No dizzies, and no balance

Hello all,

I am mostly venting about my day. I am not dizzy today, but I can’t stand or walk without falling. Just curious if anybody else has had a similar experience where they aren’t dizzy, but yet have no balance?

Hi Brian-

I pretty much have that everyday. I don’t actually fall, but I do walk around looking drunk. My balance is always poor. Always tripping, banging into things, and grabbing for something to hold onto.

Is this something new for you?

Kim

Kim,

After you never been dizzy? Or did some med take care of that part of it?

Julie

that confuses me lol. i sometimes have the feeling of “falling”, especially on bad days, and i always think of that symptom as “dizzy”. can u explain that feeling more? and u say now u are not dizzy. what is it like when u ARE dizzy?

it’s raining up here in the north, and the pressure is really bad. anybody else having a bad weather day and making their symptoms worse?

-k

Sorry, I didn’t really explain too well. No, I still have my dizzy spells. (when the room actually “slow spins”. For that I take ibuprofen. Usually within an hour it lets up significantly. Is it the ibuprofen? I don’t really know for sure). My spinning episodes nowadays, happen with no particular pattern. I can have them daily for 2, 3, or 4 days in a row, and go a week without one. Then have another one (on one day only) and go 3 days without one. There is no rhyme or reason that I’ve been able to see.

Back in the beginning of all this (my big crash - about 2 years ago, my big crash being the first time in my life I’ve ever had dizziness)the dizziness was non-stop, 24/7. After about 3 -4 months, I started having “spin-free” times, and little by little I felt like I was getting better. Right now I’d say that I waver between 70 -85% depending on the day. My balance problems remain constant, although some days are worse than others.

Julie, you asked about meds. I’ve been on a very low dose of propanolol since about 2 months into this. Has it helped?? I’m not really sure. I can’t increase the propanolol because of side effects, but I would love to know if I WERE able to increase it, might I have even more improvement? At the same time I started the meds, I also changed my diet significantly. Unfortunately, I wish I could say exactly what has helped me, but I can’t. I’m like alot of us, extremely “med sensitive”. The mere thought of trying something different throws me into a panic attack. :frowning:

Brian, I guess I was just wanting to know if what you are describing right now is a new pattern for you ?

Kristen, normally when I say “dizziness” I mean actual “spinning”, but I can’t speak for anyone else. The stumbling and tripping I usually think as “my balance problem”. Again, good question, because everyone thinks and describes it differently. You mentioned the weather, I notice my symptoms are worse when the weather changes, someone else here can probably tell you why. Thankfully, I live in Florida now (used to live in Michigan - where the weather changes by the minute), but the weather changes here are mild compared to what I used to experience. But in my opinion, you’re not crazy if you are noticing an increase in symptoms due to the weather.

Kim

wow. thanks for the info kim! looks like u are well on ur way! have you tried any other meds? maybe a low dose of one or two others might add to the improvement? i kno what u mean about “making waves” in the condition lol so not wanting to really change much ;-).

julie, how long have U had the 24/7 stuff?

-k

Brian,
I definitely have times when I can’t stand up, yet don’t feel true vertigo–or even head rushes. I could completely relate to your description of your day.
Kira

I have started to think of my balance symptoms as having two distinct components: Vertigo Attacks and Disequilibrium

I actually have an episode of spinning vertigo maybe once a week, although there is alot of variability in the time interval. These episodes are thankfully short - less than 10 minutes. Lately they have gotten less violent. The vertigo is slower and sometimes things don’t develope into a full spin, objects just get jumpy for a while. If the attack is mild I can stand, but could not walk without staggering. The more violent attacks will have me on the floor trying not to vomit.

There are many days (probably most) however, where I feel pretty much constant disequilibrium. This is kind of difficult to explain. I’m pretty much fully functional (I can work and drive and walk without staggering in good lighting) but I have this constant feeling that I’m about to get dizzy. Even little movements of my head give me acute vestibular sensations - like a sharp turn on a roller coaster. I heard some one describe this as “G forces in my head” and thats a pretty good description. When its bad I’ll sometimes get these sensations even without head movement which is really annoying. Along with this disequilibrium is a feeling of tension in my head and a sensation that my head is bigger than it should be (like one of those bobble head dolls). The disequilibrium seems to be relieved by sleep. Its is usually pretty much gone first thing in the morning and then gets gradually worse as the day progresses. Spending alot of time working on the computer during the day seems to make it worse. Even a short nap usually makes it seem better. Also a workout (cardio) seems to help me feel better too.

For a long time I was much more focused on the vertigo as opposed to the disequilibrium. For me the disequilibrium is miserable but it’s the vertigo spells that are debilitating. However I remember when all this started I had weeks or months of disequilibrium before I had the first episode of vertigo. This makes me wonder if I should not be more focused on the disequilibrium. If I can make life style changes or perhaps take medication which will make the disequilibrium better perhaps the dizzy episodes will eventually go away as well.

Chaz

So Kim, you’re another person whom ibuprofen helps when having an attack.

Julie- Yes, I believe that it does. I sometimes wonder if I wasn’t so quick to reach for the motrin bottle, would my spins just go away within the hour on their own?? Stupid, I know, but when it hits me, I can’t stand it, and I don’t have it in me to wait even just an hour to see if it will go away on its own. The anxiety and panic take over. Absolute fear that I’m headed back to the days of 24/7. Its a place I don’t ever want to be again. :cry:

Its sad, because I know I am so fortunate compared to alot of people on this board, and yet I still complain. I’m also cautious about telling people about the ibuprofen, because I’m not so sure it always a good thing. I worry about taking too much of it, etc…

I am curious if anyone else has ever tried it, and if so what kind of results they’ve had. I know Kira’s daughter has had some success with it also.

Kim

Kim,

I understand completely the fright about going back to hell. I don’t ever want to go there again. Being exquisitely sensitive to my symptoms, and pretty much monitoring them all the time, my stomach just sinks if i detect a worsening. And when I’m doing well, in the back of my mind, i’m worried. Although I’m at the limit of what my doc will allow for Klonopin, I keep it at arms length - gives some comfort anyway.

Thanks for sharing that. I know it’s contraindicated in people with cardio risk factors, and I know about the GI risks and that they are hard on the kidneys. I know we’ve discussed this before, but I’m still confused about why we’re suggested to stay away from it - period. Kripes, it’s not uncommon for Topamax to cause kidney stones. And that inhibition of sweat - how is one supposed to stay alive if they don’t sweat? I don’t think it is claimed to cause rebound. My meds are hard on my liver - i still take them. Somebody please educate me about the avoidance of NSAIDs - i must be missing something here, i’m really feeling stupid about this one.

Julie

Julie,
NSAID’s can definitely cause stomach bleeding, and can damage kidneys. However, some people use them chronically. The issue of cardiac toxicity is still being worked out–their platelet inhibition is much shorter than aspirin, and they can cause fluid retention, but the mechanism is unclear. Of the NSAID’s–the safest one from a cardiac standpoint is naprosyn.
The whole rebound issue is controversial.
So, in my house, we buy motrin, no reason, not to buy aleve except habit. When my husband or daughter get some dizziness and/or migraines, it works really well.
On the other hand, my older daughter took it at 14 and it gave her an asthma attack–so I never touch it (logical–not.) Asthmatics with aspirin and NSAID sensitivity can tolerate the COX-2 inhibitors, and when it was on the market, she took vioxx. Now, she just takes tylenol. Actually, she’s on singulair, and hypothetically that should protect her, but it was really scary when it happened. A friend who is a rheumatologist told me that his son developed a true allergy to motrin, his eyes swell shut, and as a rheumatologist, the fact that his son can’t take those medications really bothers him.
Back to MAV and NSAID’s–1) It’s reasonable to feel terrified by the symptoms and want to stop them and 2) for some people it’s the equivalent of an acute migraine and NSAID’s help.
They have their risks, and you just have to be aware of them.
Kira

Got it Kira, thanks. So if I ever do start Topamax, NSAIDs are definitely out.

— Begin quote from “Julie”

Somebody please educate me about the avoidance of NSAIDs - i must be missing something here, i’m really feeling stupid about this one.

— End quote

Yikes, you’d have to live it and learn it. I CANNOT use NSAIDS anymore. Peptic ulcer disease and pancreatitis.
How’s that for NSAID hell? I was taking NSAIDS with estrogen (and smoking) for months, several times a day.
Oh my God How I suffered. My stomach lining still isn’t back to normal.
I won’t even take tylenol. It doesn’t do any good for my head pain anyway!

So I don’t smoke anymore, I don’t use NSAIDS, and I don’t use transdermal estrogen.
They all screwed up my stomach.

Heather

Julie,can you run a med check on naprosyn and topamax in ePocrates?–I don’t have my pda near me, I don’t think there’s any absolute contraindication. Just use caution.
NSAID’s can be dangerous–like Heather has described–and in my older daughter’s situation (wheeze with NSAID’s)–but they can be helpful if used correctly.
Just kind of scary that you can buy huge bottles of them over the counter.
Kira

I did that check on epocrates and found nothing, either way. Incredible, yet they suggest monitoring creatinine for both Top and Naprosyn (although for Naprosyn only if renal disease). But still, I think this should have been listed. They list surprisingly few drug interactions for Topamax.

Heather,

Thanks, you’re right, I take my iron clad stomach for granted. Why mess up the one thing that still works for me.

I’m a convert - no NSAIDs. (Actually I haven’t taken an aspirin, Tylenol or NSAIDs in forever - I don’t get much pain)

Julie

One more thing - Yes Kira, that was part of my confusion - people eat this stuff like candy. Their docs tell them they can take 800 mg tid and they do - every single day. My husband, for example. he quit since his blood pressure is rising. I told him that his blood pressure is regulated by his kidneys and that NSAIDs are hard on the kidneys - he reluctantly switched to tylenol and/or aspirin.

Sorry all about not replying right away. It turns out the falling was just a predicesar to a nasty dizzy spell that put me on the couch the rest of Friday. I should have known. :cry:

Responding to some of the questions I raised, Friday I felt fine, just kept finding myself on the floor. Dizzyness for me comes in many forms, with all or some of the following: light headedness, brainfog (cloudy thinking), a constant sensation of motion (just can’t put my finger on which direction), rocking/swaying sensation, the water bed walk sensation.

Brian, I hope you’re feeling better. The last flare I had started with light/motion/sound/smell sensitivity–and by the end of the day, I couldn’t stand up. There’s vertigo, dizzy, head rushes, imbalance–it shows up in so many forms.
Kira