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Old 09-02-2008, 08:03 AM   #16
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Re: Swaying when standing

Derekus20, yeah, when it comes to mdds, travel helps the condition. But migraine seems more logical.

Immitrex won't work on this form of migraine. Your type of migraine is called "vestibular migraine", and the abortive agents like immitrex don't work. You need "preventatives", drugs that PREVENT you from getting migraines to begin with, to stop these symptoms. Topamax, verapamil, and effexor are the top 3. They can be taken singly, or all 3 together. Best to start with one and add one if need be. I'm 99% sure this is your problem.

Rich

 
Old 09-02-2008, 08:06 AM   #17
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Re: Swaying when standing

CK, are you on a migraine preventative yet? That all goes away with the migraine preventatives. I used to have all that. ALL 100% gone on migraine preventatives. I still have some visual issues that need to be dealt with but i've come a long way. I'm adding verapamil this week. You need to do something if you want to get better

Rich

 
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Old 09-02-2008, 08:59 AM   #18
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Re: Swaying when standing

Quote:
Originally Posted by bcrelief View Post
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?
yes I completely relate, that is what I am experiencing right now and it's very strange. i get it the worst when i try to go to bed too! not a fun sensation at all. for me it's not enough to make me fall over or anything, but just enough to always be noticeable and it's really annoying because it doesn't encourage a good nights sleep. in my opinion it's gotta be related to my stiff neck, it came on with the stiff neck and it hurts at the occipital area....

 
Old 09-02-2008, 09:04 AM   #19
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Smile Re: Swaying when standing

Hi,

AWESOME POST.

I experience all the same symptoms (and so many more), also. I rock, sway, move, ooze....EVERYTHING!

Being in motion on some level (as long as it's not in circles, up and down like elevators, or moving on things like treadmills) - feels best. Walking is difficult for me, so I prefer to move my arms and legs while I am sedentary. Example: sitting down to garden. This way, parts of me are active but I don't have to balance because I am sitting.

Being still is awkward. Standing in line, sitting in the car waiting for the light to change, trying to sleep...ICK.

I had to laugh about changing the rugs because the patterns throw you off - I am the SAME way, and mine even goes to the extent that if I walk on one surface to another (like a low carpet and then a shaggy carpet) - THAT throws me off! As does going from heels to bare feet, or going from one lighted room to another...well, you get the picture.

Regarding the dizziness/wooziness coming from the neck or tight muscles....I have recently been diagnosed with a very tight (think baseball knots) left trapezius muscle. My neuro and physical therapist believe that a lot of my "head symptoms" are caused by this problem area.

I did see a chiropractor at one point (before diagnosis), and he manipulated ("cracked") my neck a few times. That did not alleviate my symptoms, but what it did do was loosen up my next to the extent that I can now stretch and "crick" my own neck, which alleviates some tightness. If I feel tight and I *don't* crick my neck, my symptoms will increase. I haven't been to a chir in years for my neck, since.

I have been doing physical therapy for the neck-muscle tightness. This includes exercises that I do on my own, plus moist heat, electric stim, and ultra-sound done by the therapist. I have also been receiving professional massages as part of this treatment.

Since the tightness in my neck area has reduced, my headaches (which I usually have daily on some level) are not bothersome and do not occur every day.

I still experience headaches, and I still have head symptoms, but there is an improvement.

xo

Last edited by Wowwwweeee; 09-02-2008 at 09:08 AM.

 
Old 09-02-2008, 03:07 PM   #20
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Re: Swaying when standing

Wow,
As usual I can relate to everything you said. You mentioned how its about impossible to stand still. Me too. I sit to do anything I can. You talked about sitting in the car not moving? Me too. Why is that? Do you think that is the anxiety part? If its a good day and by the grace of God I am at the grocery, if there is a line, it will do me in. It's crazy. Oh, and the shoes to barefoot thing. Me too. The only time I feel half sane anymore is when I read a post like yours. Thank God for these boards.

CK

 
Old 09-02-2008, 03:30 PM   #21
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Hi cknmbbl,

First, your symptoms and sensations are REAL, so don't let anyone tell you that it's "anxiety". I firmly believe that anxiety plays a part in our symptoms - meaning, first you have symptoms, and it's the symptoms that cause the anxiety. And yes, people do experience all levels of anxiety and panic that DO include physical symptoms because of that - but if you have ever had anxiety or panic before, you know what those symptoms feel like, how they escalate, and your anxiety/panic patterns. They are not the same as how you feel with the physical "head symptoms".

Oh yes, the familiar grocery store line. Forget it. I am better with that now, but it's really a struggle sometimes to "simply stand" in line and act/feel normal.

For me, it's more than just a balance issue at this point. Spatially, places like large stores or small restroom stalls throw me "off". Some times I feel too tall or too bright (if that makes sense).

Patterns on walls, floors, ceilings throw me off.

Wearing my hair in a pony tail throws me off (the feeling of the tail on the back of my head, the motion of my hair swaying when I walk).

Swimming is fine, but once I get out of the water, my body feels too heavy, and that throws me off.

Any type of exercise or brisk motion throws me off. If I vacuum, I have to rest quietly for a few moments afterwards before going onto something else.

Taking my eye glasses off and then putting them back on throws me off.

If a picture on a wall is crooked, and I walk into the room with the crooked picture, THAT throws me off.

Day-dreaming throws me off. I have to stay focused in the "present", because if I try to relax my mind and let it wander, that makes me dizzy. And day-dreaming was one way that I used to relax.

Standing is difficult - standing in the dark is useless for me. I lose my sense of self in space. I cannot close my eyes for too long either because of that feeling. That's hard when I have get soap in my eyes in the shower.

And the shower - I shower with one shower door partly open, because the enclosed door throws my balance off. On good days, I can shave my legs standing up on the shower, otherwise, I sit on the upstairs counter and shave my legs in the sink.

If I am in a car that is slowly moving, and it stops, I have to ask if the car is still moving, or "is it me", meaning, that I sometimes cannot tell if I am moving, or if the thing next to me, by me, that I am sitting on is moving.

The wind blowing the car sets me off.

The wind blowing on me can make me woozy. Watching something bobbing or swaying in the wind makes me head feel like it is doing the same thing, and that makes me woozy.

And so it goes with me. No, you are not alone.

I hear you when you say, "It's crazy". You are as sane as I am. Although dealing with this head stuff every single day does make me feel like I could go crazy, or I am almost there. I hear you.

There were times that the one of the only things that kept me calm and grounded on the very inside was coming to this board just to remind myself that I wasn't alone. For a long time, before I found this forum, I felt very alone. I didn't find this board for a very long time (sigh).

You're okay.

Sleep well tonight, and know that I'll be thinking of you and wishing you some peace and reassurance. I'll say a prayer for you tonight, okay? xo

 
Old 09-02-2008, 05:51 PM   #22
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Re: Swaying when standing

Wow,
Thank you so much. I cried when I read your message. I feel so awful I just need to be understood. Again, all the things you listed are my life. Last year I got my hair cut a little shorter to see if that made a difference in the pony tail bob. It didn't. Now when I wear it up I put it in a clip. But how crazy is it to get your hair cut because of dizziness?
I can't thank you enough for the post. I will think of it when I lay down tonight. Please know that you and others on this board are also in my prayers.

CK

 
Old 09-02-2008, 07:25 PM   #23
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Re: Swaying when standing

CK,

My sister swears that when her bangs get too long it adds to her dizziness! You're not crazy and you're not alone!!!

L4A

 
Old 09-03-2008, 09:17 AM   #24
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Hi cknmbbl,

I'm glad that my posts here have helped you a little. Everyone needs a little encouragement now and then - sometimes this is just the place to get it.

I understand why you got your hair cut. I bet it didn't make much of a difference though. I have found that there are some things that I can do that impact my symptoms, but sometimes, there seems like there is nothing specific to either have them increase or decrease. That for me is *one* of the most frustrating aspects of dealing with my head symptoms, because there are some days when nothing really makes me feel better, and then the next day I can feel more normal without knowing what I did/didn't do to gain a feeling of normalcy.

I can tell you however, that taking care of myself physically and mentally (emotionally) as well as being less reactionary to how I feel, plays a part in how I cope. I also try to empower myself by the way I refer to my limitations - meaning that if my balance is REALLY off and I am unable to go to the store (for example), I will tell myself that I can't go "right now", or I can't go "today". I don't just say "I can't go". Sometimes this might mean that I can't go for weeks at a time, but I always refer to <whatever it is>, in the moment. I also made a point to find pleasing things that I can do, even if that means having to simply sit down and enjoy the sunshine on my face and the sounds of the birds. I always try to find something positive in my misery, and that is difficult, as you well know.

I also challenge myself. If I am dizzy in the shower, I tell myself that I will sit down on the shower floor before I cut it short, or I will walk down one more aisle in the store before I leave, or I will take a few more steps before I turn back. You get the idea. It's HARD and SCARY, but this is the fighter in me, and I know I need to find that part of me, even on my hardest days.

I won't put myself down or make excuses for why I cannot do something, or why I will not do something. I do get very, very down, but I think that is a normal reaction for anyone dealing with a limiting condition that makes you feel foreign to yourself.

And, coping doesn't happen overnight. Learning to cope is a process. I think that most people have the ability to cope, but learning to cope with something chronic takes patience, faith, attitude, and self-trust. It's hard to trust yourself when you don't feel "normal".

Unbelieable as it may sound, dealing with such a chronic condition is also a growing experience. You will be challenged physically and personnally in ways that maybe someone without a chronic condition will not. You will have your eyes opened to all the small joys in life that other people take for granted because they have no reason to soak up every good moment they experience since they have no idea what it means to treasure them so deeply as their good moments are perhaps more than ours. We KNOW what it feels like to have independence, self-confidence, control and feeling healthy taken away - so we are going to cherish is even more when we have it back, if only for a day. You will be able to put yourself in others' place easier - you just never know what someone else is silently going through. Your empathy for others' will grow, and you desire to help someone will increase because on here, you are touched by people who know what it feels like to ache, and you will want to give that to others in need. You will become wiser because now you realize that only the most important things matter, so who cares if you break a nail or don't have the highest paying job - what matters is how you physically feel, and who loves and supports your during your darkest hours - anything else that comes your way after that is icing on the cake.

I realize that not everyone feels this way. But I do, and I consider myself blessed for it.

You may want to look up an older post of mine, back when my user name was Wowwweee (less letters). It's called 'I think I have my diagnosis'. Read it carefully, and you will understand why I referenced it.

I hope your day is a nice one. xo

 
Old 09-17-2008, 03:30 PM   #25
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Re: Swaying when standing

Thanks for pointing this out. Don't know how I missed it.

You are so right. I always say I can't. Starting now I'll say "not right now".
I think my biggest problem is trusting myself. I have no confidence left. If I really listened to myself I would think that this is so much more then MAV. Do you know what I mean? How do I trust myself?

I think I appreciate the small things. It didn't take me long not to care about what sale Macys was having or that it had been more then 6 weeks that my hair got highlighted.

I really appreciate your insight. I need someone who gets it including the emotional struggle. When my symptoms change (quick spins) it does get my anxiety up and makes me freak out.

I am going to pull up your old posts now. Just so you know about 2 yrs ago I printed out a bunch of your posts and refer to them often.

Hope tomarrow is a better day for you.

CK

 
Old 09-19-2008, 03:26 AM   #26
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Re: Swaying when standing

Hi Cknmbbl and all,

Ck, how are you?

I hope some of my older posts have helped you a little. I'm glad that I can be of some support; there are days when I jump on here just to read others' stories, so I can remind myself that I am not alone and the only person dealing with this head stuff.

I see that you haven't had a moment yet to pull up my older post called I Believe I Have My Diagnosis, posted back when my user name was shorter! Take a moment to go back to that thread, and read my initial posting on it, especially towards the very end.

I hope you have some nice plans for the upcoming weekend. Plans don't always have to be "busy"; sometimes just sitting in a sunny spot listening to the birds or reading a good book can be just as fun. And there have been plenty of days when I have done just that!

I hope your day is a nice one. xo

 
Old 09-19-2008, 09:00 AM   #27
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Re: Swaying when standing

Hi Wow,
I did read the old post. I left you a message somewhere on the board. I can't remember where.

I thought it was very informative. It is a good thing to pull out and read whenever you are doubting that migraine can do this to you. For me, it was helpful to see how often that balance was a symptom. For some reason there are alot of drs that doubt this.

I am having a terrible balance day. Its like the floor is shifting and I am walking side to side. I keep telling myself that it is ok. Just rest and it will go away.

Hope you are feeling well.

CK

 
Old 09-19-2008, 03:03 PM   #28
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Re: Swaying when standing

Hi Cknmbbl,

I'm sorry you're having a rough time of it with your increased balance issues. I have DAYS upon DAYS of that myself. I also feel like I am walking side-to-side MANY times, with a deliberate pull to the right. It's unnerving, especially when I am walking all over the place, trying to keep my balance.

It's difficult to concentrate and read things when you're dealing with head symptoms, I know. I see that you referenced reading my initial thread on I Believe I Have My Diagnosis. Only, you didn't read it more carefully! That's about all I can say, so go back and re-read it so you can see what I am trying to tell you. When you are more clear-headed, take another try at reading it, okay? If you don't see what I am trying to tell you the next time you read it, I will drop the subject and hope that you find it some other time. Sometimes I have to read something more than once to make sure that I'm not missing something - I do that a lot at work to make sure that I don't make too many mistakes.

I hope your weekend is a nice one. I'll try to check back here sometime this weekend.

Last edited by Wowwwweeee; 09-19-2008 at 03:05 PM.

 
Old 09-19-2008, 06:14 PM   #29
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Re: Swaying when standing

Wow,
I told you that one of my symptoms is that I'm not as smart as I used to be. I think I finally got it!

CK

 
Old 09-19-2008, 08:30 PM   #30
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Re: Swaying when standing

Quote:
Originally Posted by derekus20 View Post
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!

I have ALSO had these dizzy/balance/falling sensations for going on 3 months now. I have seen specialists too, ent's and a neurologist. They did the eng test which is supposed to rule out inner ear, which it DID, well than what else would be causing this if it wasn't inner ear? That doesn't make sense to me. I also have tmj, and have always had migraines. Nothing has changed in my life to make this happen. My next step is to go to a vertigo clinic (even though I am not experiencing vertigo, room is not spinning). I also am feeling great while in a moving car, it's the sitting and standing that are a problem. I have also lost weight, had a loss of appetite, and been on valium and mecilizine for a long time, and while they help, doesn't take it away. I had a mri to rule out a tumor. I have been told I have abnormal sinuses, and my reg. doc explained that my abnormality shouldn't have anything to do with my symptoms.........

 
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