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


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Here are a few more pieces of info that may be useful to you:

 

1. According to this research from Johns Hopkins University, an MRI machine can make some people feel dizzy. Here's why:

 

http://www.hopkinsmedicine.org/news/media/releases/johns_hopkins_researchers_pinpoint_the_cause_of_mri_vertigo

 

2.  Info about GABA A Positive Allosteric Modulators:

 

http://en.wikipedia.org/wiki/GABAA_receptor_positive_allosteric_modulator

 

3.  Further info about GABA A Positive Allosteric Modulators can be found here:

 

http://en.wikipedia.org/wiki/GABAA_receptor

 

And from that website, here's a list of PAMs:

 

"Positive allosteric modulators: barbiturates, benzodiazepines, carisoprodol, thienodiazepines, ethanol (alcohol), etomidate, glutethimide, kavalactones,[23] meprobamate, methaqualone, neuroactive steroids,[24] niacin/niacinamide,[25] nonbenzodiazepines, propofol, stiripentol,[26] theanine, valerenic acid, volatile/inhaled anesthetics, and lanthanum.[27]"

 

4.  Here's a related and detailed article that explains how some "natural products of plant origin" can "influence the function of ionotropic receptors for GABA":

 

http://sydney.edu.au/medicine/pharmacology/adrien-albert/images/pdfs/RefsPDFs/376.pdf

 

 

All of these articles have been posted elsewhere on BB, but I thought it might be useful to have them on this thread as references.

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chamomile is a GABA A Positive Allosteric Modulator? that's too bad. i just had some last night and i felt fine from it.
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I know! Chamomile! But makes sense that any herb that can make you feel calm and drowsy may also work on the GABA receptors. What's unclear is how strong the effects may be and how much these things are factors in our continued healing. My personal plan is to avoid these things as much as possible. I just found out that my multivitamin had a few herbs in it, plus niacin and niacinamide. For now, I'm erring on the side of caution so I stopped taking it. If I get off my "floaty boat", I'll reassess the situation.

 

What's your take on it, prettydaisys?

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well i think for the most part we should definitely stay away from all the GABA A Positive Allosteric Modulators as much as we can. it's hard to do though and even for me and i'm kindling and sometimes i still want to try out different things.

 

i also think to just keep track of how you feel each time you ingest something no matter what it is and to also not become to obsessed about everything as that sets up it's own unique energy for the cells to go by. you know? we keep telling ourselves certain things and the body will respond in accordance. so to just be careful and keep a check on how you feel. not necessarily your symptoms all the time -- but how you feel overall. we can always tell is something is affecting us badly or not. too bad we didn't know that about our first benzo. ::)

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Yes, you're right! I think it's best not to get obsessed with such things, but it's good to have a sense of what works and what doesn't. Here's the kicker, though: It's not always an immediate reaction. For instance, I took benzos for quite some time and didn't notice what was happening at all. The dizziness didn't start until I'd been taking the medication for quite awhile, and I wouldn't have been able to say it was them until I started reading and finding out more. Perhaps it's the same with these herbal things. Who knows?!
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It's not always an immediate reaction.

 

that's true it's not always an immediate reaction. such as when we take something and we feel it puts us into a wave right away and we can know exactly what put us into a wave. a few things have done that to me like those stupid allergy drops i used the other night that put me in the most excrutiating pain i've ever been in.

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I've read this article about natural products a few times, and what's clear is that, well, nothing is clear! What I mean is, there are subtle actions, in that something potentiate the actions of other things. Those are more subtle effects. Again, that's why -- at least for me -- I think it's best to stay away from the GABA A positive allosteric modulators. The effects could be cumulative, or could act in the presence of other things. For now, safe is best.

 

And later on, when we're all feeling fabulous, free and supremely balanced on our own two feet, we can be wild and crazy and do something wacky like have a cup of chamomile tea!!  ;D

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Lapsis...excellent thread!!.....thank you so very much. Wonderful resource/research  links. ...I was put on Ativan for a sudden true vertigo episode ( can't tell up from down ..can't find the floor type). I went to er and was given Xanax which I had a paradoxical reaction to...in all of thier great wisdom the physician's switched to ativan and mclazine combined. The ativan helped for about one week but I was advised to stay on both medications...I did and my panic and falling sensation increased as well as panic. ...well long story short..after about 18 months of getting worse and increasing the dosage per physician I go ogled ativan and figured out for myself that ativan was not doing me any good ...in fact hurting me . I found BBs and Ashton and tapered over 6 months. I am now at the beginning of month 16. I had a big increase in the undulating dizziness at month 6 after a very bad reaction to amoxicillin. I was advised to go back on the mclazine, which I did. From that time forward I would use the mclazine randomly for the internal motion sensation. Each time I suspected that when my dizziness came back it was worse..often with the sudden disequalibrium sensation that precipitates a mini panic....now thanks to your excellent information I realize that sporadic sx based use of the mclazine ( I was directed to the otc Bonnie by my ent...shouldn't an ent know better)....I too have been to pt, extensive ent texting, vestibular exercises and a neurologist. Out of all of that the vestibular exercises seem to help the most...after they momentarily make it worse. I have some periods of no sx .. but it became worse with head pressure and mild tinnitus after the 6 month mark. .  Does your husband experience d/r and or head pressure as well?

.....I am so sorry that your husband is suffering so profoundly. I wish him healing . You are doing a huge much needed service with this thread. I will never take another Bonnie....we take these things at the direction of trained medical professionals who should know better and we come away with chronic damage.  So sad. ...If I understand you correctly ( I have not read all of the links yet) , the fact that our motion disturbances are part of recovery is a sign of further ear decompensation and ultimately an indication that benzo recovery is advancing?

....thank you so much again...I will be following this thread closely....I took a one time Bonnie dose 10 days ago ....a 7 day wave of acute sx followed .. now I am pretty convinced that the Bonnie triggered it....thank you

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Throughout my w/d I have tried several 'safe' herbals, supplements and vitamins. I had negative results with several of them...including a homeopathic that is safe enough for young children ...Calms Forte...I got PA is from it...I researched it and some of the ingredients ( chamomile and lemon balm).attach to the receptors that benzos do. .magnesium gave me anxiety...EmergC sometimes revs me...

....so I have stopped all herbs, supplements etc. I eat healthy and as organic as I can afford. ...At 16 months out ..damaged by 2 ' safe' drugs prescribed by physicaians I don't trust anything really....coop

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Lapsis...correction...I confused your story with Anne's. My comments are directed to you, but I mistakenly thought it was your husband who suffered the disequalibrium sx....I wish you also relief from this most miserable sx... or continued relief... coop
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Oh, yay!!!  :yippee::clap::yippee: 

So very, very happy to see this support group off the ground and extra, extra thrilled to see it's being spearheaded by our resident scholar, the Dizzy Dame, Ms Lapis herself!  :D  Yay, Lap, great job and already filled with a wealth of information like only you can do it!  This is going to be one heck of a great support group!

 

I'm going to have to return another time to add my full resume here ::) because, well, what else, I'm rocking and bouncing and swaying a little too much today to type much at all.  I do have a request though, Lap, if you're still able to edit your first post, please to add my somewhat rare symptom, "rocking and pulsating to rhythm of heartbeat" to your list.  Feeling very alone with that one, would love to hear from any others who are in that particular rocky boat. 

 

Will be sure to return again when the tide's a little lower.  Yawn, yea, I'll try to stop being so punny!  :P

 

Hi to everyone else.  This sx is certainly not for the faint of heart and can certainly test even the very toughest of us.  It's nice to have our own little place to huddle together and moan and whine and share tips and strategies, and all of our "highs and lows" ... shoot, I did it again, sorry, I'm out of here for now! 

 

Much love to all.

 

:smitten:

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This thread is giving me much needed encouragement today. If the undulating and head pressure would heal most of my other sx would be moderate at best and very manageable. ...

.....Does others find that the dizziness or boatyness or however you describe the motion disturbance effect your ability to read ? ..

..... looking forward to reading everyone's experiences and progress.  coop...

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Welcome and Hello to one and all! Thanks so much for wading into the choppy waters here, Cooperten and abcd! It's SO good to hear from you and to hear your stories, although I'm never happy to hear that others are suffering with this brutal symptom. It's pretty heartbreaking stuff, actually, but knowing that others are experiencing the same things can validate what we're all going through.

 

I know we've all had the experience of being questioned and/or not believed, since this type of dizziness seems not to show up on objective tests. However, my tight leg and foot muscles -- which can be palpated and verified by all -- attest to the fact that my body is trying very hard not to fall. Thankfully, I haven't fallen. But I know that others have, and that's no joke for those whose bones may be on the fragile side. I keep thinking of elderly people who are put on these medications, only to fall and break a hip. That's serious. And sad. And it should be prevented. In any case, please, Everyone, take care, go slow, and sit down if you're feeling really unsteady. Please don't fall!

 

Okay, I wanted to respond to Cooperten on one of the questions about meds: Yes, I think that any of the "antivertiginous" medications can be problematic and are only meant for short-term, acute episodes, as far as I've read. So, that's antihistamines, anticholinergics, benzodiazepines, etc. Central compensation is the process by which the vestibular system normalizes itself, so anything that suppresses or slows that process is not good. Also, these medications tend to cause sedation, which of course, increases the chances of a fall and decreases one's ability to do the very thing required to help with central compensation.  :(

 

And abcd, we'll just wait patiently to hear your story, so please do come back when your boat isn't rocking to and fro so violently. As per your request, I have added your most excellent suggestions to my initial list since I can still modify it. Your post made me break out into a wide smile, and I can assure you, that hasn't happened much lately. There's been a lot more moaning and groaning than smiling and laughing, and I know that everyone here knows why.

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Coop, on the reading thing: I use reading as a way to divert my attention. On-screen action in videos is horrible, though, so I avoid that, but I need to feed my brain. So I read. I have to look away from the screen at regular intervals, though, as we all should. Eyeballs need a break too!

 

Anyone else?

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Here's a list of "Falls Related Medication Side Effects" from the Department of Health in Victoria, Australia. It's clearly laid out and detailed, and I think it gives a stunning sense of how problematic medications can be when it comes to balance.

 

http://www.health.vic.gov.au/agedcare/maintaining/falls_dev/downloads/B1E8_3%285%29%20and%20B2F5%20Falls%20related%20medication%20side%20effects.pdf

 

 

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Hi Floaty Boaters,

Here's a question: Have you noticed any patterns in your dizziness? Is it the same intensity everyday? Mine varies from bearable to completely unbearable. I don't usually get two unbearable days in a row, and those bearable days give me a little window into the world of feeling better. It seems that my brain "gets it" one day and then doesn't get it at all the next day. I know that healing isn't linear but it seems so extreme. On those better days, though, I feel hopeful.

 

I'm so glad you started this! My God I felt alone until I met you & a couple of other people. I will say for the past few weeks my balance has been like a rollercoaster I will have repeat bad days over and over and over again especially during my time of the month. Even when I'm sitting down it feels like I'm still in motion & the head pressure does not help at all either. I just remain prayerful I know this is temporary but this is a bit much. I work in a very large building and had to finally file for accommodations so I don't have to walk across it anymore for work because it was becoming too much. I'm praying for all of us on here and thank you for the links as well.

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This thread is giving me much needed encouragement today. If the undulating and head pressure would heal most of my other sx would be moderate at best and very manageable. ...

.....Does others find that the dizziness or boatyness or however you describe the motion disturbance effect your ability to read ? ..

..... looking forward to reading everyone's experiences and progress.  coop...

 

Its hard for me to focus and my glasses bother me so I just take my time.

 

I would love to hear from folks who overcame this dreadful symptom.

 

Going to my ENT on Thursday. Stay tuned everyone.

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Hi LovingMother,

Thanks for joining in the conversation. I'm so sorry you're going through this too, but I'm impressed at how much you're able to do. Do keep us posted on your ENT appointment.

 

You mentioned something that I was going to ask of everyone as well: If you come across stories -- Success Stories or posts -- of people who had this symptom and for whom it went away, please post a link here for us. The hope and inspiration that such things provide is like water for the thirsty.

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Hi LovingMother,

Thanks for joining in the conversation. I'm so sorry you're going through this too, but I'm impressed at how much you're able to do. Do keep us posted on your ENT appointment.

 

You mentioned something that I was going to ask of everyone as well: If you come across stories -- Success Stories or posts -- of people who had this symptom and for whom it went away, please post a link here for us. The hope and inspiration that such things provide is like water for the thirsty.

 

Its a hard symptom, my ENT doctor said that he never prescribes benzodiazepines unless it is a dire matter. He said the inner ear is so delicate and because of the effects that the medication had on it he said it can cause other symptoms like anxiety and that leads to heart palpitations and soreness in your joints like your knees and ankles because your legs are trying to balance yourself. he's very savvy with all of this and he's just trying to help give me some comfort and relief because I have no choice I have to work I have to raise my son he needs me. but I'm going to search through the stories because I remember reading a couple of people's stories who had almost every symptom under the rainbow in this was one of them and it went away in time. have a blessed night my dear and I'm so glad again that you started this support group thread.

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Lapsis.  Thank you so much for the reply and information. I am one of those if not yet 'elderly', fast ly approaching at age 65. I am also finding that I am far more sensitive to all medications in the last 5 or so years. I was prescribed atenolol in month 6 of recovery due to big b/p spikes ( which have now resolved without meds)...a guite angry urgent care physician insisted I take a 25mg dose.. when I agreed to only 12 she practically had a temper tanteum. The 12 mg drooped my b/p down to 96/63 within 30 minutes with no further intervention. My point being , that older patients are not like 35 year old young men in our ability to manage medications. I insist on being in control of which meds and how much. Fortunately I have a very supportive and aware new physician. ... I try to do daily yoga to help my balance. 

....This is such a great opportunity to meet others struggling with as you point out, invisible sx.. ..already a great help to me.  Wishing all of you relief and healing....coop

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Loving Mother...Minnie has a success story update on the success story board. She suffered head pressure and I believe also boatyness for 7 solid months without let up. She is completely healed now ( I think somewhere around 12 months)..My heart goes out to you. I can't take my dog out on some mornings with confidence...I can't imagine trying to manage a job and raising a young child through this. ...coop
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please to add my somewhat rare symptom, "rocking and pulsating to rhythm of heartbeat" to your list.  Feeling very alone with that one, would love to hear from any others who are in that particular rocky boat.

 

abcd,

 

i know that kitkat shares this rocking and pulsating to the rhythum of hearbeat and i can feel sometimes myself. i think that maybe the floaty boat sensation also has to do with blood pressure and innder ear stuff. just whole stuff. i am able to read most times now except for what happened with my eyes the other night using some allergy relief eye drops that almost sent me to the ER.

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Hi ... thanks for this thread ... lost of good stuff here for me ...

 

Valerian and kava kava send me over the moon ...

 

Chamomile is soothing ... don't "need" it and certainly don't "use" it a lot ... and it is part of my "centering ritual" when things get very rough ...

 

Had an interesting experience with beta blockers several years ago which I believe was connected to benzo use ... and connected to pedal edema ... which showed up three days after the beta blocker use ... and of course the "medical" response was now way, no how ...

 

Just throwing some stuff out there tonight ... doing the "panic - malaria - boaty" thing again ... so "focus" is a bit out of whack ...

 

Good stuff here ... many thanks ...

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I have a question ... last December I got a very deep cold, the first one in years ... lasted three weeks ... and buckets and buckets of congestion ...

 

My wife also got the same thing with the same results ...

 

Since January I have experienced much sinus and ear pressure and almost constant congestion ... my wife experiences the same thing too a much lesser extent ...

 

Is there a connection here with the boaty stuff ... I wonder ...

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Hi Everyone and welcome to NovaScotia!

I am so glad you've all joined me here, and I appreciate everyone's input.

 

LovingMother, you're lucky to have such a savvy ENT on your side! It's good to hear positive stories about doctors, since I do believe there are many good, caring ones out there. Perhaps we can all benefit from whatever you learn from him.

 

Cooperten, you bring up two important points -- age and "sensitivity" to medication. From what I've read, the two can go hand-in-hand, but of course, it's a very individual thing. I've come across SO many articles about benzodiazepines, older people and falls/fractures. Without a doubt, benzos are problematic for all, but especially so in older people. And the issue of "sensitivity" seems undefined but real. We all have different genetics, and that can determine quite a bit when it comes to our reactions to medications. DNA testing is sometimes used to help doctors make decisions about appropriate medications, yet I'm not sure if it's available for benzo prescriptions. Clearly, none of us had it! Anyway, good for you, Coop, to be vocal about what you're willing to take or not take. That's your right.

 

NovaScotia, undoubtedly, ears are sensitive to pressure and fluid, and if there's any of that, it might explain some of your symptoms. Did you check with the doctor about it? Seems like a good idea. I really do think everyone should have appropriate medical tests and checkups to rule out any other issues.

 

 

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