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

[[Da...]]

Hi all.  Just here needing some more reassurance about my boatiness, haha.  Does anyone else get sort of involuntary leg movements or involuntary movements in their core that kind of jerks their body?  Also, does anyone else get a strange sense like their center of gravity is high in their shoulders, neck, or head?  Sort of top-heavy I guess?

[[La...]]

Hi Danimal,

I'm just wondering if you've checked your other medications for side effects. If you're still taking the ones listed, then they may be part of your problem. It might be worth asking the doctor and/or pharmacist about that. Is the combination of meds okay? All meds can have side effects.

 

 

[[Da...]]

Thanks Lapis.  I've been thinking about that.  These things seemed to come with tolerance withdrawal from klonopin and then were worse with total withdrawal, but it still could be other meds that were masked by klonopin.  Or it could just be from anxiety.

[[La...]]

SSRIs,SNRIs, and muscle relaxants all list dizziness as a possible side effect. Bad combinations of meds can affect people too. There are lots of factors. For sure, benzos and benzo withdrawal can be culprits, but so can the others.

[[La...]]

Here's a recent U.S. study on "Neuropharmacological Targets for Drug Action in Vestibular Sensory Pathways". It mentions two of the major neurotransmitters that play roles in the vestibular system -- glutamate and acteylcholine. If you want to read the whole study, just click on the link in the upper right-hand corner of the abstract.

 

https://www.ncbi.nlm.nih.gov/pubmed/28942632 

 

How is everyone doing these days? Hanging in there? Staying upright? Staying upbeat?! I hope so! 

[[La...]]

Here's another abstract that might be of interest. It's a German study called "Self-Motion Perception: Ups and Downs of Multisensory Integration and Conflict Detection".

 

Abstract

 

A new study indicates that, in humans, eye movements play an important role in self-motion perception, in particular in integrating information from the visual and vestibular systems and detecting possible conflicts between them.

 

https://www.ncbi.nlm.nih.gov/pubmed/28950080 

[[Da...]]

Interesting that you posted something about eye movements.  I saw a neurologist on Monday (to be safe and get peace of mind), and he was commenting to a doctor in training that I had retractive nystagmus.  He had me do a bunch of different things, so I don't know if it appeared when he had me hyperventilate or if it was something else.  It has something to do with a strange eye movement.  A doctor commented before about this with me.  I'm pretty sure this isn't something I had before benzos.  Both times a doctor has noticed it, I have been in withdrawal (or tolerance withdrawal).  Since w/d can mimic all kinds of things (and if the MRI doesn't show a lesion that can cause this), I'm chalking it up to a w/d symptom.

 

EDIT:  I just wanted to mention that he told me everything I'm experiencing could be explained by withdrawal and that my brain (and nervous system) was over-reactive, and he congratulated me on getting off of it.  So that was nice.  But fortunately I'm getting imaging and a bunch of other tests done to rule out anything else.

[[La...]]

Ah, smart move, Danimal! Good to get things checked out. Nystagmus is common with certain vestibular ailments. I haven't had it myself with this disequilibrium, and I'm not sure about others around here, but again, I'm glad you're getting things tested. Hopefully, you can rule certain things out. Perhaps the doc will have some suggestions too. Please keep in touch and let us know how it all goes.

 

 

[[Da...]]

Will do, Lapis!  One thing he suggested was Tai Chi, so I'm looking into that.

[[Da...]]

Here's something real quick: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2286487/?page=1

 

Anxiety state can cause lateral nystagmus.

 

They used to use the term "disintegration" for dp/dr (I think more so dp).

[[La...]]

1944! Wow!

[[Da...]]

Haha, yeah.  Definitely older, but I guess they were able to do a lot of research on trauma due to WWII.

[[...]]

When i read your signature lapis, i'm so glad to have stopped all those pills after 4 months... Where the Hell I could have been if I continued to take them ! I feel already like hell at 4 months out.

[[ma...]]

Folowing, I'm a floater 

[[La...]]

Hi magnesi,

Welcome! Sorry to hear about the floating, but you're in good company here.

 

Yong,

Please remember that we're all different. I, too, am glad you didn't take the medication for long, but there are too many factors involved -- including genetic ones -- to figure out why people get certain symptoms and others don't, or why the symptoms stick around longer for some than for others. If you hang out on BB, you see how true that is. Genetically speaking, I can see how I take after one side of the family more than the other when it comes to meds.

 

Anyway, the bottom line is that getting off and staying off these meds is the best thing any of us can do. If we'd all known then what we know now, we likely wouldn't have started taking them at all. I know that's true for me.

[[...]]

I agree totally. And when I tell about withdrawal to all the doctors their only solution is to put me back on them :/ its really a weird adventure. Fortunally i'm not alone but I Just can imagine that people can lose their entiere life because of this. 

[[ma...]]

there are too many factors involved -- including genetic ones -- to figure out why people get certain symptoms and others don't

 

Absolutely! I'm prone to be carsick and boat-sick since I was a child. I once spent five days in a boat (seasick most of the time, of course) and afterwards felt dizzy for more than two weeks

[[La...]]

Yong, I think about what it was like for people who didn't have online support and information. They had no idea what was going on, and they had no help to get through it. There are some old videos from the UK, and they're quite chilling to watch.

 

There's no good reason why doctors shouldn't know about this. It's in the medical literature going back years and years. Withdrawal is part of the action of many drugs -- not just benzos. Doctors should be well-versed in how to help people get off all types of drugs safely and slowly. Also, the medical literature states that benzos are meant to be taken for no longer than 2-4 weeks.

 

By the way, my dizziness started while I was still on medication. I had to go through lots of testing to eliminate other possible causes before it became quite clear that the meds -- which are KNOWN to cause dizziness -- were making me dizzy. Had I started a taper right when the dizziness started, maybe it would have subsided earlier. Who knows? I can't know, and it's not worth dwelling on it.

 

The actions of the drugs interfere with the function of the vestibular system. Benzodiazepines are "vestibular suppressants". Check out the first few pages of this thread if you want to read more on that topic. Antihistamines and anticholinergics are also "vestibular suppressants", and they're not meant for long-term use.

[[Da...]]

Hi guys.  Just popping in again with yet another question.  My boat feeling has kind of changed to a sensation of pushing and pulling, but a sensation of pushing one part of my body and pulling another (that's the best way I can explain it).  I know this is listed on the first page of this thread as a description, but I wanted to know if this is what people mean when they talk about symptoms "morphing."  A lot of my physical (esp. muscular) symptoms have definitely presented themselves differently over time, so I'm just curious if this is what people are talking about.  The boatiness is sort of still there, so maybe these are just stronger body jerks than I've had before.  Anyway, thanks in advance.  This place, the people, and the info has been infinitely helpful to me during this strangeness.

[[La...]]

Hi Danimal,

What you're describing is definitely part of my experience. I think it's hard for us to find the exact words to describe what we're feeling, so that's part of the challenge. Suffice to say, disequilibrium -- what you're describing -- encompasses a mix of sensations, and that's why I collated that page one list of descriptive words that BBs have used. Mine isn't the same every day. It can be milder or stronger, but push-pull, boatiness, feeling like I'm stuck in a strong current, swaying, etc., are pretty much always part of the mix.

 

When is your testing going to take place, Danimal? It will be good to get that done. Many people have had the testing, and it has come back "normal". And, of course, that's a good thing, in that it means that certain serious things can be eliminated from the list of possibilities.

 

I hope you've got a knowledgeable, helpful doctor on board. I'll be interested to hear what s/he has to say. Hang in there, Danimal, and know that you're not alone. Take care!

[[Da...]]

Hi Lapis.  Thanks as always for your encouragement and support.  The testing isn't until early November, but I will definitely let you know how it goes.  My Neurologist is pretty great.  He has me doing 3 different vestibular type tests as well as an MRI of the brain and inner ear. 

[[La...]]

Sounds good, Danimal.

 

Can I ask about those other meds you're on, as per your signature below? Are you still taking them? Did the doctors mention anything about those ones? They may be contributing to your balance woes too. So many meds can do that.

[[Da...]]

Hi Lapis.  I've asked my doctors about it, and they aren't sure if those could be the culprit.  Since I am in benzo w/d, they are hesitant to take me off anything else.  I was already having the symptoms when I was put on Buspar, and that doesn't seem to be affecting it.  I was on cymbalta while still on klonopin, but the dizziness wasn't like it is now.  The klonopin could possibly have masked it, but I don't know.  I told my doctor that I was thinking of going off of it or at least lowering my dose to see if it helps, but he wanted to wait until our next appointment (which is in a month) to see if there is any improvement without changing it.  He also didn't want to put me on buspar AND lower cymbalta at the same time because we wouldn't know which action prompted any changes.  As for the tizanidine, I've been on that for about 2 years now.  Again, dizziness was possibly masked by the klonopin, but not sure.  I only take it at night before bed, and it helps with sleep. 

 

I have my suspicions about the cymbalta.  I was raised from 30 to 60mg within a few weeks of going off of klonopin.  So if it isn't a result of w/d, my money is on cymbalta being the culprit.  I had REALLY bad neck and shoulder pain during the first month off of klonopin, so I'm worried I've done some kind of damage to my neck that is causing the disequilibrium.  I can't really feel them anymore.  The myriad of physical symptoms I have combined with the anxiety, dp/dr, and cognitive difficulties makes it all very hard to sort out.

 

On a good note, I actually had a few seconds today where the floor actually felt like it was below me and somewhat solid, haha.  It came with some strange sensations in my feet and ankles, but EVERYTHING is pretty strange right now.  However, it was something new, so possibly means improvement?  I certainly notice a general progression towards SOMETHING, but it is very slow and it's hard to tell whether that something is improvement or not.

 

Anyway, thanks for your continuing help and guidance, Lapis.  I really appreciate it.

[[La...]]

Hi Danimal,

Thanks for fleshing out the picture a little bit! I, too, was on Cymbalta many years ago, and, at the time, I was already on clonazepam. I only took it for a short time because it gave me terrible diarrhea, and -- yes -- I became dizzy during that time. So, like you, things became a bit of a mish-mash. I'd gotten new contact lenses too, and we wondered whether they were the problem. I followed that line of thinking for awhile, and, in the end, everything vision-wise was fine.

 

SNRIs, SSRIs and benzos can certainly interact, so there's that as a possibility. I agree that changing too many things at once can muddy the waters. But from what I can tell, all of the meds you've listed can affect the neurotransmitters that are involved in the vestibular system, and all of them have dizziness as a potential side effect.

 

In my case, I took two different benzos, as well as Cymbalta, followed a number of months later by Prozac. It was definitely too much for me. All of those meds can cause dizziness, both while someone is on them and in withdrawal. It's a lot for the vestibular system to handle. A neurologist told me that the vestibular system is "finely tuned" and "highly sensitive", and "if it's off a little bit, a person can feel dizzy". I really appreciated hearing that from him. To me, it meant, be careful with the meds! He also told me that the testing can only tell us so much, i.e. that it can't give us certain kinds of details that we'd like to have.

 

I found a book only after I did my Prozac taper, called "The Antidepressant Solution", by Dr. Joseph Glenmullen. He mentions dizziness in there, and the symptoms are very similar to those of benzo withdrawal dizziness. It might be worth checking out, if you're interested.

 

As for your neck, have you seen a physiotherapist ("physical therapist", if you're American)? Maybe they can check things out and see if you need a bit of help with that, e.g. stretches, exercises or manual therapy. Some stuff is not benzo-related and can be helped with some physio.

 

In the meantime, I'm really glad to hear you've had some better moments. Those are the times when you can remind yourself that you're NOT broken, and that this will get better! I'm having a less dizzy day today, so I know it's possible. I'm still taking the NSAIDs for my fractured foot, so I know they're affecting me (much louder hissing in my ear, increased dizziness, etc.), but at least, I've had a few less dizzy days in the mix. NOT a fun time for me!

 

Take good care, Danimal!

 

 

 

 

[[Da...]]

Thanks for all the info, Lapis!  My goal is to hopefully be off of all these meds someday.  I do see a physical therapist for my TMJ, and I've mentioned the boat feeling and my concerns about my neck.  Unfortunately, I have to get a prescription for physical therapy specifically for my neck, and the PT I see can't do anything about it.  However, she has given me stretches and exercises to do to help my neck and shoulders.  I haven't noticed really noticed improvement in my boatiness from them, but I'm doing them anyway. 

 

I'm seeing another doc that originally prescribed the TMJ therapy in 2 weeks and I'm going to bring up the concern to him (again).

 

I hope your foot heals swiftly!  I'm also happy to hear that you've had some less dizzy days.  I really feel for you having to deal with this for so long.