deciding what to watch online.

 

https://www.ncbi.nlm.nih.gov/pubmed/30406755 

 

The Neurophysiology and Treatment of Motion Sickness

 

Koch A1, Cascorbi I, Westhofen M, Dafotakis M, Klapa S, Kuhtz-Buschbeck JP.

 

Author information

 

1

    Naval Institute of Maritime Medicine, Kronshagen, Institute of Experimental Medicine, Section Maritime Medicine Christian-Albrechts-Universität, Kiel; Institute of Experimental and Clinical Pharmacology, University Hospital Schleswig-Holstein, Campus Kiel; Clinic for Otorhinolaryngology and Plastic Surgery of the Head and Throat, RWTH Aachen; Department of Neurology, RWTH Aachen; Institute of Physiology Christian- Albrechts-University, Kiel.

 

Abstract

 

BACKGROUND:

 

Seasickness and travel sickness are classic types of motion illness. Modern simulation systems and virtual reality representations can also induce comparable symptoms. Such manifestations can be alleviated or prevented by various measures.

 

METHODS:

 

This review is based on pertinent publications retrieved by a PubMed search, with special attention to clinical trials and review articles.

 

RESULTS:

 

Individuals vary in their susceptibility to autonomic symptoms, ranging from fatigue to massive vomiting, induced by passive movement at relatively low frequencies (0.2 to 0.4 Hz) in situations without any visual reference to the horizontal plane. Younger persons and women are considered more susceptible, and twin studies have revealed a genetic component as well. The various types of motion sickness are adequately explained by the intersensory conflict model, incorporating the vestibular, visual, and proprioceptive systems and extended to include consideration of postural instability and asymmetry of the otolith organs. Scopolamine and H1-antihistamines, such as dimenhydrinate and cinnarizine, can be used as pharmacotherapy. The symptoms can also be alleviated by habituation through long exposure or by the diminution of vestibular stimuli.

 

CONCLUSION:

 

The various types of motion sickness can be treated with general measures to lessen the intersensory conflict, behavioral changes, and drugs.

[[La...]]

And here's another study to check out! This one's on Mal de Debarquement Syndrome, which appears to include many of the same symptoms that we're all suffering from. There are two identified types: "Motion-Triggered" and "Spontaneous", which may or may not really be "spontaneous". I don't believe ours to be "spontaneous" at all, as it's quite likely due to use of benzodiazepines and/or other psychiatric meds. They all include dizziness on their lists of possible side effects.

 

 

Abstract:

 

https://www.ncbi.nlm.nih.gov/pubmed/30410464

 

Sham-Controlled Study of Optokinetic Stimuli as Treatment for Mal de Debarquement Syndrome

 

Mucci V1,2,3, Perkisas T3, Jillings SD2,3, Van Rompaey V1,2, Van Ombergen A1,2,3, Fransen E3, Vereeck L4,5, Wuyts FL3, Van de Heyning PH1,2,5, Browne CJ6,7.

 

Author information

 

1

    Department of Otorhinolaryngology and Head and Neck Surgery, Antwerp University Hospital, Antwerp, Belgium.

2

    Translational Neurosciences, Faculty of Medicine and Health Sciences, University of Antwerp, Antwerp, Belgium.

3

    Departments of Biomedical Physics, Faculty of Sciences, University of Antwerp, Antwerp, Belgium.

4

    Department of Rehabilitation Sciences and Physiotherapy, Faculty of Medicine and Health Science, University of Antwerp, Antwerp, Belgium.

5

    Multidisciplinary Motor Centre Antwerp (M2OCEAN), University of Antwerp, Antwerp, Belgium.

6

    School of Science and Health, Western Sydney University, Sydney, NSW, Australia.

7

    Translational Neuroscience Facility, School of Medical Sciences, University of New South Wales, Sydney, NSW, Australia.

 

Abstract

 

Introduction: Mal de Debarquement Syndrome (MdDS) is a condition characterized by a perception of self-motion in the absence of a stimulus, with two onset types: Motion-Triggered and Spontaneous. Currently, the pathophysiology is unknown and consequently, the therapeutic options are limited. One proposed treatment protocol, developed by Dai and colleagues is based on optokinetic stimulation, which aims to re-adapt the vestibular ocular reflex. This study aimed to reproduce the treatment protocol developed by Dai and colleagues and to assess if a placebo effect is present in the treatment protocol and lastly, aimed to further investigate the treatment on MdDS patient outcomes.

 

Method: Twenty-five MdDS patients (13 Motion-Triggered and 12 Spontaneous) were exposed to 5 consecutive days of optokinetic treatment (consisting of exposure to optokinetic stimuli with head movements). Eleven of these 25 patients were also exposed to 2 days of a sham treatment prior to the OKN treatment. Posturography measurements and reported symptoms [e.g., using the visual analog scale (VAS)] of patients were assessed throughout the treatment. Posturography data of the patients was compared with the data of 20 healthy controls.

 

Results: No placebo effect was recorded with any changes in postural data and VAS scale. After the optokinetic treatment, a significant improvement in postural control was observed in 48% of patients, of whom 70% were of the Motion-Triggered subtype (p-values: Area under the Curve-Anterior Posterior < 0.001; Area under the Curve-Medio Lateral p < 0.001, Confidence Ellipse Area (CEA) < 0.001, Velocity < 0.001).

 

Conclusion: The protocol was effective in approximately half of the MdDS patients that took part in the study, with no placebo effect recorded. The Motion-Triggered group responded better to treatment than the Spontaneous group. In addition to this, this study indicates that the greatest postural changes occur within the first 3 days of treatment, suggesting that a shorter protocol is possible. Overall, these findings support what was previously observed in Dai's studies, that optokinetic stimulation can reduce and ease self-motion perception in those with MdDS. Thus, validating the reproducibility of this protocol, suggesting that a consistent and uncomplicated implementation across treatment centers is possible.

 

Full Study:

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6210740/

[[...]]

I just skimmed the last abstract, Lap, but that looks very positive, doesn't it?  If my calculation is correct, only 4 out of the 12 "spontaneous" participants saw an improvement, unfortunately, but still it's in the right direction.  I think it's also quite telling because I believe their term "spontaneous" is a misnomer and probably should be renamed.  Am I right in that they're using that term very loosely anyway, in that they could easily diagnose benzo boatiness as Spontaneous MdDS if they didn't know better?  You're more on top of it than I am. 

[[La...]]

Hey abcd,

I think you're right on the math, although it seems like it might be 3 or 4 who were "spontaneous", based on the figures. Strange! But yes, of course, it's great if anyone had improvement of their symptoms with the treatment. It implies that there's some understanding of the mechanism by which people become dizzy, as well as a possible way to help them.

 

And yes, I have to agree with you on the language thing. It's a loose term, at this point. Many things fall into that "spontaneous" category, including surgery, pregnancy and other major stressors. I think medication was named in at least one of the earlier papers as a possible cause.

 

[[La...]]

Here's one more medical journal article to check out. It's an overview of the vestibular system, entitled "Physiology, Vestibular System":

 

https://www.ncbi.nlm.nih.gov/books/NBK532978/#article-31144.s1 

[[L0...]]

My first attempt at a post so hope I’m doing it right. I always feel in the minority because I was prescribed diazepam for a vestibular issue rather than the more common anxiety sleep etc issues. I had been doing vestibular rehabilitation exercises for a month and thought they weren’t working well enough. So accepted a prescription from an ent. He gave me a years worth but I thought I was being smart and tapered it over a “short” total of three weeks - 6mg a day for a week then 4mg a day for a week then 2mg a day for a week and stop. I guess that was a rapid taper/CT. I didn’t realize. I felt a little unusual anxiety toward the end on 2 mg then 7 days after stopping my world started collapsing. Symptom after symptom. By the time I figured out it was withdrawal I reinstated 6mg a day for a week. It didn’t help at all so I stopped (I know know maybe kindled). Now I’m almost debilitated

 

My number one symptom is dizziness. I’m being pushed and pulled constantly whenever I stand or walk. It’s 20 times worse than the slight dizziness I’d been working on with my vestibular issues. To make matters worse my eyes (now relied upon more than ever for balance) got dry, my glasses prescription fluctuates, they seem slow to change focus, and I lost my ability to see at night (my ophthalmology research tells me night vision is the rods and cones at the edge of the retina and they are loaded with Gabba receptors).  I got neuropathy in my feet and my leg muscles have virtually no strength. Extreme fatigue,  Heart palpitations etc.

 

My question is has anyone had such an experience?  I have to get through the w/d before I can address the original vestibular issue. This seem like an impossible task. Vestibular requires movement to adjust the brain to the new condition but the w/d seems to overload my system as soon as I do anything.

 

Just wanted to see if anyone started with a vestibular issue and if they might have some feedback on how w/d affected it. I can’t tell if this os w/d on top of a vestibular issue or if the w/d was ototoxic causing additional damage to the ear and excitotoxic with an overload of glutamate destroying retina cells.

 

First post so sorry if it’s not right.

[[La...]]

Hi Lostboyscout,

Your first post is just fine, so no worries there, although I'm really sorry to hear about what's happened. Just to clarify, how long were you on the medication? Just three weeks in total? Or did you take it for awhile, and then do that rapid taper?

 

You're right in that most of us took benzos for reasons other than vestibular ones, but perhaps someone else will jump in here with their experience. In the meantime, I was wondering if the vestibular rehabilitation was working at all. What was the original diagnosis and what were your symptoms? What did the doctor suggest you could expect from the medication? And was he aware of your desire to get off it? Have you seen him again since you came off it?

 

Sorry to pepper you with all the questions, but it would clarify the picture a bit. The kind of symptoms you're describing sound very much like benzo symptoms, but perhaps they're part of your original diagnosis. I'm curious to know a bit more. Have you had any testing -- before and/or after the medication?

 

I'll wait to hear more, but I would very much like to hear what the ENT said and/or the person who was coaching you on the vestibular rehab.

 

 

[[L0...]]

Basically no one believes I’m having Benzo withdraws because I did take it only for a total of 4 weeks in my life. 3 weeks before initial withdrawal and the one week reinstatement. Everyone says that’s a low dose and a short time but my symptoms are there nonetheless. My fear is abrupt stop and kindle?  Only broken rule.

 

My original vestibular symptom was slight dizziness and difficulty in super markets. It was confirmed by vestibular testing after a bout of bppv. It was moderate and improving with vestibular rehab exercises. But the ent proposed a different approach with medication. I made the call myself to shorten the time I took it. And when I had problems the ent said reinstate and call him in a week. When I called back and said it didn’t help he said maybe you need a neurologist. I felt abandoned so stopped the medication he prescribed. I guess he wanted me to take it for a year. Maybe I should have taken more but I wanted to keep it less than the 2 to 4 weeks.

 

The vestibular symptoms were made way way worse and different (pushing and pulling) and all the other symptoms were completely new. Nothing to do with the original pre medication experience.

 

I’ve been to see many specialty who have cleared me of any deadly disease - MS, ALS etc. they say all the new symptoms are anxiety and I keep trying to explain that obviously I’m anxious but I’m anxious about the new symptoms hitting me out of nowhere. Prior to that I thought I was on the mend. . And my anxiety is a new type I’ve never felt before. I think it’s exaggerated by withdrawal. I’ve not felt this type before.

 

[[L0...]]

Let me also add that my experience with medications is practically zero. I wouldn’t even take a pain killer after a tooth extraction and tried not to even take aspirin. I don’t drink alcohol or smoke. I was a very health conscious person. Taking something like diazepam was a really big departure for me. I will say that it did calm the original vestibular symptoms a bit as advertised. So it had a mildly positive effect and that’s why I thought it might be worth a try. But again I didn’t want to take it too long and I knew I had to “taper” it so I went 6mg/day for a week, 4, 2 off in three weeks. I saw it as a catch 22. You can’t be on it long and you have to taper so I came up with that on my own. In retrospect it must have been the wrong approach?  I’d be very serious to know if anyone else got hit badly like me with what every specialist I see  seems to say shouldn’t be a big problem?  Thank you again for your help.

[[Be...]]

My number one symptom is dizziness. I’m being pushed and pulled constantly whenever I stand or walk. It’s 20 times worse than the slight dizziness I’d been working on with my vestibular issues. To make matters worse my eyes (now relied upon more than ever for balance) got dry, my glasses prescription fluctuates, they seem slow to change focus, and I lost my ability to see at night (my ophthalmology research tells me night vision is the rods and cones at the edge of the retina and they are loaded with Gabba receptors).  I got neuropathy in my feet and my leg muscles have virtually no strength. Extreme fatigue,  Heart palpitations etc.

 

My question is has anyone had such an experience?  I have to get through the w/d before I can address the original vestibular issue. This seem like an impossible task. Vestibular requires movement to adjust the brain to the new condition but the w/d seems to overload my system as soon as I do anything.

 

Just wanted to see if anyone started with a vestibular issue and if they might have some feedback on how w/d affected it. I can’t tell if this os w/d on top of a vestibular issue or if the w/d was ototoxic causing additional damage to the ear and excitotoxic with an overload of glutamate destroying retina cells.

 

 

I'm sorry to hear that your ENT prescribed you such a horrible drug! I experience the exact same pulling/pushing and dizziness. I haven't really noticed dry eyes, but I do get blurred vision quite often. Clonazepam/Klonopin at 6mg a day can cause some nasty withdrawal symptoms. I would venture to say that all of your symptoms, including the more pronounced dizziness, is being caused by the Clonazepam, alone. Have you been diagnosed with Meniere's disease, by chance?

 

[[La...]]

Basically no one believes I’m having Benzo withdraws because I did take it only for a total of 4 weeks in my life. 3 weeks before initial withdrawal and the one week reinstatement. Everyone says that’s a low dose and a short time but my symptoms are there nonetheless. My fear is abrupt stop and kindle?  Only broken rule.

 

My original vestibular symptom was slight dizziness and difficulty in super markets. It was confirmed by vestibular testing after a bout of bppv. It was moderate and improving with vestibular rehab exercises. But the ent proposed a different approach with medication. I made the call myself to shorten the time I took it. And when I had problems the ent said reinstate and call him in a week. When I called back and said it didn’t help he said maybe you need a neurologist. I felt abandoned so stopped the medication he prescribed. I guess he wanted me to take it for a year. Maybe I should have taken more but I wanted to keep it less than the 2 to 4 weeks.

 

The vestibular symptoms were made way way worse and different (pushing and pulling) and all the other symptoms were completely new. Nothing to do with the original pre medication experience.

 

I’ve been to see many specialty who have cleared me of any deadly disease - MS, ALS etc. they say all the new symptoms are anxiety and I keep trying to explain that obviously I’m anxious but I’m anxious about the new symptoms hitting me out of nowhere. Prior to that I thought I was on the mend. . And my anxiety is a new type I’ve never felt before. I think it’s exaggerated by withdrawal. I’ve not felt this type before.

 

Hi LBS,

Thanks for filling in some of the blanks for me. First of all, you've got a lot going for you at this point -- low dose of diazepam, short course, tapered rather than cold turkey, other serious issues ruled out, no other meds, healthy lifestyle, etc. Those are all very, very positive, so keep that in mind.

 

I'll share with you a link that I've posted and re-posted a number of times in this thread, since it may be of use to you. It's from a website on vestibular issues, and according to the authors, "vestibular suppressants" (e.g. benzodiazepines, antihistamines, anticholinergics) might be okay in the very acute phase (5 days, they say), but that further use can make the brain "sleepy" and can therefore be problematic for "vestibular compensation" (or normalization), so they don't recommend them long-term.

 

Have a look here:

 

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

 

How individuals metabolize medications is very individual, with some people being more sensitive to the effects of a medication than others. I'm sorry that no doctor or pharmacist mentioned that, because it's quite well-documented. It's genetic. I don't think you did anything wrong at all. On the contrary, I think you were level-headed and controlled, and you tapered rather than cold-turkeyed, even with a short course of use. Good stuff!

 

I'm so sorry that your anxiety isn't being acknowledged for what it is -- a very normal reaction to very uncomfortable and scary symptoms. Dizziness causes most people anxiety, because they feel "ungrounded" and have trouble walking and doing normal things. Of course, anxiety make sense under such conditions.

 

My layperson's suggestion would be to be as patient as you can and know that you've done, and are doing, all the right things. If you can do the vestibular rehab exercises and they help, they it would make sense to do so. If not, just do your best to stay calm and get through it day by day.

[[La...]]

My number one symptom is dizziness. I’m being pushed and pulled constantly whenever I stand or walk. It’s 20 times worse than the slight dizziness I’d been working on with my vestibular issues. To make matters worse my eyes (now relied upon more than ever for balance) got dry, my glasses prescription fluctuates, they seem slow to change focus, and I lost my ability to see at night (my ophthalmology research tells me night vision is the rods and cones at the edge of the retina and they are loaded with Gabba receptors).  I got neuropathy in my feet and my leg muscles have virtually no strength. Extreme fatigue,  Heart palpitations etc.

 

My question is has anyone had such an experience?  I have to get through the w/d before I can address the original vestibular issue. This seem like an impossible task. Vestibular requires movement to adjust the brain to the new condition but the w/d seems to overload my system as soon as I do anything.

 

Just wanted to see if anyone started with a vestibular issue and if they might have some feedback on how w/d affected it. I can’t tell if this os w/d on top of a vestibular issue or if the w/d was ototoxic causing additional damage to the ear and excitotoxic with an overload of glutamate destroying retina cells.

 

 

I'm sorry to hear that your ENT prescribed you such a horrible drug! I experience the exact same pulling/pushing and dizziness. I haven't really noticed dry eyes, but I do get blurred vision quite often. Clonazepam/Klonopin at 6mg a day can cause some nasty withdrawal symptoms. I would venture to say that all of your symptoms, including the more pronounced dizziness, is being caused by the Clonazepam, alone. Have you been diagnosed with Meniere's disease, by chance?

 

He took diazepam, Benz. 6 mg of clonazepam would be brutal. 6 mg of diazepam is not very high, comparatively speaking. For my cross-over, I took a maximum of 8 mg of diazepam and tapered from there, equivalent to less than 1 mg of clonazepam, depending on which chart you use.

[[L0...]]

Thank you very much for the information and the words of encouragement. Originally I didn’t have the symptoms of Ménière’s disease so that was not the initial diagnosis. It was slight vestibular hypofunction in one ear.  And you’re quite correct it was diazepam I was taking.

 

One thing the drs keep saying is if it were w/d the symptoms would have disappeared after I reinstated at 6mg of diazepam for a week. I have to admit that does sound logical. But perhaps 10 days having passed since I stopped the first time was too long for it to work again. Or the damage had been done. I’m curious if anyone else did a reinstatement with no effect. I wish I hadn’t cause it sort of counts as a kindle.

 

Anyway it’s very nice to hear that my situation on paper doesn’t look too bad in comparison to many but boy the consequences feel even worse than many of the very bad w/d’s I’ve read about here. I’m completely debilitated with dizziness and a dozen other symptoms. Thank you again for responding.

[[L0...]]

BTW I’ve been reading as much of this string as I can from the beginning to catch up. I was curious after this much time have people reported that these dizziness symptoms have finally gone away?  A common theme here is it all heals eventually but I’m curious if over the past few years people you’ve corresponded with have actually reported the dizziness symptom resolving. Would be encouraging to know if it’s happening out there for real. Thanks!!

[[La...]]

Thank you very much for the information and the words of encouragement. Originally I didn’t have the symptoms of Ménière’s disease so that was not the initial diagnosis. It was slight vestibular hypofunction in one ear.  And you’re quite correct it was diazepam I was taking.

 

One thing the drs keep saying is if it were w/d the symptoms would have disappeared after I reinstated at 6mg of diazepam for a week. I have to admit that does sound logical. But perhaps 10 days having passed since I stopped the first time was too long for it to work again. Or the damage had been done. I’m curious if anyone else did a reinstatement with no effect. I wish I hadn’t cause it sort of counts as a kindle.

 

Anyway it’s very nice to hear that my situation on paper doesn’t look too bad in comparison to many but boy the consequences feel even worse than many of the very bad w/d’s I’ve read about here. I’m completely debilitated with dizziness and a dozen other symptoms. Thank you again for responding.

 

Hi LBS,

Yes, dizziness is a really debilitating symptom -- agreed 1000%! I'm just really hopeful that, in your case, it won't go on too long, based on everything you've said. So much positive in there. Since benzodiazepines are vestibular suppressants, they can be problematic -- in large doses and small. I'm not familiar enough with kindling and reinstatement to know whether it's a major factor in your case. It may just be how you metabolize this particular medication. It would be pretty hard for anyone to nail down anyway. I would think that the best way of looking at it is that you're off the medication, you weren't on much and you were on it a short time, and every day that passes is one more day that your brain is trying to normalize.

 

And yes, people do get better from this! Some people come back to tell us and some people just disappear. Some people write Success Stories and mention dizziness as one of the symptoms that left at a certain point, but others just lump all of their symptoms together and say "You know what I"m talking about, so I won't spell it out." It's surely one of the big frustrations around here that we don't have solid data to share with one another, but it would be impossible to gather. People come and go on BB, and there's no requirement to report in on a regular basis, or to report back after leaving.

 

If you read the Success Stories, you'll see that some people were on the meds for many, many years. And some took multiple meds (like me), but yet, they're writing their stories and saying they're better.

Another thing to keep in mind: Even animals can get dizzy...and then get better! I've read studies about cats, dogs and birds whose brains normalize after a vestibular issue.

 

All I can say is it's best to stay positive, and stay as strong and functional as you can. You've got so much going for you!

[[L0...]]

Thank you so much for the help with my first post. It’ll encourage me to interact more rather than just read on the site. Thank you again and best of luck with your recovery!

[[La...]]

You're welcome, LostBoyScout! Stay in touch and let us know how it's going. Thanks for the good wishes, too!

[[Am...]]

hello, I stopped benzo 16 months ago. I never felt dizzy before. They started yesterday. it's not the vertigo where everything turns but I can not stand long standing my legs are like cotton.

it does that to me all day long. Is it normal for this symptom to begin? is it possible that it is the withdrawal? so late after leaving benzo?

 

[[La...]]

Hi Amandine,

You don't have a signature, so I have no idea what you took, how long, when/how you tapered, etc. Are you taking any medications now? It does seem unusual for dizziness to start months and months after cessation, but again, you didn't give much info, so I would wonder about any other causes. Dizziness has many, many causes, and psychiatric meds are just one possible cause. Other meds can cause balance problems (look up "ototoxic" for a list of meds that affect ears and balance), as can blood pressure issues (low and high), various vestibular issues, alcohol, etc.

 

If you're at all concerned, I would get things properly checked by a medical professional. It's the prudent thing to do. Take care!

[[of...]]

I’ve posted in here before but think it got lost. Can somebody please read the new topic I started and offer any hope. I’m so desperately hopeless from this symptom.  :'(