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Old 08-21-2008, 08:50 AM   #1
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cknmbbl HB User
Swaying when standing

Hi,
I have noticed that when I am standing at the sink to do dishes, or putting on make up I start to sway side to side. It feels like I am doing it because its easier to sway then to stand still. I'm wondering if its similar to the riding in the car thing. It's better when I am riding or driving in the car. Has anyone else noticed this. Does anyone know what it means. I don't think I have done this before and am a little concerned. Maybe it's just a coping tool, I don't know.

CK

 
Old 08-21-2008, 09:00 AM   #2
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willholl HB User
Re: Swaying when standing

Quote:
Originally Posted by cknmbbl View Post
Hi,
I have noticed that when I am standing at the sink to do dishes, or putting on make up I start to sway side to side. It feels like I am doing it because its easier to sway then to stand still. I'm wondering if its similar to the riding in the car thing. It's better when I am riding or driving in the car. Has anyone else noticed this. Does anyone know what it means. I don't think I have done this before and am a little concerned. Maybe it's just a coping tool, I don't know.

CK
CKNMBBL,

I have noticed this too, but I am not sure if I am actually swaying or just feel like I am swaying. I also tend to feel better while I am in the car, though I don't think I feel well enough in general to drive.

I am getting over a really bad headache, lasting about a week, which in conjunction with increased dizziness sent me to the ER. My primary care doctor thinks my dizziness is separate from the headaches, diagnosed a tension headache and recommended a chiropractor, which I am trying tonight.

I am also wondering if TMJ plays a factor in this too, as my dentist noticed severe grinding and prescribed a night guard about three years ago.

willholl

 
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Old 08-21-2008, 09:07 AM   #3
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lookng4answrs HB User
Re: Swaying when standing

Hey willholl and CK,

I think we are cut from the same mold. I have the swaying thing too and it's horrible. It's especially bad when I'm talking to someone like a neighbor or something (increased anxiety as well). I don't know if I'm actually swaying (I call it rocking) back and forth or just feel as though I am. I put this high up on my list of symptoms when I saw Dr. Hain and Cherchi and Dr. C said it was a migraine symptom. For me it's by far the worst in the kitchen and in the shower. I notice CK you have trouble in the kitchen as well--maybe it's just that we don't want to cook...

The dizziness/rocking/swaying/bouncing floor feelings are SO much worse when my neck is tight. My neck and scalp are so tight it's unbelievable. Usually after I have a bad round of rocking or bouncing then I get a head ache. It's weird--the head ache almost feels good after the bouncing because for me I'd so much rather have that than the vestibular symptoms.

I am seeing the oral surgeon for the TMJ xrays at 1pm and am so worried.

Hang in there, we're all going to get through this somehow.

L4A

 
Old 08-21-2008, 09:08 AM   #4
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Re: Swaying when standing

Not sure about this, but I do know if I stay very still, I start to sway or move a little bit and feel woozy. I actually feel better if I move!

Willhol - there's not a lot of info re: TMD and these problems BUT I can tell you that I recently have had problems with my TMJ and am wearing a lower dental splint and since it all started, I have been dizzy/woozy and extremely sensitive to light (plus have snowy vision). I was told that the TMD is not the cause, but rather, may have triggered something else.

I will be VERY interested to hear what your chiropractor says, so please be sure to post a followup, ok? Thanks! BC

 
Old 08-21-2008, 10:01 AM   #5
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Re: Swaying when standing

The swaying goes away with the migraine meds. Mine went away very early in migraine treatment. Within 2 weeks. It's the motion sensivitivy, and visual symptoms that have not responded yet. So there IS hope for the swaying if that's your problem

Rich

 
Old 08-21-2008, 10:25 AM   #6
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Re: Swaying when standing

L4A,

The tightness in my neck and shoulder muscles is how my primary care doctor diagnosed my tension headache. She poked the side of my neck and I felt it for at least five minutes! It's also more on the right side, where my VN weakness was diagnosed. My guess is that the muscle tightness is also what is causing your headaches.

It would seem logical that being dizzy could cause the anxiety/tension that would lead to a tension headache, and also that a headache could aggravate dizziness. I am optimistic that the chiropractor may be able to help.

willholl

 
Old 08-21-2008, 11:31 AM   #7
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Re: Swaying when standing

L4A,
I about fell over when I read your post. No pun intended. I was talking to a neighbor out front this am and the rocking started. I went and stood up against a tree. I felt like a idiot. We have granite counter tops and I used to think that caused some of my issues. My husband about died because early on I thought if we replaced them I would be better. This illness has cost us a fortune. We replaced all the rugs because their patterns bothered me, we have all new ceilng fans, we added lighting changed some colors....
Thanks to everyone who replied. I hadn't noticed this before to this degree and didn't know if it meant something else was going on. And yes, I would describe it more as a "rocking".

CK

 
Old 08-21-2008, 05:43 PM   #8
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Re: Swaying when standing

Quote:
Originally Posted by cknmbbl View Post
L4A,
I about fell over when I read your post. No pun intended. I was talking to a neighbor out front this am and the rocking started. I went and stood up against a tree. I felt like a idiot. We have granite counter tops and I used to think that caused some of my issues. My husband about died because early on I thought if we replaced them I would be better. This illness has cost us a fortune. We replaced all the rugs because their patterns bothered me, we have all new ceilng fans, we added lighting changed some colors....
Thanks to everyone who replied. I hadn't noticed this before to this degree and didn't know if it meant something else was going on. And yes, I would describe it more as a "rocking".

CK
CK,

LOL!! Your comment about falling over when reading my post gave me my first good laugh for the day!! I know what you mean about leaning against the tree. I either put my arm through my husband's arm or if he's not around then I just say "I gotta sit down!" My neighbors are very aware of what's up with me so they understand completely. I still feel like a freak, but they don't seem to mind putting up with me... I find that having finally decided to be honest with everyone about my situation takes a lot of the social pressure off. I was at the park a few weeks ago with a girlfriend and our kids. A bee flew by me and I freaked--screamed, flailed my arms, etc. She was like, "Holy cow! What's wrong! Are you having a dizzy spell??" And all I could do was laugh!!!

Anyway, I went to the oral surgeon today and he said that I am not a candidate for surgery (good!) and I'm not even a candidate for splints (which I think is a good thing!) but he recommended a hard plastic bite plate to be worn at night to keep me from clenching my jaw. In addition he wants me to try a mild muscle relaxant since he thinks my problems are a combination of bad jaw alignment, inability to cope with anxiety and stress, and tight muscles that never relax--even at night. He said there is no direct connection between dizziness and TMJ.

So, I have to wait until my husband has a decent stretch of days where he is home at night before I'm going to try the muscle relaxant. Hopefully I will get in next week to have the bite plate made.

I know what you mean about the money spent. For us it has been the medical bills for the last few years. Big money when seeing all these specialists and having all these tests run. My husband never even meets his deductible!!! (Guess I should be thankful for that!)

I saw your other post about how your days go. I wish I had had more than one kid so they could entertain each other sometimes! It's hard feeling like this and being my son's only playmate for days on end. We do a lot of reading.

L4A

 
Old 08-21-2008, 06:39 PM   #9
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Re: Swaying when standing

L4A,
Good to hear about your appt. I think that is really good news. I'm anxious to know if either of those things provide any relief. I tried the mouth guard to no avail. My husband uses one every night. He swears by it. The dog has chewed it twice and he has replaced it both times at close to $500 a pop. I would think it is true that your muscles never relax. I don't think mine ever do. I'm not sure about a relaxant, I'm not sure I'd be able to lift my head off a pillow. I feel so weak at times already. Please let me know how it goes.
My old neighbor, your new neighbor sent us a big thing of pidillo(?) dogs today. I felt too yuck to make them. Thats what makes me crazy. How hard is it to make a hotdog?
When this started my youngest was in preschool. I can't tell you how relieved I was when she started full day 1st grade. It was a nightmare caring for her up until that point. I have said that I would be sunk if I only had one child. Having several they entertain themselves if needed and can bring me drinks or food when I am on my deathbed. I know that I am very blessed dispite this 3 yr nightmare!
How do you explain your "illness" to people? I have tried and it sound like I am mentally unstable. I am half the time, but they don't need to know that. LOL
CK

 
Old 08-22-2008, 06:06 AM   #10
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Re: Swaying when standing

Good morning,

I went to the chiropractor yesterday and it really seemed to help. My head feels better, and the dizziness isn't as bad, either. You all may want to try it if you can and you haven't yet, it may help!

I've had to tell people about how I feel since I work full time and haven't always been able to make it through the day. Thankfully, I can work from home from time to time. My boss is understanding and sympathetic. I've found that people tend to understand when you tell them you are dizzy. I've had to cancel on several events but nobody has held it against me. My mother talks about me and likes telling me all her stories about others who have felt similarly. I don't think anyone thinks I am crazy, at least they're kind enough not to tell me if they do!

willholl

 
Old 08-22-2008, 07:17 AM   #11
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lookng4answrs HB User
Re: Swaying when standing

Quote:
Originally Posted by cknmbbl View Post
L4A,
Good to hear about your appt. I think that is really good news. I'm anxious to know if either of those things provide any relief. I tried the mouth guard to no avail. My husband uses one every night. He swears by it. The dog has chewed it twice and he has replaced it both times at close to $500 a pop. I would think it is true that your muscles never relax. I don't think mine ever do. I'm not sure about a relaxant, I'm not sure I'd be able to lift my head off a pillow. I feel so weak at times already. Please let me know how it goes.
My old neighbor, your new neighbor sent us a big thing of pidillo(?) dogs today. I felt too yuck to make them. Thats what makes me crazy. How hard is it to make a hotdog?
When this started my youngest was in preschool. I can't tell you how relieved I was when she started full day 1st grade. It was a nightmare caring for her up until that point. I have said that I would be sunk if I only had one child. Having several they entertain themselves if needed and can bring me drinks or food when I am on my deathbed. I know that I am very blessed dispite this 3 yr nightmare!
How do you explain your "illness" to people? I have tried and it sound like I am mentally unstable. I am half the time, but they don't need to know that. LOL
CK
Man, people up here are really into those Portillo hotdogs!!! You should see that place at lunchtime. They actually have police directing traffic into and out of the restaurant because it is so nuts. I haven't tried them yet--I have to eat gluten free but I should look and see if they're safe for me.

I do what willholl said--I just tell people I am suffering right now from some kind of disorder that makes me feel dizzy and off balance all the time. I usually say that the doctors think it is some variant of migraine. I don't tell everyone, just people who know me pretty well (neighbors, church members etc). Everyone is very understanding and they tell me about their dizzy episodes from the past, or their migraine headaches or whatever.

L4A

 
Old 09-01-2008, 08:27 PM   #12
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Unhappy Re: Swaying when standing

woah i can't believe I found someone who has what I've been experiencing, I've been dizzy for 3 months, it's just this sort of vague imbalance all the time and it's horrible! I close my eyes and try to stand up straight and i just rock back and forth, side to side, verrrrry strange. It goes away though when I ride in a car, get on a bike, any type of motion knocks it right out, but I stand still, or lay down and it comes back. I also have a REALLY sore neck, upper back, jaw clicking, stuffed (full) ears, and pressure in the sinus area. Have any of you found any answers?

Alright a little info,
I'm only 21 years old, never had ANY health problems, I'm a very active person, have been my whole life, all the sudden in May this stuff hit and hasn't gone away.

Long story short i've seen 23 people over the past 3 months for this including numerous MD's DO's, Chiropractors, Massage Therapists, Physical therapy, saw a neurologist, and an ENT. The ENT didn't test the inner ear though, i'm going to go see a new ENT soon, and I'm going to go see a TMJ specialist (any TMJ people out there that can relate to any of this?) the neurologist said the dizziness I describe sounds real characteristic of an inner ear problem. Any way the only thing that seems to help a little bit is some massage. I can't get a straight answer out of any of the doctors, they all seem so puzzled by me. The chiropractic doesn't help really, and neither do meds, the docs have tried putting me on valium, prednisone, xanax, flexiril, immitrex, none of that stuff will kick it out, not to mention they made me feel a little crazy.

Anyway, my thoughts are that maybe this was set off by a lot of dental work last year? I had 14 teeth filled over 3 months (they didn't need to be filled, yeah i got ripped off and taken advantage of by a dental office, another long story) Either that or I got some whiplash syndrome that won't go away from doing massive forward loops windsurfing...... I really don't know!

I had MRI of head, neck, chest, x ray of back, neck, blood work, and Spinal tap (OUCH) all came out fine. The only thing that isn't fine is the persistence of these symptoms.....arghhhh... just wondering if anyone out there has been or is on the same page as me.... thank you!

 
Old 09-01-2008, 08:59 PM   #13
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Re: Swaying when standing

Derekus20, such a shame, but it seems you have a classic case of migraine my friend. Your symptoms are classic of it. The rocking, swaying, and this seemingly going away when you are in motion is classic of this. This also fits another condition called Mal De Debarquement syndrome, and if your symptoms came on after a LONG bout of travel (immediately upon debarking a plane, boat or really long car ride), it COULD be Mdds, but this mostly hits women in their 40's after a cruise. I had the exact same "rocking" as you, which improved when moving. This completely went away with migraine preventatives. I still have a LOT of other symptoms that have not gone away yet, but the rocking stopped on the meds. Thought you might want to know that. Find a good neuro-otologist. I think he will agree with me. Sorry you got hit with this so young. But sounds like you have a mild-moderate case. Mine is SEVERE and has been going on for 8 straight months now. VERY debilitating so I understand completely. I think if you get on a good migraine preventative, your symptoms will be history.

Rich

 
Old 09-02-2008, 05:53 AM   #14
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Re: Swaying when standing

Related question to all - do you guys find that when you sit or lie very still, you feel like you are moving? I've recently started feeling this especially when I go to bed (which would require stillness.) My body starts feeling like it is tingling and then if my eyes are closed, I start to get dizzy! Can anyone relate?

 
Old 09-02-2008, 06:51 AM   #15
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Re: Swaying when standing

BC,
Yes I have that. It's awful. When laying on the bed it feels like someone is kicking it. Its hard to tell if it's really happening or just me! (just me)

CK

 
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