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

[[Mi...]]

Thank you LadyDen & Lapis for your replies.

 

I too think that keeping in motion such as doing chores and even gardening all the way to exercise is important. For me if I lay in bed too much it actually can worsen it. I'm too thinking it's about "retraining the brain" to balance appropriately.

 

I listen to my body and start with small chores, and housework. I have walked daily outside during all of this. In the very acute phase of course I did not walk very long. Just to the neighbors house. There are days I still need to rest some. I get up, make my bed, do my chores, shower if I can (showering is a challenging one for me, but even that's improved. Some days are better than others.) Then if I need a rest, I sit or lay down on my bed for an hour or so.

 

About 8 months ago I tried some vestibular rehab. I found videos on YouTube (just do a vestibular rehab search. They're easy to find) and I'm not sure if these exercises helped or not. I really can't tell. Maybe. I think time, healing and moving at my own pace was the best for me. Do a little "extra" though. Like when walking look up at tree tops, and birds, turn your head side to side, bend and pick things up. It's rough at first. Move your eyes side to side and look around. This is hard at first. Take your time with it.

 

Rest is important too. When in withdrawal you should sleep when your body asks you to. You need to rest to heal. But, laying in bed for hours and hours I think is bad. There are many people who end up bedridden for some time in WD, but it's still important to sit up in bed and try to spend time sitting up in a chair and walking in the house. Bedrest in general for long periods is unhealthy for many reasons. And yes having a Physical Therapist is ideal.

[[La...]]

I agree Miss. Being bedridden is not good or fun. I force myself to get up and walk around a bit. I try to do small things when standing. I'm so DANG tired of laying in this bed! I'm in prison in my own room. I do sit up to eat, stand to brush teeth, sit to bathe ( can't stand in shower yet) etc but as soon as I'm finished I have to hurry back to bed or faint. Then I'm very boaty for hours afterward. My brain views little things as big ones. I'm heading into my 5th month post jump. Hopefully this will lift soon so I can atleast start tolerating walking short distances. Each day, I try. Each day I try to sit up to watch tv, try to stay out in the sun longer, etc. and every time I try to force it.....big wave hit me and takes days to settle back down.  :'( but I refuse to give up! That's why I'm asking the question....if waves mean healing then shouldn't we push our limit a bit to cause waves?

Remember while tapering, we reduced enough to feel it but not too much to be miserable?

[[La...]]

Hi LadyDen,

I'm not sure about the waves-mean-healing idea. I'm dizzy every day, but not at the same level, and I just need to keep as functional as I can everyday. In my case, my dizziness may be a combination of the effects of the various meds I took, plus the hormonal changes I'm currently dealing with in perimenopause. So, I don't look at the wave/window model to explain my situation. I hope and expect that there's healing going on at all times, not just during waves.

 

In any case, we all have to figure out what works for us, and it sounds like you're doing that very well. It sounds like you're trying to do things. The fact that you feel faint sometimes might be a result of lying down a lot, though. Have you checked in with the doctor? Obviously, fainting isn't something to ignore -- especially if it happens a lot. I've got low blood pressure, so I'm aware of certain related issues.

[[Aj...]]

Anyone tried Frequency Specific Microcurrent for dizziness and/or tinnitus?

[[La...]]

Yes doctor has checked me for blood pressure problem and I have a monitor at home. All is well with it. This faint feeling is once I'm upright the head pressure accumulate within minutes of standing. I don't faint but feel like I'm going to. So I hurry back to bed. This is definitely intolerance of standing. This also happens when I sit upright especially a soft couch or soft chair. A hard chair, I do pretty well for a good 20 minutes but boaty the entire time. My boatiness shifts about once a week to push pulling sensation if I stand up during this, it feels like I'm going to have a seizure or a concussion. Very very very weird! All I can do once it gets too intense is lay back down. I've tried EVERYTHING from propping up with pillows, sitting half way up, testing different seats and combinations. I get the same result....can't tolerate being upright more than a few minutes. I wait the next day then I try again.

Sorry that you're having peri menopause. That's not fun. My dizziness/boatiness is also different levels each day and at different times of the day. I agree that we're constantly healing little by little. I've heard many times on here that waves mean healing. Parker gave a wonderful explaination of it being like construction in a building with people in it still working. Also referred to withdrawal as recovery. I know these waves must equal healing because they become less intense over time.

Ajusta I've never heard of that. No I haven't tried it

[[La...]]

Hi LadyDen,

Omigosh, that sounds really awful! I'm so sorry to hear about that. I'm glad you've had it checked by the doctor, though, because I do believe it's important to rule things out and ensure we're not missing anything else that might be going on. Did the doctor suggest anything at all or consider any sort of testing?

 

Hi Ajusta,

I haven't heard of that either. Is it something you've tried?

[[La...]]

Hi Everyone,

From time to time, I've posted about Mal de Debarquement Syndrome, whose symptoms describe what many of us are experiencing. I've just come across another medical journal article on MdDS, and I'll post the abstract here. It's about diagnosis and description, and if you're interested in reading the whole paper, it's available for this one. I'm still reading it, so I won't comment much until I do. In the meantime, here's the abstract:

 

Mal de débarquement syndrome: Diagnostic criteria consensus document of the classification committee of the bárány society

 

https://pubmed.ncbi.nlm.nih.gov/32986636/

 

 

Abstract

 

We present diagnostic criteria for mal de débarquement syndrome (MdDS) for inclusion into the International Classification of Vestibular Disorders. The criteria include the following: 1] Non-spinning vertigo characterized by an oscillatory sensation ('rocking,' 'bobbing,' or 'swaying,') present continuously or for most of the day; 2] Onset occurs within 48 hours after the end of exposure to passive motion, 3] Symptoms temporarily reduce with exposure to passive motion (e.g. driving), and 4] Symptoms persist for >48 hours. MdDS may be designated as "in evolution," if symptoms are ongoing but the observation period has been less than 1 month; "transient," if symptoms resolve at or before 1 month and the observation period extends at least to the resolution point; or "persistent" if symptoms last for more than 1 month. Individuals with MdDS may develop co-existing symptoms of spatial disorientation, visual motion intolerance, fatigue, and exacerbation of headaches or anxiety. Features that distinguish MdDS from vestibular migraine, motion sickness, and persistent postural perceptual dizziness (PPPD) are reviewed. Motion-moderated oscillatory vertigo can also occur without a motion trigger, typically following another vestibular disorder, a medical illness, heightened psychological stress, or metabolic disturbance. Terminology for this non-motion triggered presentation has been varied as it has features of both MdDS and PPPD. Further research is needed into its phenomenological and biological relationship to MdDS, PPPD, and other vestibular disorders.

 

 

 

Full Paper:

 

https://content.iospress.com/articles/journal-of-vestibular-research/ves200714#ref013%20ref022

[[Aj...]]

FSM can help lots of different things from autism to fibromyalgia, concussion, musculoskeletal injuries, brain injuries and vertigo.

[[La...]]

Thx Lapis for the link. To answer your question...yes I've been seen by my GP & neurologist ( specially neurologist- big wig- top dog etc) in their eyes I'm a medical mystery. All my tests physical exams and scans are normal. This neurologist's wife is a psychiatrist and have seen this in almost ALL of her patients that came off Z drugs or benzos. She's the one who told my neurologist why all my tests came back normal. There's some people that it hits their vestibular system the hardest. And unfortunately that's in my case. She said there's nothing that can be done except let time see how it will heal.

[[La...]]

Thx Lapis for the link. To answer your question...yes I've been seen by my GP & neurologist ( specially neurologist- big wig- top dog etc) in their eyes I'm a medical mystery. All my tests physical exams and scans are normal. This neurologist's wife is a psychiatrist and have seen this in almost ALL of her patients that came off Z drugs or benzos. She's the one who told my neurologist why all my tests came back normal. There's some people that it hits their vestibular system the hardest. And unfortunately that's in my case. She said there's nothing that can be done except let time see how it will heal.

 

Very interesting, LadyDen! That's amazing to have that kind of info from the psychiatrist.

 

And I've just finished reading the full document on Mal de Debarquement Syndrome, and it's really informative. They try to distinguish it from the other types of dizziness, and clearly, a lot of questions remain. There's a table in there where they compare three different types of dizziness. It's worth checking out. One huge, glaring, scary thing in that table is that all three types of dizziness that they compare are sometimes treated using benzodiazepines and/or SSRIs. Noooooo! I just find that wacko! Both of those types of meds can CAUSE dizziness! I never want to touch either of those meds again, and if a doctor suggested it, I would really question the basis of such a suggestion. Perhaps they prescribe those meds if they think someone's dizziness is purely psychologically based. I just think they don't have methods to test certain aspects of the vestibular system at this point in time, and instead of understanding the physiological causes, they blame it on psychological causes.

 

 

[[La...]]

That's exactly right. Most of them are too proud to admit they can't fix the issue so they use what they have that makes it appear to be fixed....benzos! It only makes it worse and as you said causes more dizzying. Sad!

[[La...]]

And now might be a good time to re-post this medical journal article on medications that cause hearing and/or balance issues (e.g. tinnitus, dizziness, etc.). Check out the comprehensive list of medications starting on page 610 (Index A)...and yes, of course, benzos and SSRIs are listed as possibly causing balance issues.

 

Pharmacological drugs inducing ototoxicity,vestibular symptoms and tinnitus: a reasoned and updated guide

 

https://www.europeanreview.org/wp/wp-content/uploads/956.pdf 

[[Mi...]]

Here I am up at midnight because for me sleeping and laying in bed is the hardest right now.

 

A symptom that I thought was gone. The symptom that is quite debilitating for me has returned. That symptom is vertigo and dizziness. I've had the mental symptoms too in withdrawal, and many others, but those have been gone for a year. Thank God I don't have them now. So that should give hope to people who ARE struggling with the mental symptoms that they DO go away. I don't have akathasia anymore either. It's been a year that, that has been gone too. But this vertigo, woozy, "floor feels boaty", nausea has returned. I'm so disappointed.

 

And, I have to say that it is most likely the flu shot that set this off for me. Don't let that scare you. There are plenty of people here on BB who got the flu vaccine with no issues. But for me, I'm still too vulnerable. I got the flu shot 12 days ago and since then I've went from feeling scary sick, to okay, to normal, to sick again. The dizziness/woozy has been coming and going for almost 2 weeks now. Therefore, I keep thinking it's behind me one day so I feel good and go about my day. Then the next day or even hours later I'm back to being on the "severe dizziness train" again. In essence, a roller coaster.

 

I'm trying to pull out all of my "tricks" and "tools" that I've learned during withdrawal: meditation, being gentle with myself, crying etc. My husband is working from home now to be with me. I'm very lucky there.

 

I wake up in the middle of the night feeling the worst like I'm on a boat and going to throw up, unable to move much. Then I slowly can move. It's better I just slowly sit up and move around. That alleviates it a lot but, then there's that whole part where I have to lay down and sleep again, and I'm apprehensive to do that afraid to wake up feeling the same way. So, I come on here to BB look for support, and to distract until I feel better.

 

I don't want to discourage people I've talked to on here who have dizziness/vertigo. People who I've told that, that awful symptom was behind me for good. It was "behind me," for about 8 months.  The thing is it's not as bad as it was in those early months, nor do I feel like this all day long like I did before. Knock on wood. The symptoms are not as severe.

 

I know that this is how the benzo withdrawal game works. Things come and go, and come and go again, but to a lesser degree than before, and for a lesser duration. It's that non linear path, but still heading towards healing.

 

I've thought about doing a check for BPPV (Dix Halpike & BBQ roll test looking for nystagmus) and then doing the Epley if need be (these are manuevers that people who have a history of this will understand) but I really don't want to "go there." I just want it to go away.

 

Maybe I'm doing too much. Maybe I've been doing too much on the days I feel better, and I should be lounging and watching movies during this wave and rest my body.

 

Any input from anyone is welcomed.

[[La...]]

Hi Miss! Wow I must say I'm sorry you're back on floaty boaty. I think with a bit more time you will settle back down nicely. Your brain will recall what's normal because it's done it before. I think for now you should just rest and let it take its course. Distract yourself. Try not to let it get the best of you. Your hubby is home now so take advantage of that with him. Play some cards, have a nice meal, watch movies, etc I really think you will settle soon especially since it's not as bad as before. That's a great sign. Your brain apparently got upset from the flu shot and is telling you that it didn't like it. So it's temporary. You will be ok again before you know it. Hang in there! 

[[Mi...]]

Hi Miss! Wow I must say I'm sorry you're back on floaty boaty. I think with a bit more time you will settle back down nicely. Your brain will recall what's normal because it's done it before. I think for now you should just rest and let it take its course. Distract yourself. Try not to let it get the best of you. Your hubby is home now so take advantage of that with him. Play some cards, have a nice meal, watch movies, etc I really think you will settle soon especially since it's not as bad as before. That's a great sign. Your brain apparently got upset from the flu shot and is telling you that it didn't like it. So it's temporary. You will be ok again before you know it. Hang in there! 

 

LadyDen,

 

Thank you so much for taking the time for your thoughtful reply & encouraging words. You are right. I need to busy myself with things I enjoy. Things that don't frustrate me. Also, rest and take it easy. I have the means to do all of this, and I need to take advantage of it.

This is my plan of action, and to laugh more.

 

Glad to know we're in this together and not alone.

 

Thank you

Miss Fortitude

[[La...]]

Yes I agree! We're not alone. We will heal. You're welcome Miss. Thx for being a good buddie

[[ju...]]

Hi friends. Some of you may know me from some posts. I am a remeron slow taperer. I have been using Vit C in high doses of 3 grs daily. I took it to degrade anxiety. Intermittent using thankfully. I quit it 3 weeks ago. Started to take strange sxs. Then i learned that could be Die Off sxs of Detox.Now, i am also getting light dizziness,hardship in standing etc.How do you cope with that? I hope it will pass soon. Tx

[[La...]]

Hi Juneight I'm sorry you're experiencing this terrible symptoms. The only way I'm dealing with it is, keep trying to increase my endurance, bed exercises, drinking plenty of water especially before you stand up and prayers that it leaves me soon. I hope you don't have to deal with it for long. It's very debilitating. I'm not sure if it's a result of high vit c or something else. But just be careful walking around and get up slowly. I'm having boatiness, intolerance of sitting up and intolerance of standing past a few minutes. Not fun! Best wishes to you!

[[La...]]

Hi juneight,

I agree with LadyDen that it's best to try to stay active but to also be careful. The idea is not to let your body get too weak while still accommodating your dizziness and strange symptoms. What you're describing sounds quite common to those of us on BB. As long as you've seen your doctor and you're quite sure that there's nothing else going on that needs to be addressed, then the most important thing is patience.

 

Take good care!

[[ju...]]

Thanks for your support.I think this will too pass in short time.I couldnt know walking would be a challange in thia journey.Tx again

[Guest [...]]

I think it's time I joined this group!!

I've been experiencing these feelings for several weeks now and by far they are the most uncomfortable!

 

I've tried several remedies, including antihistamines to see if it's sinus pressure that's contributing to this.

 

My head feels full all day, it feels heavy and my brain feels swollen?

Hard to describe.

 

I get very dizzy and have to sit down a lot!

 

Is there anything that we can do to help these symptoms!

 

I'm only at the beginning of my taper!

I need to be functional in order to work etc.

 

Anyone found any relief by moving to a different benzo?

 

I fear that I have brain damage already?

Has anyone had an MRI?

 

I also had the head burning stage a month ago, but I reinstated 0.25 mg during the day, which seems to have made that pain go away.

 

Does anyone else get headaches when they eat?

What's that about?

 

thanks,

WinnieDog

[[La...]]

Hi Winnie. Yes this is a rough tough debilitating symptom! I'm sorry to say there's really not much that you can do to alleviate it. Just be careful not to fall down. Nobody can tell you how long it will last. Its individual timeframe for each. I've had mine since the end of my taper. I'm nearly 5 months post jump and just now seeing a little improvement. I'm told that some are short lived and some are long lasting ( months to years). Some even had it awhile then woke one morning and it was gone! POOF....just like that. MRI normally show normal results.

[[ka...]]

Am I in 'tolerance' withdrawal?  After holding 5 weeks, symptoms, dizziness and headaches, head pressure didn't improve so I started 10% daily taper. First few days I felt the symptoms got better. Then dizziness got worse, but the other symptoms seemed to get better and stayed there now manageable.  I am very undecided if should continue the daily taper at a 5%? Keep tapering at 10%. I worry the dizziness will get worse.  Can't take more dizziness.  Any suggestion what I should do? I worry that my age (70) and taking for 39 years has something to do with this.

 

This dizziness according to Ashton Manual is due to gaba receptor dysfunction. On BB many claim that the dizziness is due to vestibular dysfunction.  I would like to know which is true.

I appreciate any comment

[[La...]]

Hi Katsu,

Here's what I can share with regards to what might be going on:

 

First of all, benzodiazepines are known in the medical literature as "vestibular suppressants" along with antihistamines and anticholinergics, and they are not meant for long term use. Benzos are also central nervous system depressants, and they make the brain sleepy, much like alcohol.They're really only meant for two to four weeks use, and even in that short time, they can cause dizziness, falls, fractures and motor vehicle accidents. That's well documented in study after study.

 

Also, there are numerous neurotransmitters that are involved in balance, one of which GABA. Glutamate, serotonin, dopamine, acetylcholine and a few others are on the list. I've posted about this before and shared links to medical journal documents on this topic. So, when we alter the way those neurotransmitters and their receptors work -- which is something that all psychiatric medications do -- then it makes sense that numerous related functions of the body can be altered. Neurotransmitters are the chemical messengers in the brain.

 

The neurologist that I consulted years ago told me a few important details about the vestibular system. He said it's finely tuned, and highly sensitive and if it's off a little bit, one can feel dizzy. He also said that they couldn't test it to the degree that they wanted to at that time. I'm not sure if the testing has improved since that time a number of years ago, but suffice it to say that many people get tested and have "normal" results, yet they're feeling dizzy.

 

I can't really advise you on the taper. I did mine years ago -- before I was on BB -- and I just used the Ashton Manual as a guide. I'm not sure if one method is better than another. In my case, I just wanted to get off the medications safely so that I could hopefully allow my brain to normalize. But there are many ideas out there about how to go about it. Perhaps you can pose the question on one of the other threads that focuses on tapering.

 

I wish you all the best with it!

 

 

[[La...]]

Here are some links to documents about the neurotransmitters in the vestibular system:

 

https://www.dizziness-and-balance.com/anatomy/physiology/neurotransmitters.htm 

 

https://pubmed.ncbi.nlm.nih.gov/27638061/ 

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2866460/pdf/CN-8-26.pdf