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

[[Th...]]

Hi Thomas,

Dizziness isn't necessarily about your body being in motion. It's just what your brain perceives.

 

Usually it's good to learn new things, but this isn't one of the nicer things to learn, right?!

 

Right! 😊😊😊

[[La...]]

Hi Dizzy Buds,

How is everyone doing these days? It's been quiet around here, so that could be good news.....or maybe it's quite the opposite. Anyway, I just wanted to share a study I came across called "Psychogenic Dizziness: An Important but Overlooked Differential Diagnosis in the Workup of the Dizzy Patient". I'm not sure how everyone feels about that title, but for me, it causes a certain amount of distress. I remember what the neurologist told me when I first went for testing and examination. He said, "The vestibular system is highly sensitive, and if it's off a little bit, you can feel dizzy. And we don't have the means to test it to the degree that we would like at the present time."

 

I appreciated that info. He acknowledged the lack of 100% proof testing for vestibular issues. Thank you, Doctor! He didn't give me the "psychogenic" label right away.

 

However, if someone has gone through all of the testing, and there hasn't been a clear diagnosis, many doctors will tell you "It's psychogenic," or "It's all in your head." Yes, it some cases, anxiety can cause dizziness. But in other cases, the dizziness persists, and it's not psychogenic. It's just that the current testing can't reflect all possibilities right now.

 

I'll post the abstract and the full study here, and I'd love to hear back from anyone who reads the full study. It's interesting. It's a case study, and the woman is on a number of medications, which could, of course, cause dizziness -- either alone or in combination. She's on a low dose of an SSRI, along with some other things. The study does talk about how difficult it is to diagnose dizziness, and how, in some cases, anxiety is the RESULT OF, rather than the cause of, the dizziness. I'm glad they acknowledge that.

 

In this particular case, the woman's dizziness improves when she's given intravenous diazepam. Okay, so it's quite possible that she's dizzy because she's anxious, and that the diazepam helps, but if she continues to take what we all know is a "vestibular suppressant" according to the medical literature, then she could be dizzy for a very long time. I didn't see that reflected in the study.

 

Here's the abstract, followed by the full study:

 

https://www.ncbi.nlm.nih.gov/pubmed/29710364 

 

 

http://jaoa.org/article.aspx?articleid=2680402

 

 

 

 

[[La...]]

Here's one more study. What's notable to me is the mention that the VEMP testing often involves false positives and negatives, which renders its use questionable, I think. I'm glad that they acknowledge the false outcomes, as it further strengthens my position above. That is, if the testing isn't reliable, then one must be extremely careful about pronouncing someone's dizziness "psychogenic". It may just be that the testing is inaccurate.

 

Did anyone have VEMP testing?

 

Here's the part I'm referring to:

 

"The variability in otolith function is partly due to the heterogeneous nature of BVP but is also due to false negative and positive responses that occur because of the large range of normal VEMP amplitudes. Due to their variability, VEMPs are not part of the diagnosis of BVP; however, they are helpful complementary tests that can provide information about the extent of disease within the labyrinth."

 

And here's the abstract:

 

https://www.ncbi.nlm.nih.gov/pubmed/29719527 

 

 

[[Jo...]]

Bad day, my dizzy buddies. Cut to .75 xanax and feeling woozy all day. Plus heart palpitations that are escalating my anxiety. First time in 14 years that my body is dealing with under 1 mg. Normal?

[[La...]]

Hi Joyatlast,

Congratulations on making that cut! I'm sure that was a big scary, but good for you to take that step. And yes, in my opinion, I would think that any and all of the symptoms -- including the ones you mentioned -- would be considered "normal". It doesn't feel good, but yes, it's within what would be considered part of possible outcome of withdrawing from a benzo like Xanax. Did you ever consider switching to a longer-acting benzo? I know it's a very personal thing, so I just wondered about your thoughts on it.

 

Take good care, and stay safe. Take it easy when you're walking around, and be patient with yourself, if you can.

[[bc...]]

I know this is a dumb question....but has anyone here got completely UNdizz or knows of someone that lucky?MINE just gets worse...never varies..about an 8 now. I did talk to Baylissa...mainly because she was so dizzy. But she said that she just woke up one day and it was gone...3 years. Can that be? I cant go thru all those success stories to find an undizzy success.... I will be worse off. I had a total window a year ago...nothing since.

[[La...]]

Hi bcdef,

Yes, for sure! Some people tell us about it, and others just disappear. So, we can only guess what happened there. It's hard to keep any sort of statistics or data on this, because the nature of BB is to come and go as one pleases.

 

I think Baylissa is a good barometer of what goes on, since she talks to so many people. And yes, she herself was dizzy for a long time and then she got well. I believe she took clonazepam for 8 years or so. It's fantastic to think that you could just wake up one day and find that your dizziness is gone, isn't it? I love that!

 

Are you taking any other meds that could possibly make you dizzy?  The list of meds that cause dizziness is rather long, so that's something to keep in mind. Have you had things checked out by any doctors or had the vestibular testing? As per my posts above, I'm aware that some of the testing has limitations, but it's good to have things checked and, hopefully, eliminate certain possible causes.

 

Did Baylissa put you at ease at all? I hope so. 

[[Jo...]]

Lapis thank you. I had no luck with valium, but some limited relief with the new addition of buspirone. My doctor is very understanding but I don't think he grasps just how long recovery can take. Have you had any luck with vestibular balance exercises? I just began them and I sure hope it helps. My doc also took me off a diuretic triamterene hctz  because he thinks that may be a dizziness  contributor.  Hope you have a spin free day, and thank you again.

[[bc...]]

Well...that gives me hope. I have had 3 rounds of vrt, 3 functional neurologists with 0 help,their home exercises...no help,5 regular neurologists, 1 cat scan, 3 MRIs , 2 ENTs..no more. I guess there is no help but luck and time.

 

Thanks...Lapis.oh

[[La...]]

Lapis thank you. I had no luck with valium, but some limited relief with the new addition of buspirone. My doctor is very understanding but I don't think he grasps just how long recovery can take. Have you had any luck with vestibular balance exercises? I just began them and I sure hope it helps. My doc also took me off a diuretic triamterene hctz  because he thinks that may be a dizziness  contributor.  Hope you have a spin free day, and thank you again.

 

Hi Joy,

I was asking about your taper because sometimes people find that the short half-life benzos, such as Xanax, can make it tougher to get off. There can be a rebound-type anxiety. I'm sorry that Valium/diazepam didn't work for you, though, because for some, it can reduce that. I was on clonazepam, and I couldn't taper directly from it. I had terrible panic attacks and muscle cramps. When I switched over to diazepam for the taper, things settled down a lot. I was still dizzy, of course, but I had a pretty regular pattern of 6s and 8s, so I could move around better on the days when I had a 6, and then go easier on days when I had an 8.

 

I just dropped the dose by 1 mg every two weeks, as per the Ashton Manual. I wasn't on BB at that time, so I just wanted to follow the suggested plan as best as I could. With BB, there are lots of ideas about how to taper, including microtapers and liquid tapers, etc. If you check out the tapering section, there might be ideas there, i.e. if you're interested.

 

As far as VRT, I tried two three-month rounds of vestibular rehabilitation exercises, but I didn't find that they helped me. I know that they can be quite helpful for some types of dizziness, but that's where a proper assessment comes in. I don't think I have the type of dizziness that responds to such movement, but I gave it a really good try. If someone has assessed you and prescribed certain exercises to address your personal situation, then it's seems worthwhile to give a good try.

 

I'm glad you've reduced your other medication, since that might lighten the load on your vestibular system. During the first hearing test I did, the technician pulled out a big book of "ototoxic" medications, i.e. toxic to the ears/balance/hearing. Holy Moly! I couldn't believe how many meds were listed there! It's good for doctors to be aware of such things because dizziness, hearing loss and tinnitus can obviously be quite serious.

 

 

[[La...]]

Well...that gives me hope. I have had 3 rounds of vrt, 3 functional neurologists with 0 help,their home exercises...no help,5 regular neurologists, 1 cat scan, 3 MRIs , 2 ENTs..no more. I guess there is no help but luck and time.

 

Thanks...Lapis.oh

 

Wow! You've really done the rounds! I hope you feel at least some sense of calm, in that there was nothing serious found. I know it still sucks to be dizzy (Believe me, I know!), but it seems you can be fairly sure that you've had things properly checked out.

 

Yes, we need patience, time and a certain amount of luck. I'm not feeling so lucky, and I'm working on the patience thing. Time,....well, I don't think we have much choice. 

 

[[La...]]

Hi Everyone,

I just wanted to give you this link to Baylissa's website -- in particular, a page where she has put up a few interesting and helpful video clips. While none of them specifically address the issue of dizziness, they do speak to our concerns about recovery, etc. Have a look here, and then look around the website for other useful things. I'm not a member, but these clips and a few other things that I came across have given me some renewed hope and solace while I struggle through another very dizzy bunch of days (or "daze", if you like!).

 

https://baylissa.com/clips/ 

[[Th...]]

Thanks Lapis!  Interesting.  My BPPV dizziness has faded but I still have same type of dizziness when I turn my head from the side to the other side in bed so I feel it. It happens only when I I lay down. When I stand, walk etc i sometimes notice light dizziness but I really can not say what it is or is it just something I think I might have because I monitor my healt nowadays all the time. Well, I think that monitoring my health is a problem too but is is very difficult to avoid it.

[[La...]]

Hi Thomas,

I'm so glad to hear that your dizziness has settled down! Great news! I think what you're referring to in your post -- the focus on health -- is quite common around BB. It's pretty tough to go through something like this and not get nervous about all the strange symptoms. I think there's a healthy balance somewhere between getting things checked out by appropriate medical professionals and not getting anxious about each and every thing that we feel. If there's something that's very concerning, then by all means, get it checked out. But if you're pretty sure it's part of withdrawal, then it's a matter of patience and tolerance. Having broken a bone in my foot last fall, I'm still dealing with lots of fears around that. Very hard.

 

In any case, I hope your symptoms stay on the mild side. Let's hope they're on the way out! 

[[Th...]]

Hi Lapis, yes I ment focus on health! Thank you about all your nice words! 😊😊😊

[[La...]]

Hi Dizzy Buddies,

How is everyone doing? I just wanted to drop in and say "Hello!" and wish everyone well. Also, I came across a Consumer Reports article today about medications that can cause dizziness and alternatives to those meds. Have a look:

 

https://www.consumerreports.org/cro/2015/05/drugs-that-can-make-you-dizzy/index.htm 

 

I'm having another dizzy day, so I'm just trying to get through it. I'll be "Rockin' the Night Away", which is way more fun in the song than in real life! 

[[Th...]]

Hi Lapis, thanks about asking! Well, it seems that I'm quite steady but annoying recovery phase of my journey having my 3-4 symptoms to deal with.

 

Dizziness is one of the symptoms I have but I do not know if it is tupical or not to have what I have. I feel dizzy nowadays only when I'm in bed or when I come out of bed. So I feel dizziness when I'm eyes closed in bed, turning my head and sometimes I feel shaky when I come out of the bed and walk my fisrst steps. As opposite when I walk more outside house, don't think about my symptoms but doing something else; then no dizziness at all but feels like normal. I do not know is this something typical or not.

 

Well, it is early morning here and I'll walk to outdoor market place in harbour in order to buy some veggies, fish and berries. I also plan having coffee and some light breakfast in there. I try to do normal things despite of the health mess...

 

Have a nice day all of you! T.

[[La...]]

Hi Thomas,

I'm not sure where you are, but I'm guessing it's somewhere in Europe. Your plans sound lovely to me! Yes, you should definitely do as much as you can, because I'm sure that will help you feel better and better. It's all good for the brain, not to mention the soul. 

 

As far as your dizziness goes and how typical it is, I think we're all quite different. I know you had some treatment for BPPV, and perhaps what you're describing is part of that condition. It's hard to say. My dizziness is an all-day affair -- including sitting, standing, walking and lying down -- so I'm very restricted by it on bad days. Some people have better times of the day and worse times of the day.

 

In any case, it sounds like your dizziness is annoying, but not invasive, and that's wonderful news! Enjoy! It must be afternoon wherever you are, so I hope the rest of your day goes well.

 

Take care!

[[La...]]

Hi Dizzy Buds,

In case you needed another reason to be very careful when it comes to antibiotics, here's a study on "vestibulotoxicity", which refers to types of medications that cause problems with the vestibular system. This particular study looks at aminoglycosides, i.e. antibiotics like Gentamicin, Tobramycin, Streptomycin and others. The study is called "Vestibulotoxicity: strategies for clinical diagnosis and rehabilitation".

 

https://www.ncbi.nlm.nih.gov/pubmed/29741128

 

I hope everyone is hanging in there. I'm trying to recuperate from yesterday's very dizzy day, continuing my usual pattern of one very dizzy day, followed by a less dizzy day, etc. I hardly slept last night due to the muscle pain caused by trying not to fall. I'm wiped today. Just trying to get through it....

 

Take care, All!

[[La...]]

And this Chinese study is looking at the various causes of dizziness. It's called "Etiological analysis on patients with vertigo or dizziness". If you're looking for where we fit in, there is, indeed, a category for "drug-induced vertigo", as well as one called "persistent postural-perceptual dizziness", which I'm sure some doctors would label what we have.

 

https://www.ncbi.nlm.nih.gov/pubmed/29747309

[[Me...]]

I am going through this so hard right now. I am at month 4.

It is nearly ruining my life.

I will be in the store and all of a sudden a wave will knock me out.

Luckily, I can navigate myself home. Barely, but luckily.

 

[[Me...]]

Has anyone found symptom relief in ANY way?

[[DB...]]

I'm at four months too and Costco makes it worse then any other place or time. Recently, I saw an ENT and he found my right eardrum is perforated with an infection. He wants me to start vestibular rehabilitation. Has anyone tried this? Did it help?

 

[[La...]]

Hi Meganz and DB1070,

Dizziness is a pretty common symptom of benzo withdrawal. I'm so sorry to hear you guys are struggling with it too, and I really hope it passes quickly. DB, I think I answered your other post about VRT. I did it early on -- twice, for three months at a time, 4-5 x per day, but it didn't work for my symptoms. However, if you have another dizziness condition, perhaps it will work. You should definitely seek out the appropriate testing and assessment to see if you're a good candidate, since everyone is different.

[[Th...]]

I got some instructions from my PT how to practice balance. Two different practices:

 

1) put one foot front of the other and close your eyes. Stay in this position 1 minute eyes closed. I noticed that only 20 sec is good but it improves. I use my iPhone to take time. Do this 4 times.

 

2) walk eyes closed py puting one foot fron of the other. Walk 5 meters eyes closed. Repeat this 4 times.

 

She said that balance can be improved by repeating this every day. I will give a try and do this every day. Let's see how it works.