Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yep.. another hard-to-describe symptom is hitting these days.. and not going away.
Was wondering if others have experienced it or know the better name for it.. instead of the "bubbles in the brain feeling"?
It isn't really "vertigo". It isn't like being "dizzy". It isn't anything I remember having before.. not exactly.
It feels like if I am taking a step or two forward.. my brain is still back "there" where I started from.. and it takes a few seconds to "catch up".
I do remember having that "blank" feeling before.. but it was when standing still and like a mini mini few second seizure. This is different... but ... hmmmm.. like a bubble is in the way of the signals reaching the area they should.
It is VERY annoying.. and makes me feel off balanced somewhat. It is almost as if I am floating through the steps I take... and sometimes things are sort of swaying or floating for a second in front of me.
I am pausing at the top of the stairs and trying to focus carefully so I don't fall down them.
It has been hitting on and off for a few weeks or so... and seems to have no pattern as to when or where it happens... or what increases or decreases the severity.
Some days it happens once or twice a day.. other days... like today.. it is constant with every movement.
It is as if the brain isn't getting the message to hold still when it should.. or it won't keep up with my movement when it should.
OH.. ok... Here is what I "see" when trying to describe this..
My brain has gotten smaller in the skull.. or pulled away from a sac it is suppose to be attached to.. and when I walk or move.. the brain bounces up against my skull before it gets back into the normal position.
Oh well.. that probably makes NO sense.. but if someone "sees" what I am describing here.. GOOD!
Even while trying to read this screen.. my eyes move to the right as I follow a line of words. Then to bring them back to the left to catch the next line I feel that "bubble" of hesitation.
No pain... just VERY unsettling... to almost a panic point.
I have stopped all meds as of last week... was herxing pretty rotten.. except for ibprophen, sudafed, nyastin.. and I have stopped all supplements/vitamins.
The chiropractic neurologist has managed to calm it down a bit when I go.. but 2 days later it is back again... IF there is a 2 day break at all.
The ride to the chiro neuro is 2 hours one way.. and I am trying to go 2 times a week just to get SOME relief from it.
I thought it might be due to the bouncy train ride to NY and back.. cause it kinda feels like when you are out on a boat for a long while.. and you first step on shore and you don't have your "land legs" under you.
But I would THINK it would be "fixed" by now if that were the case.. and no.. I can't remember when it started.. before the train ride or after?
posted
From one bubblebrain to another in every way! Vertigo comes in all shapes and sizes and what you are describing is a huge part, not all, of mine.
A slow right behind the beat movement (on good days) that makes you feel off balance.
Before lyme dx, I road a train four hours a day to work and back and for ages, I thought I had mal debarquement syndrome, which "they" say comes from planes, trains, etc but now I think it is probably undiagnosed lyme.
A constant feeling of up and down, up and down, like a boat or like you feel when you get off the boat. Bad days the up is higher and the down is lower.
Probably you have some adjustment going on after stopping meds and still herxing slightly.
Last night I began to wonder if you could take out the vestibular system and still survive, just cut it out, of course you would be probably deaf and couldn't walk at all which I guess is not a great tradeoff.
Hang in there TC, I wish I could tell you exactly but I can't but believe me, I totally understand and have great sympathy for you and this particular symptom because there is no escape from it.
Keep us posted! and don't walk a tightrope today!! Lymelady
Posts: 484 | From Fredericksburg, Va USA | Registered: Sep 2004
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lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
tincup, this is exactly what i've had for hte past month also..it actually makes me feel weak and panicky...like i'm on the edge of 'losing it'...
for me i hope my herbs will help..but i know what you mean...I think it's a form of vertigo..not dizzy..just woozy and off balance alittle..
I"m right with you..it's new for me also..never had it before...weird we both have it...
lilly
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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posted
Hi Tincup! Something I might try is to stop even the sudafed and ibpropen. I have had trouble before with cold remedies causing dizzy spells and actually feeling like I am on speed. And this was before I was diagnosed. Especially if you have been taking them alot and long term.
Just a thought! I am no expert at all.
Sure hope you feel better as we all need your sense of humor so much! And just because it is the pits to not feel in control. I at least like to feel that way even if I am not!
Blessings! Sue
Posts: 124 | From Mound City MO USA | Registered: Sep 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
AMAZING..
Four replies.. all different.. and all with GREAT ideas.
Huggy-poohs to all of you.
I will go through them better tomorrow... and respond.
THANKS for taking time to share... and for caring.
I am headed to bed..
As graceful as a frog with wings I go...
As long as I don't bump my butt on the ground with every hop in that direction.. I should make it!
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Tincup, I had a friend look at your new symptoms..Said you described the feeling to a tee of her Babs and that you need the meds much longer..Took her many months...
Posts: 2360 | From SE PA | Registered: Mar 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Lymemomtoo..
I think I know your friend.. and in MY opinion.. she is a FRUITCAKE!
I will deal with her later!
Thanks for the suggestions about sinuses and allergies. I will be considing these things as I ponder the problem. It could very well be... which makes it hard to trace down and put a finger on.
Blood sugar is good.. but you are right.. not checked BP for a while. Will do so I can rule that in or out. Thanks for the reminder!
Lymelady..
Actually... I have a feeling this is all YOUR fault.
I was thinking back to MY old episodes with the vertigo when you had questions and asked for help.. a place I don't like to recall.. at all!
I actually wondered if I was having "sympathy pains" for you!
This stuff hasn't bothered me for years.. there I go.. jinxing myself AGAIN... so I figured you making me re-live it all caused the problem!
HA! You wicked woman you... hehehe
Please don't tell me your ears would fall off every two months or so and you had to have them surgically stuck back on... cause at this point.. I am SURE mine would do the same!
I don't WANT it to be vertigo! I HATE vertigo. Can't you come up with a condition I would LIKE to have?
Ahhhhhhhhhhhhhh!!!!!
Actually.. you ARE making me look at a possiblity I don't want to go back and visit. Thanks for the reality check. I needed that.
Lilly..
Another one of the ones who put suggestions into my weak brain and I develop the condition. HA! I am sure the ducks would love to here me say all that stuff and mean it! After all.. aren't the ducks the ones who keep claiming it is "all in our heads"?
You said..
"...actually makes me feel weak and panicky...like i'm on the edge of 'losing it'..."
Yes.. I am afraid you described it perfectly.
SO WHAT THE HECK IS IT?
I would SO hope the official diagnosis would be "lack of chocolate".. but I don't think either one of us are that lucky.
I AM considering Babesiosis.. darn darn darn. Just don't want to hear those words.. AGAIN.
Let me know how you are doing. And I hope the herbs help!
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Hey Tc is this what it looks like?
[This message has been edited by treepatrol (edited 08 November 2004).]
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Mulelover..
Let me ask.... EVERYONE is dying to know.
Do you really LOVE mules? Do you have mules as pets? Do you raise mules.. like on a ranch or something.. and I don't mean a husband (the big old corn fed mule species) or teenagers or two year olds (the "I'm not doing THAT" species).
hehehe
Anyhow.. I am happy to see you jump in and share with me. I don't care if you know the answers or don't. Sometimes just ONE word will "ring a bell" for someone and then they can explore that area further. I hope eveyone who hesitates to post knows that and will add their comments.
And I hope you know that any response is welcomed and appreciated.
So.... thanks!
You said..
"And just because it is the pits to not feel in control. I at least like to feel that way even if I am not!"
EXACTLY! You have been there I see.
Yes.. I HAVE been on the sudafed for a good while. It does tend to make me a bit wired sometimes.. especially if I try to take B-vitamins with it. So it is something to consider.
Thank you for pointing that out.
I am waiting on some recent blood work I had done to come back. It MAY let me know which.. if any of the 7 tick borne diseases might be responsible.
I wish it were that simple. A blood test that actually can say 100 percent what is going on.
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Hi Tincup,
I know what you mean - I have had the same/similar on off for years.
Also, if I turn my whole body too fast, I can really notice it more.
It is not nice, and I don't know what to advise except for the weirdest reason Diet Coke would take the edge off this for me. Mus be some chemical in it.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Hey Tincup, sorry you are still not tick'in too good...Not sure my friend is a fruitcake but I'm sure you will have consequences to deal with...
We all hope it isn't Babs but you might need to investigate!!!!!
Treepatrol is too cool with designs...Maybe a design for a tick with it's head in the sand would be good..With it screaming, no not Babs!!What do ya think????
Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hey Tin, I am not gonna be of much help here, cuz I don't know? The only thing I can think of is sometimes it feels like my brain or thoughts are moving in slow motion.
I sure hope you find out what it is and it gets better for you soon.
posted
Tincup & Lilly, This is exactly what I had been going through for 3 weeks! You explained it so well to a T.....it is so unsettling. If I moved my head to quick, I had to wait for my brain and eyeballs to catch up! There was no way to get behind the wheel of a car. Just the thought of trying to look both ways, oh brother!!! I had an MRI, saw an ENT and of course nobody could find anything.
The interesting part is I just came off 7 months of Mepron, Zithromax, Ceftin and Artemisinin when all this nonsense happened. It went away as fast as it came and I'm now on Ketek awaiting lab results for babs and other yucks. I don't think the babs are gone. I've had more fatigue and pain, and some day and night sweats. Babs is so hard to get rid of!!!! Grrrrr..........
Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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posted
Your brain bubbles sound familiar, and have me thinking about the famous 'swiss cheese' pattern of bloodflow in the brain that Lymies display in SPECT scans. This is turn causes me to think of swiss cheese-flavored bubble wrap, releasing tiny puffs of fondue odor every time one of the bubbles is popped. Nope, nothing wrong with my brain.
My experience of vertigo comes in 31 flavors and then some. Sometimes the body moves and the brain doesn't. Sometimes the brain moves and the body doesn't. I get queasy and lose my place in my body or in physical space at the drop of the proverbial hat, and lately, its been raining hats.
You know that brief but intense 'feels like I'm falling' that somestrikes strikes between sleeping and waking? In my case, it happens with my eyes wide open.
A friend accused me the other day of repeatedly doing a pantomime of a nervous flyer, whose plane has just hit a pocket of turbulence. 'Your hands grip the arms of your chair. Your eyes dart up and and around anxiously. Sometimes your head bobs up and down.'
The variations on this theme can get pretty intense. Well beyond "like I was going to lose it" to "and then I totally lost it."
Recently, during 12 days on Biaxin, I had these long 'fits' of chest pain, labored breathing, shakes and full body spasms that began as sudden attacks of vertigo, brought on by watching TV, or even just being in the room when one is on.
The last time it happened that tell-tale queasiness in the diaphragm stayed with me the whole time, culminating in tonic seizures where my tummy caved in and I folded up like a hide-a-bed mattress.
Those are some bad-ass bugs I got in my brain, Borrelia of the biker-bar, chain-gang variety. There goes the neighborhood.
Oh well. Sometimes you just have to wake up and smell the fondue.
[This message has been edited by paulscha (edited 10 November 2004).]
Posts: 199 | From Santa Cruz, CA | Registered: Oct 2004
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posted
It should be a new term for us ``Bubble Brain''.
I get it mostly when starting to going down steps. There is no vertigo, just a hesitation with a felling that you are going to float, could be for the lack of peripheral vision or depth perception or both.
To take that first step there is a lot of hesitation, trying to get my bearings, feels like brain fog,but it seems your somewhat in control. Sometimes, knowing that my jello legs might give out, there is a slight hesitation.
It's more noticeable going down steps. Noticed it especially when going down steps, without railings or when stepping down from a sidewalk onto the street, I can spend at least a minute or two at the curb before making that step down onto the road, very carefully.
Few weeks ago while going down an escalator at the mall, when approaching the bottom, all hell broke out. The people behind me thought I was crazy, griping onto the railing with both hands for dear life, one leg up in the air, while 3/4 of way down the escalator. There was also a felling weightlessness. When I got to the bottom and on to stationary ground, I cracked up laughing; for sure, I thought they would take me to the funny farm for sure. Never will I go on one of those again.
Can't wait to go skiing this winter and hitting the chairlift, maybe I should stay home instead.
It could be that that subconscious is saying, ``watch your step you can fall down''!
It can be the low blood pressure, my lowest recorded about 85/45.
On the eyes, do you have any problems with them? For me there is no eye movement, and neuritis on around the left optic nerve. Have to move my head in the direction that I want to see.
I guess bubble brain can be caused by any of these systems or a combination of all of them. Mainly from what the eye does or does not do!
Thank God for this web site, may times we go on without knowing what's going on with us, until someone makes a comment or observation of a particular symptom. Then we can rest assure that were not crazy, and are not alone.
Tincup I must of had bubble brain for at least 2 to 3 weeks now, could not put my finger on it, thanks for pointing it out.
Alex
Posts: 77 | From Chester NJ 07930 | Registered: Oct 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You guys are as sweet as apple pie!
I love the descriptions you are sharing.. and I sit here and say..
"That's ME, THAT'S me!"
Up to this point.. many of the folks responding here or by email... feel it is possibly related to Babesiosis.
One person recalled Dr. B giving a talk and mentioning the "floating feeling".. and how it was related to Babs.
I just got the results of my lab work.. some of it.
So far... negative on Bartonella and Rocky Mountain Spotted Fever. The others will be here next week some time.
Of course we all KNOW just because the test is negative.. it doesn't mean it isn't there.
But.. let's see what the other labs show.. and maybe we can get a better idea???
Perhaps that will help others later down the line answer their concerns.
Oh...
I stopped the Sudafed and ibprofen as suggested by our lovely memeber, Mulelover.
Results- If I had pulled out the Reynold's Aluminum Foil.. and wrapped it all around me..
Then gone outside and stood in the field..
Folks going by would have sworn they saw the Tinman.
And by the way I walked and moved..
They would have drained their cars engines... right then and there.. and thrown the oil all over my joints...
Cause... boo hoo.. I was so stinking pitiful.
Thank you Mulelover for your suggestion! I will remember that next time I respond to YOUR posts!
HA!
Actually.. I NEEDED to do that.. and hesitated because the past times I have.. it was miserable.
So.. your suggestion WAS valuable.. and without your little "push".. I wouldn't have done it.. and I now have ruled that out.
So... thanks! Just "funning" with ya.
Please keep the descriptions and suggestions coming. If nothing else..
quote:Originally posted by Tincup: Yep.. another hard-to-describe symptom is hitting these days.. and not going away.
Was wondering if others have experienced it or know the better name for it.. instead of the "bubbles in the brain feeling"?
It isn't really "vertigo". It isn't like being "dizzy". It isn't anything I remember having before.. not exactly.
It feels like if I am taking a step or two forward.. my brain is still back "there" where I started from.. and it takes a few seconds to "catch up".
I do remember having that "blank" feeling before.. but it was when standing still and like a mini mini few second seizure. This is different... but ... hmmmm.. like a bubble is in the way of the signals reaching the area they should.
It is VERY annoying.. and makes me feel off balanced somewhat. It is almost as if I am floating through the steps I take... and sometimes things are sort of swaying or floating for a second in front of me.
I am pausing at the top of the stairs and trying to focus carefully so I don't fall down them.
It has been hitting on and off for a few weeks or so... and seems to have no pattern as to when or where it happens... or what increases or decreases the severity.
Some days it happens once or twice a day.. other days... like today.. it is constant with every movement.
It is as if the brain isn't getting the message to hold still when it should.. or it won't keep up with my movement when it should.
OH.. ok... Here is what I "see" when trying to describe this..
My brain has gotten smaller in the skull.. or pulled away from a sac it is suppose to be attached to.. and when I walk or move.. the brain bounces up against my skull before it gets back into the normal position.
Oh well.. that probably makes NO sense.. but if someone "sees" what I am describing here.. GOOD!
Even while trying to read this screen.. my eyes move to the right as I follow a line of words. Then to bring them back to the left to catch the next line I feel that "bubble" of hesitation.
No pain... just VERY unsettling... to almost a panic point.
I have stopped all meds as of last week... was herxing pretty rotten.. except for ibprophen, sudafed, nyastin.. and I have stopped all supplements/vitamins.
The chiropractic neurologist has managed to calm it down a bit when I go.. but 2 days later it is back again... IF there is a 2 day break at all.
The ride to the chiro neuro is 2 hours one way.. and I am trying to go 2 times a week just to get SOME relief from it.
I thought it might be due to the bouncy train ride to NY and back.. cause it kinda feels like when you are out on a boat for a long while.. and you first step on shore and you don't have your "land legs" under you.
But I would THINK it would be "fixed" by now if that were the case.. and no.. I can't remember when it started.. before the train ride or after?
All comments are welcome.
Thanks!
Posts: 190 | From BC Canada | Registered: Jul 2004
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Hi there Tincup,
Don't know if this will help but I vaguely (very) remember reading something on this site with what you're describing by someone else.
It was either a brain or eye problem caused by a TBD. But someone else mentioned the same thing and I think it's one of the very many symptoms of a TBD and not caused by a reaction to antibiotics.
I had severe double vision for awhile myself(aaahhhh, two sugar-free pumpkin cheesecakes!!). If I find that posting I'll let you know.
BTW, now my vision is just blurry and I can't find the cheesecake!!!!!!!!!!
Posts: 6093 | From Columbus, GA | Registered: Jul 2004
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posted
Tincup wrote: I think I will just move out to the barn now... and be happy when someone tosses me some fresh straw!
Didn't think anything would get a grin out of me this morning, but you got me with this.
Hearing your medical news, and then seeing your sense of humor intact and on the job, is like one of those zen koans - very edifying. Thanks for being you.
Posts: 199 | From Santa Cruz, CA | Registered: Oct 2004
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Thanks for giving us an update Tin...you poor little thing...TEN disease!!! Yuckooo! I don't know how you keep your sense of humor either!
And another..Thanks for being YOU! Your sense of humor keeps me going too.
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