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

[[br...]]

Hi,

 

Has anyone had issues with fluid behind the ear drums since withdrawing? Three years ago, a few months after my first taper off Clonazepam, I developed tinnitus and objective pulsatile tinnitus. At the end of 2018 after a train ride and after catching some sort of virus, the dizziness came on. It was relentless at first I could not do anything or even move around the house without help. It got to a point where I could move around with a cane and eventually I could walk without it and drive short distances. If I'm driving and I have to come to a stop, it is such an awful feeling, it seems like if I'm in motion I'm ok. Docs can't find anything wrong with my vestibular system. Since the end of 2018, I started getting "sinusitis" infections and have been told several times I have fluid behind the eardrum. My recent infection caused me to feel awfully dizzy and I'm back to not driving at all and walking with a cane. Did anyone else have these physical symptoms while tapering off Benzos? This fluid build up and these sinus infections are getting intolerable. Thank you. As always, I'm not looking for medical advice and I will continue to go to doctors to find a physical cause. I'm just curious if anyone has a similar story and if they had any luck figuring out what was going on even if it is not benzo withdrawal related.

[[La...]]

Hi,

 

Has anyone had issues with fluid behind the ear drums since withdrawing? Three years ago, a few months after my first taper off Clonazepam, I developed tinnitus and objective pulsatile tinnitus. At the end of 2018 after a train ride and after catching some sort of virus, the dizziness came on. It was relentless at first I could not do anything or even move around the house without help. It got to a point where I could move around with a cane and eventually I could walk without it and drive short distances. If I'm driving and I have to come to a stop, it is such an awful feeling, it seems like if I'm in motion I'm ok. Docs can't find anything wrong with my vestibular system. Since the end of 2018, I started getting "sinusitis" infections and have been told several times I have fluid behind the eardrum. My recent infection caused me to feel awfully dizzy and I'm back to not driving at all and walking with a cane. Did anyone else have these physical symptoms while tapering off Benzos? This fluid build up and these sinus infections are getting intolerable. Thank you. As always, I'm not looking for medical advice and I will continue to go to doctors to find a physical cause. I'm just curious if anyone has a similar story and if they had any luck figuring out what was going on even if it is not benzo withdrawal related.

 

Hi,

Thanks for sharing your story. In my case, all of my tests came back "normal", but I still had disequilibrium, e.g. a feeling of being on a boat or in a current in the water, plus ongoing tinnitus (a hissing sound in my left ear). I tried a few different things, but they didn't help.

 

In your case, though, did they explain why they couldn't help with this "fluid build-up" or the sinusitis infections? Did you need antibiotics? Or Betahistine? Did you get a second opinion? Dizzziness has numerous causes, so it can be really hard to get to the bottom of it.

 

 

[[br...]]

I went to an allergist earlier this year. Supposedly I am not allergic to any common environmental allergens. He did say my pneumococcal titers were low and gave me an injection. He said it might take six months to work. It has also been suggested by an ENT that I might have eustachian tube disfunction. This latest infection happened a month after the injection. For the infection they gave me amoxicillin with clavulanate potasium. Also an antihistamine for the dizziness. I just got done taking the antibiotic today. I feel improved but not a hundred percent. I still feel like I have fluid behind my eardrums. I don't like taking antibiotics but I am scared now that I am off of it that the dizziness and nausea will come back with a vengeance.

[[Gy...]]

Hi,

 

Has anyone had issues with fluid behind the ear drums since withdrawing? Three years ago, a few months after my first taper off Clonazepam, I developed tinnitus and objective pulsatile tinnitus. At the end of 2018 after a train ride and after catching some sort of virus, the dizziness came on. It was relentless at first I could not do anything or even move around the house without help. It got to a point where I could move around with a cane and eventually I could walk without it and drive short distances. If I'm driving and I have to come to a stop, it is such an awful feeling, it seems like if I'm in motion I'm ok. Docs can't find anything wrong with my vestibular system. Since the end of 2018, I started getting "sinusitis" infections and have been told several times I have fluid behind the eardrum. My recent infection caused me to feel awfully dizzy and I'm back to not driving at all and walking with a cane. Did anyone else have these physical symptoms while tapering off Benzos? This fluid build up and these sinus infections are getting intolerable. Thank you. As always, I'm not looking for medical advice and I will continue to go to doctors to find a physical cause. I'm just curious if anyone has a similar story and if they had any luck figuring out what was going on even if it is not benzo withdrawal related.

 

Hi Brokencrystal

 

I know exactly what you are going through, back in 2016 I was on both diazepam and amitriptyline. I decided to taper off the Ami as when I was put on it I started having ear problems, I had a clear fluid leaking out my ears like water and no one could figure out why. After a while when the Ami was really in my system that went away but then I had really dry itchy ears, long story short when I got down to 12.5mg of Ami my ears started with fullness then I was misdiagnosed with a TIA then given a massive dose of aspirin which set the tinnitus roaring and then the dizziness/vertigo set in. I had all types of testing and even an MRI which showed nothing. So I just put up with it and continued to taper off the Ami which took till the end of 2017.

Every specialist tried to tell me it was anxiety causing the dizziness, but it never went away.

Last year I came across a lady called Joey Reminyi who is an audiologist and has a website called seeking balance international , she deals with all sorts of ear problems with the ears including vertigo, bppv etc. Her program is expensive but she also has a lot of free you tube videos than you can look at.

I have made more progress with her program than anything else. It’s not a miracle cure but it does make a difference if you commit.

Unfortunately these medications that we are/were on have sometimes done damage to our vestibular system, but with retraining we can recover. The brain can relearn neural pathways and we can rewire it.

 

Hope this helps

 

Gypsy

[[La...]]

Thanks for sharing that resource, Gypsygal! I'm going to check that out later on.

 

Brokencrystal, it sounds like your situation is in flux, but hopefully, with a bit more time, things will settle down. Do you have a follow-up appointment booked at some time? With the pandemic situation, are you able to be seen in person?

[[br...]]

Thanks Gypsy! I'm so sick of docs pinning everything on anxiety!!! I plan on checking out that website and youtube. I hope your condition continues to improve!

 

Lapis2. Thank you for you concern. I do have an appointment to see an ENT next month but I can't say I expect anything to come out of it. I haven't had a lot of luck with ENTs, it is kind of like what Gypsy was talking about, I think they don't take me serious enough but I'll keep my fingers crossed. I do think there are a handful of docs here and there that do care and will listen. I just wish they were not so hard to find.

[[Gy...]]

Thanks Gypsy! I'm so sick of docs pinning everything on anxiety!!! I plan on checking out that website and youtube. I hope your condition continues to improve!

 

Lapis2. Thank you for you concern. I do have an appointment to see an ENT next month but I can't say I expect anything to come out of it. I haven't had a lot of luck with ENTs, it is kind of like what Gypsy was talking about, I think they don't take me serious enough but I'll keep my fingers crossed. I do think there are a handful of docs here and there that do care and will listen. I just wish they were not so hard to find.

 

Brokencrystal and Lapis2

 

Just thought I would place a link here

 

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

 

At the top there is free resources which gives explanations etc.

 

Hope you find it helpful

 

Gypsy

[[La...]]

Thanks very much, Gypsy. I'll have a look. I did a lot of vestibular rehabilitation therapy, but it didn't help me. I'll have a look at some point soon and see if this website is suggesting something different for the symptoms I have. I don't have vertigo, but I do have tinnitus. My dizziness would be better described as "disequilibrium", since there's no spinning and no motion-triggered symptoms. It's just there -- worse on some days, better on others -- with no known trigger.

[[Ho...]]

Thanks very much, Gypsy. I'll have a look. I did a lot of vestibular rehabilitation therapy, but it didn't help me. I'll have a look at some point soon and see if this website is suggesting something different for the symptoms I have. I don't have vertigo, but I do have tinnitus. My dizziness would be better described as "disequilibrium", since there's no spinning and no motion-triggered symptoms. It's just there -- worse on some days, better on others -- with no known trigger.

 

Lapis, You have been off for over 6 years and still have this.?.?  That’s both scary and depressing! I’m sorry this is still happening to you!  I’m 16 months off and have all of what you described and more.  And they say we all heal.... pffft

[[La...]]

Thanks very much, Gypsy. I'll have a look. I did a lot of vestibular rehabilitation therapy, but it didn't help me. I'll have a look at some point soon and see if this website is suggesting something different for the symptoms I have. I don't have vertigo, but I do have tinnitus. My dizziness would be better described as "disequilibrium", since there's no spinning and no motion-triggered symptoms. It's just there -- worse on some days, better on others -- with no known trigger.

 

Lapis, You have been off for over 6 years and still have this.?.?  That’s both scary and depressing! I’m sorry this is still happening to you!  I’m 16 months off and have all of what you described and more.  And they say we all heal.... pffft

 

Hi Hopper,

Yeah, it's been a really rough ride for me. I suspect that the multiple medications I was on have played a big role, along with hormonal changes that I'm clearly undergoing as a woman in her 50s. I've come across quite a few studies on a type of dizziness that mostly affects women, and I really think that's what's happening in my case. I've posted about this before and included links to studies.

[[Ho...]]

Thanks very much, Gypsy. I'll have a look. I did a lot of vestibular rehabilitation therapy, but it didn't help me. I'll have a look at some point soon and see if this website is suggesting something different for the symptoms I have. I don't have vertigo, but I do have tinnitus. My dizziness would be better described as "disequilibrium", since there's no spinning and no motion-triggered symptoms. It's just there -- worse on some days, better on others -- with no known trigger.

 

Lapis, You have been off for over 6 years and still have this.?.?  That’s both scary and depressing! I’m sorry this is still happening to you!  I’m 16 months off and have all of what you described and more.  And they say we all heal.... pffft

 

Hi Hopper,

Yeah, it's been a really rough ride for me. I suspect that the multiple medications I was on have played a big role, along with hormonal changes that I'm clearly undergoing as a woman in her 50s. I've come across quite a few studies on a type of dizziness that mostly affects women, and I really think that's what's happening in my case. I've posted about this before and included links to studies.

 

Best of luck!  I hope you get some relief soon!

[[La...]]

Thanks very much, Gypsy. I'll have a look. I did a lot of vestibular rehabilitation therapy, but it didn't help me. I'll have a look at some point soon and see if this website is suggesting something different for the symptoms I have. I don't have vertigo, but I do have tinnitus. My dizziness would be better described as "disequilibrium", since there's no spinning and no motion-triggered symptoms. It's just there -- worse on some days, better on others -- with no known trigger.

 

Lapis, You have been off for over 6 years and still have this.?.?  That’s both scary and depressing! I’m sorry this is still happening to you!  I’m 16 months off and have all of what you described and more.  And they say we all heal.... pffft

 

Hi Hopper,

Yeah, it's been a really rough ride for me. I suspect that the multiple medications I was on have played a big role, along with hormonal changes that I'm clearly undergoing as a woman in her 50s. I've come across quite a few studies on a type of dizziness that mostly affects women, and I really think that's what's happening in my case. I've posted about this before and included links to studies.

 

Best of luck!  I hope you get some relief soon!

 

Thanks so much, Hopper! All the best to you too. Everyone goes through this differently, so we all have to hang onto hope.

[[ti...]]

Thanks very much, Gypsy. I'll have a look. I did a lot of vestibular rehabilitation therapy, but it didn't help me. I'll have a look at some point soon and see if this website is suggesting something different for the symptoms I have. I don't have vertigo, but I do have tinnitus. My dizziness would be better described as "disequilibrium", since there's no spinning and no motion-triggered symptoms. It's just there -- worse on some days, better on others -- with no known trigger.

 

Lapis, You have been off for over 6 years and still have this.?.?  That’s both scary and depressing! I’m sorry this is still happening to you!  I’m 16 months off and have all of what you described and more.  And they say we all heal.... pffft

 

Hi Hopper,

Yeah, it's been a really rough ride for me. I suspect that the multiple medications I was on have played a big role, along with hormonal changes that I'm clearly undergoing as a woman in her 50s. I've come across quite a few studies on a type of dizziness that mostly affects women,and I really think that's what's happening in my case. I've posted about this before and included links to studies.

 

Best of luck!  I hope you get some relief soon!

 

Thanks so much, Hopper! All the best to you too. Everyone goes through this differently, so we all have to hang onto hope.

 

Lapis, Can you please link the information to this? Thanks 🙏🙏

[[La...]]

Hi tidefan,

It's called Mal de Debarquement Syndrome, and it predominantly affects women. It would be very hard for me to find and link all of the studies I've shared here thus far, but the syndrome I'm referring to is called Mal de Debarquement Syndrome (MdDS). It can either be motion-triggered or triggered by some non-motion thing, and it seems to mostly affect women. Some of the papers I've read have considered the possible link between female hormones and this syndrome, but I've not yet come across anything that provides clear answers. The most recent paper I read showed that women who had MdDS saw reductions in their symptoms during pregnancy, i.e. a time when certain hormones increased. For someone like me, i.e. someone whose hormones are decreasing during perimenopause, the connection between hormones and symptoms makes sense.

 

Obviously, I've taken a bunch of meds that affect the vestibular system badly (benzos, SNRI, SSRI), so I think I probably have a combination of factors at play.

 

If I can re-find those links, I'll put them in, but I'm feeling pretty overwhelmed here now, and I may not be able to do it in the next little while.  You can use the Search box in the top right-hand corner to do your own search, and you may find my posts, as well as any posts that anyone else around here has posted on this topic.

[[La...]]

Here's one of the Mal de Debarquement studies I posted, but it's already about three years old now:

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5418223/pdf/fneur-08-00175.pdf 

 

Here's the introduction from this paper:

 

The  mal  de  debarquement  syndrome  (MdDS)  is  a  maladapted  vestibular  movement  disorder  characterized  by  continuous  rocking,  swaying,  or  bobbing  that  can  follow  a  cruise,  flight,  or  ground transport (the classic MdDS) and can also occur sponta-neously  (1–7).  The  continuous  oscillating  movements  are  often  accompanied  by  additional  symptoms,  such  as  bouncing  while  walking,  intolerance  to  lights  and  noises  and  crowds,  impaired  cognition,  lack  of  mental  clarity  (i.e.,  brain  fog),  blurry  vision,  anxiety, depression, and lethargy. These symptoms are generally relieved temporarily while riding in a car or a plane, but return promptly  when  the  ride  ends  and  can  persist  for  months  or  years. At present, MdDS is not widely recognized by the medical community, and, until recently, there was no effective treatment. While MdDS has been classified as a rare, disabling disease, with the  wide  interest  in  cruises,  there  is  a  steady  stream  of  patients  who contract this illness.

[[ti...]]

Thank you Lapis. How is your disequilibrium now compared to when it first started? Any improvement at all?

[[Ga...]]

I am still dizzy, today was really bad. The tinnitus is screaming tonight.

My balance is so gone. 8 yrs off after more than 20 yrs on benzos.

[[La...]]

Thank you Lapis. How is your disequilibrium now compared to when it first started? Any improvement at all?

 

Hi tidefan,

Well, I still have dizziness ranging from a 6 to a 9 out of 10 (with 10 being the worst), and that hasn't changed. Also, I still never get two good days in a row, e.g. two 6s or 7s in a row, or a 6 one day and a 7 the next. 8s and 9s are harder to cope with, and some days, I just spend much of the day crying. I write down my level of dizziness every day and chart it once a month to see if there are any patterns, but I can't say that there is.

 

I do think that perimenopause (which I'm right in the middle of) has made things worse for me, and of course, there's no way to know exactly when that started. With all the articles I've read that point to a connection between dizziness and hormonal changes in women, I know that it's a factor for me.

 

I'm not sure how useful it is to compare ourselves, so I suggest that people try not to do that. We're all unique genetically speaking, and we've all taken different things, so no two people will have the same experiences and patterns with this. For some people, dizziness is a passing thing during their benzo withdrawal, and for others, it can go on longer. I still do research on this topic, but I'm pretty behind these days. COVID-19 has added a layer of stress in my situation, and I need to deal with those other things right now.

 

Anyway, I hope your dizziness is short-lived, tidefan. I wish it for everyone. It's an intense symptom, and it can be really scary and debilitating. We just have to have hope that our bodies can heal and normalize.

[[ti...]]

Thank you Lapis2. I'm so sorry you've been suffering for so long with this horrible symptom. I have a question- When does the suffering get so bad that some type of medication needs to be implemented? I mean, life is too short. If I suffer with this for too long I would have to think about reinstating even.

[[Jo...]]

Hope. Sometimes it is that little whisper saying, "it will be better tomorrow " that is the only thing keeping us going. Keep hoping. The alternative path could be a mental cul-de-sac.

[[La...]]

Thank you Lapis2. I'm so sorry you've been suffering for so long with this horrible symptom. I have a question- When does the suffering get so bad that some type of medication needs to be implemented? I mean, life is too short. If I suffer with this for too long I would have to think about reinstating even.

 

Hi tidefan,

Thanks for your kinds words. What type of medication are you referring to? I'm not aware of any medication that will take away this kind of disequilibrium. In my understanding, medication is what caused this. Benzodiazepines are known as "vestibular suppressants" in the medical literature, and, as such, they interfere with "vestibular compensation", which is your brain's way of normalizing balance. In my case, I was on two different benzodiazepines for part of my life, and I also took an SNRI for awhile, and later on, an SSRI (which was prescribed to -- supposedly -- help with the withdrawal from the SNRI -- NOPE!). That's a ton of medication! All of those meds are problematic for balance, and, indeed, I became dizzy while I was still on the medication (around the time the doctor added the SNRI onto the benzos). So, at least for me, medication is not an answer at all.

 

As far as "reinstating" goes, there's absolutely no guarantee that that would help. It could also make things worse. The issue of "kindling" could come into play, as well. That means that it could be harder to get off the medication if you tried it another time. One would have to be willing to take those chances if s/he decided to go that route.

 

For me, I know I never could. I'm just hoping and praying that my brain will settle down, especially as I make my way through perimenopause and into full menopause. Right now, I suspect my hormones are all over the place. I have some proof based on a couple of blood tests too.

 

I've posted numerous articles on the topic of medications and balance. The number of "ototoxic" medications (i.e. toxic to the ears in terms of hearing and/or balance) is very long -- unbelievably long -- so it's important to keep that in mind when taking any medication at all. People need to do a bit of research and inform themselves of the risks before they start taking something. My huge, huge regret is that I didn't ask more questions before starting those meds. I wish I'd been informed.

 

I really had no idea. Massive regret.

 

:(

 

 

[[du...]]

Hi. I belong in this group regardless of benzo use, but tapering anything increases my dizziness.

 

I’m going to guess that over the past 698 pages no one has found a magic cure for non-vestibular dizziness?

[[La...]]

Hi. I belong in this group regardless of benzo use, but tapering anything increases my dizziness.

 

I’m going to guess that over the past 698 pages no one has found a magic cure for non-vestibular dizziness?

 

Hi duchess,

I'm not aware of any "magic cure" for any of the benzo withdrawal symptoms, including this one. I think there are things that people do to ease certain things or to cope better with certain things, but a "cure" is elusive, as far as I know.

 

Everyone is so different when it comes to this syndrome. Some people sail through it, while others have intense symptoms. For some, the process is short, while for others, the symptoms go on for a longer period of time.

 

It makes sense to get things checked out by a doctor, though, just to rule out other things that could be going on. Dizziness is a symptom of many different conditions, so that's where certain tests come into play. It's a personal decision, though, and not everyone decides to get tests done.

 

I'm a bit unsure, though, what you mean by "non-vestibular dizziness". My understanding is that there are three systems involved  in balance -- vision, proprioception and vestibular -- and they must all be giving the brain the same messages at the same time. If one of them is "off", then that can affect balance. In the case of benzodiazepines and antidepressants, it's the vestibular system that's usually affected. Psychiatric medications can affect certain neurotransmitters that are involved in the vestibular system, e.g. gamma aminobutyric acid, glutamate, serotonin, dopamine, etc. Some people have visual issues as well, so perhaps that's a factor in some cases, but again, this is where testing comes in.

 

 

[[...]]

I want to add my experience to this group.

 

13 years on Klonopin, 1 year taper, 20 months benzo free.

 

Lately, I have a new symptom.  Dizziness.  I have good days and bad days.  Once, it lasted for 4 days.  Usually, is it one or two days on and then stops for a while.  This only has been happening for a couple of weeks so no real pattern yet.

 

Anyone else have dizziness and did it ever stop?

 

[[Gy...]]

I want to add my experience to this group.

 

13 years on Klonopin, 1 year taper, 20 months benzo free.

 

Lately, I have a new symptom.  Dizziness.  I have good days and bad days.  Once, it lasted for 4 days.  Usually, is it one or two days on and then stops for a while.  This only has been happening for a couple of weeks so no real pattern yet.

 

Anyone else have dizziness and did it ever stop?

 

Hi Bob

 

I have had many dizziness issues that have been consistent for 4 years, and the only relief (and it is still early days) is with neuroplasticity.

I have made so much progress in a reasonable amount of time by following a program by a young lady who is an audiologist and experienced this and tinnitus herself. She came up with a program and also explanations as to why we experience this.

Seeking balance international is her website her name is Joey Reminyi. She has a free starter kit on her web page. Plus lots of YouTube videos.

 

I started with that, I have been doing it for around 6 months now and it is making a huge difference.

This has given me so much hope, but like anything you have to do the work but it’s not difficult or that time consuming.

 

Hope this helps

 

Gypsy