Tipping over, bad balance

Carrigon

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Today, when I was in the store, I had the classic ME, tipping over thing, where you sort of lose your balance or almost walk drunk. I really think it's related to the POTS, lack of blood flow to that part of the brain.

I have been less lightheaded lately, but it's because I cut out the garlic and nitrates in my diet. I really notice a big difference with that. Onions, too. I found that onions make my cognitive symptoms alot worse for some reason. So cutting all that out has helped.
 
J

jamesrayenz

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Cognitive symptoms are subtle and are often found only when Neuropsychological testing. They include the following:

Poor "executive functioning" (to absorb and interpret information and the ability to make decisions based on that information)

Inability to sustain attention, and

"Working" memory (keep in mind that recently learned information and the ability to use it right away with problems)

Cognitive often lead a normal life for the patient and interfere with the ability to earn a living impairments. They can cause great emotional distress.
 

Carrigon

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I've suffered with cognitive symptoms most of my life. They are NOT subtle. Try short term memory loss, aphasia, confusion, impaired judgment, using the wrong names for things, like calling a chair a hat. The inability to retain things you read. Sensory input overload. The list goes on. I don't think you even read my post anyway. Cognitive symptoms are NOT hard to detect, anyone that spends time with someone who has it will notice it.
 

Wonko

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what Carrigon said

cog/neuro sysmptoms arent subtle - people do notice - sometimes quite rapidly - they are the most disabling aspect of M.E. in my case - you can overcome most physical limiations if your brain works properly - but if it doesnt......

I'm not sure about the balance/link to POTS tho - as far as I can tell I dont meet the criteria for POTS or any OI type condition (which isnt to say I dont have sigificant issues with standing, balance or even sitting at times - I just dont meet the level of severity required for a diagnosis when I've tested) - but I definately have the walking drunk, losing balance, sitting hunched etc syndrome
 

Dainty

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I can relate to the "tipping over" symptom - that really is the best way to describe it. Most of the time I automatically ensure that I have something to help me maintain balance, such as my cane or simply things to hang onto, lean into, or fall into if needed (living in tiny spaces does have its advantages!).

But last summer when I had a few rare days when I could walk for a while without support was when I realized I had a "tipping over" problem. I'd be walking with the dog, feeling okay, and then suddenly I realize that I've been falling sideways for the past half second and I have barely enough time to correct myself before it'd be too late. That was the most disturbing part....I didn't recognize myself as dizzy at the time, or weak, or feeling off balance. Normally when a person starts to fall over they recognize right away that they're beginning to fall and then right themselves. It was like that natural ability to recognize the shift was missing. Very disconcerting. The longer I walked the worse it would become, several times I almost hit the ground. The dog would freak out and move out of the way when it happened....some help he was! :tongue:

I find that using a cane helps, though sometimes that isn't enough and I need both a cane and another person to assist me.

And that isn't to say I never feel dizziness or vertigo, because I have those symptoms as well. It's jsut when you're falling over in the absence of those symptoms it's really strange.
 

Wonko

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I find Zithromax an antiobitic will solve the neuro/symptoms with in 24 hours!
I'm really pleased a cheap antibiotic works for you - however as not all of us fall over because of ear infections this may not be the miracle cure people with M.E. have been looking for
 

Sing

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Carrigon, Wonko, Dainty, I am with you these kinds of symptoms!

The unsteadiness, clumsiness, poor balance seem related to ORTHOSTATIC INTOLERANCE, for one thing.

Secondly to POOR COGNITIVE FUNCTIONING--my brain just isn't interpreting and coordinating information well from the sensory level, any more than on the level of thinking and feeling.

Then too, I think that CHRONIC MUSCLE CONTRACTIONS contribute. With the resulting poor oxygenation, compression of nerves, and displacements in their correct positions, the feedback from the muscles about where they are and what they need to execute tasks is skewed: this is called poor PROPRIOCEPTION.

What helps me is good stretching in the morning, even rolling on hard wooden or foam rollers to release contractions. Then too, taking .5 mg (the lowest dose) of Fludrocortisone, which helps retain water and salt in the body and so helps with the Orthostatic Intolerance. Then trying to remember to breathe well, move slowly and deliberately, and pay better attention to what I am trying to do physcially.

All this is work and as with so many of our symptoms, I have to do consciously what a normal, healthy person's body does unconsciously and automatically.

Sing
 

Sallysblooms

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Yes, I do fine and then boom, lightheaded, dizzy and unbalanced. Then I sit.

My hubby is out of town for two days. I usually stay with my parents, but my sister came to babysit me yesterday, so sweet. I feel so much better if I don't have to walk a lot and get up, etc.
 

xchocoholic

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Today, when I was in the store, I had the classic ME, tipping over thing, where you sort of lose your balance or almost walk drunk. I really think it's related to the POTS, lack of blood flow to that part of the brain.

I have been less lightheaded lately, but it's because I cut out the garlic and nitrates in my diet. I really notice a big difference with that. Onions, too. I found that onions make my cognitive symptoms alot worse for some reason. So cutting all that out has helped.
Congrats on figuring this out. I know how it feels to find a reason for a symptom ... IMHO, we really need to look at CFS/ME as a group of symptoms not as a mystery illness ... too many of us are responding to therapies that help.

FWIW ... I "think" gluten was causing my balance / ataxia symptoms because this went away one year after getting this out of my diet. I'm a mess when it comes to gluten ... ; ) But, since I removed dairy, soy, etc at the same time, I really don't know for sure what worked.

It's much easier for patients to tell what symptoms are related to what once they're gone .. Medical professionals have specific tests, like the GTT, Rhomberg or tilt table test that they can use to determine a diagnosis but from what I've seen this info isn't being explained to those of us with CFS. Thankfully we have the internet and can google and try to understand all this now .. Granted it's complicated but most of us seem to get it once it's explained.

For me, my gluten ataxia caused me to fall over without realizing it until I hit a wall or whoever was next to me. I also had a lot of trouble with my legs. My legs would get heavy after I walked say 100 feet and then would eventually forget how to walk. I was having to think about moving my right leg then my left, etc etc ... My arms were too weak for me to use a walker so I used a motorized cart as often as possible ... And my vision would get so bad that objects looked like they were moving around in front of me. All this went away when the ataxia did ... Unbeknowst to me, I had failed the Rhomberg which is a test for ataxia. Dr. Hadjivassiliou describes these symptoms as all being from gluten ataxia ...

I'm going to take the onions and garlic out of my diet to see if it helps my OI ... thanks ... X

PS. Part of my dizziness was from my blood glucose dropping too. I could barely stand up in the mornings until I got this under control via the Paleo / low carb diet. I'd say that part took 3 + months for me to correct. But, I don't feel like I totally got a handle on it for a couple of years though ... my fasting BG level is between 86 - 97 now ... : ) ... KOW
 

Stone

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Oh I hate the imbalance problems with CFS. They were among the most pronounced problems when I first got sick, and now they come and go at inopportune times. It's embarrassing when it happens around certain people who don't understand and I get the feeling they think I'm mildly intoxicated, which technically I am when you consider how toxic most people's laundry detergent, dryer sheets, shampoo, conditioner, antiperspirant, hair products, cleaning chemicals and air "fresheners" that are all over them and how they are affecting me. Oh boy what can ya do?
 
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i am positive for a long list of infections and virus along with XMRV and have tired a lot of treatments since 1987, but find Zithromax will clear the neuro symptoms in 24 hours....... i find that three months off Zithromax is the limit before the tipping over/bad balance is back in the picture. This treatment does not clear the cognitive problems.
 

muffin

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These are COMMON and HORRENDOUS symptoms of CFIDS

" have been less lightheaded lately, but it's because I cut out the garlic and nitrates in my diet. I really notice a big difference with that. Onions, too. I found that onions make my cognitive symptoms alot worse for some reason. So cutting all that out has helped."

I too have severe problems with balance. I am constantly falling and having my husband grab me before I hit the floor. Mind you, I have hit that floor more times than I can count.

My husband and I lived in LA for two years and we had a number of bad earthquakes. When we moved back East, when I would put my head down to sign a check at the supermarket, all of a sudden, I was certain we were having an earthquake in the market. I would pick my head up, look around to see if others were reacting, and sure enough it was just me and my dizzyness and no earthquake. But that was the least of the lack of balance, dizzyness, etc.
It is BAD. No jokes here. I know I'm in trouble when I start dropping things (like glasses/cups) and then that odd gravity push/pull thing starts up and I have to run and lay down before I hit the ground.

Oddly you nailed something I picked up on years ago: onions and garlic. I went on an onions/garlic binge about 10 or so years ago where I put onions/garlic into all the box/frozen/can/microwave food. I put both in all meals for months. That's when I realized that my blood pressure was at its lowerst with my sister (who was a nurse and then quit) would take my BP and it would sit at around 50/30. She would FREAK and scream we had to go to the ER, etc. I just went and slept for 3/4 hours and the BP came back up again. It finally dawned on me that the onions/garlic was indeed lowering my blood pressure as many health mags said would be the case. Well, I had PROOF that onions/garlic did in fact drop the BP and in my case, waaay toooo low and into the dangerous levels. So now I do stay away from onions and garlic except in small amounts. So you were on to something there and the health mags are on to something that garlic/onions do drop BP.

Drink lots of fluids and eat salt. That's what my internist told me and that's what I do.
 

bakercape

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I wonder

Today, when I was in the store, I had the classic ME, tipping over thing, where you sort of lose your balance or almost walk drunk. I really think it's related to the POTS, lack of blood flow to that part of the brain.

I have been less lightheaded lately, but it's because I cut out the garlic and nitrates in my diet. I really notice a big difference with that. Onions, too. I found that onions make my cognitive symptoms alot worse for some reason. So cutting all that out has helped.
If it could have anything to do with the heat. I have had the worst dizzy spell I have had ever since having CFS in 23 years this week. It seems to coincide witht the crazy high humidity and heat. I came as close as I ever have to passing out the other day while sweeping in my kitchen. Does anybody else get worse dizzy symptoms when it's hot and humid? Do you notice this Carrigon?
 

muffin

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YES! Heat and humidity knock the stuffing out of me. The sun also kills me too.

We are a very sensitive group of people - and I do NOT mean that in any demeaning way. Our bodies are damaged and we over-react to everything. Damaged body...
 

ixchelkali

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Yes, mine gets worse in the heat, too. I assume that it might be that low blood volume thing, so I try to drink lots of fluids and increase my salt intake.

I'm glad I'm not the only one who can see a differance between feeling dizzy and I-have-to-sit-down-NOW, and the balance thing. Sometimes I'm not having a problem with OI, but I just start to tip. Like I can't orient myself upright. If I can just touch something (a wall, another person, my walker, whatever), even with one finger, then I'm okay. Sometimes if I'm walking with someone I'll just rest a hand on their shoulder.

Climbing a step-stool to replace a lightbulb is murder, because I have to use my hands, so I can't balance with them. I've found that if my husband grabs onto the waistband of my jeans, that helps. But I still don't like ladders anymore.
 

bakercape

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Ya

Yes, mine gets worse in the heat, too. I assume that it might be that low blood volume thing, so I try to drink lots of fluids and increase my salt intake.


Climbing a step-stool to replace a lightbulb is murder, because I have to use my hands, so I can't balance with them. I've found that if my husband grabs onto the waistband of my jeans, that helps. But I still don't like ladders anymore.
I've given up going higher than 2 steps on a ladder because I am sure I will wind up falling. I get that tippiness too where I feel like I don't have my bearings and I need to touch the wall or an object too. Its a wierd feeling. Like being on a ship that is rocking some.
 

alex3619

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Hi Carrigon,

My own favourite is confusing library with bookshop and vice versa. This was when I was lecturing at uni, so it probably confused a lot of students. To this day when I want to say either word I give it a micropause to make sure I am using the right word. Other word confusions have happened, but they happens so often and I no longer feel alarmed and so don't remember the details. Neurological deficits in CFS and ME seem to span the range from very mild that are hard to detect, to so blatant that I cannot understand why even a biased doctor can't see them. With word confusion, I find I can use either similar sounding words or words with similar (but not quite right) meaning. Of course there are the times when I am so out of it that all I can do is speak the words just spoken to be...

Bye
Alex

I've suffered with cognitive symptoms most of my life. They are NOT subtle. Try short term memory loss, aphasia, confusion, impaired judgment, using the wrong names for things, like calling a chair a hat.
 

alex3619

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Hi Wonko,

Yes people do notice, but the favourite theories tend to be 1. I am stoned 2. I am drunk 3. I might be crazy 4. I might be imbecilic, in need of "special" care. When I fall down a flight of stairs everyone seems to think I tripped, not that I have neurological problems - even if it happens three times in a row.

Bye
Alex

cog/neuro sysmptoms arent subtle - people do notice - sometimes quite rapidly - they are the most disabling aspect of M.E. in my case - you can overcome most physical limiations if your brain works properly - but if it doesnt......
 

taniaaust1

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Climbing a step-stool to replace a lightbulb is murder, because I have to use my hands, so I can't balance with them. I've found that if my husband grabs onto the waistband of my jeans, that helps. But I still don't like ladders anymore.
I wish i'd seen your comment the other day.. A few days back, I decided not to wait for my boyfriend to come and visit to get him to change the blown light globe and ended up falling off the table cause i lost balance onto the floor. (That sure hurt as i lobbed on my already injured shoulder so was then on the floor screaming and crying in pain, Im surprised my neighbours didnt show up).

I just forget at times how bad my balance can be still (that was the second time ive gone down in the past 2 weeks)... but im MUCH BETTER than i used to be