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Old 08-12-2010, 01:06 PM   #1
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LucasG HB UserLucasG HB User
Unsteadiness, disequilibrium, walking on trampolines : My story and How I'm coping

I posted this in another thread, but felt like It could maybe help some of us suffering from this. This is a fairly long read but might bring you some relief and help.

""
Hello! Well met, this is my 2nd post and I will try to be very explicit in order to help and hopefully bring some relief to fellow sufferers. Im a 22 yr old healthy male, smoker, easily stressed ( a work in progress ! )

I have had the exact same symptoms as you guys so I can definately relate to the feeling. These are NOT in your head they ARE real, but understanding is the best way to beat it.

Back in 08 I've had a first episode of this, went to general doc, MRI scan, clear no problem can be detected but unsteadiness persists. To be honest as this was 2 years ago I cannot exactly remember how long the symptoms lasted, had to be atleast 2 months. Eventually they DID go away, and I never tought about it ever again. Possible causes : Very stressed at the time, new place, new college, new lifestyle, etc.

Now in 2010, around exactly same time of the year, bam, symptoms are back with a vengeance. Possible causes : Extreme straining when working out with weights, intense stress levels at the time the symptoms appeared.

Symptoms that you can all probably relate to:

Feel like walking on marshmellow, a trampoline or any other unsteady surface.

Feel like your body is pulsating on the surfaces it's touching, may it be be your whole body when your laying down, or under the feet when standing.

When standing still, it seems like the body is sensing movement under the feet or receiving OR misinterpreting nerve impulses from the different balance organs, resulting in a ''ground is shifting under my feet sensation''.

Wierd feelings in one ear, like something is going on there (But as we know very hard to know what IS actually going on)

Wierd eye sensations when focusing on an object, resulting in more unsteadiness.

NO spinning going on.

Going better when :

Walking faster outside or with shoes on
Being fast asleep
Sitting down
Driving a car

Worse when :

Moving arms and head when standing without support :
Cooking, shaving, brushing teeth, washing hands, standing in a line at the store, being in a very small and restrained area, exploring new areas, and the worst has to be taking a shower.

As like everyone else here, this does not impair any of my motor skills, can walk heel to toe and do any other type of activity, just feeling awful doing them.


Progress:

1st occurence: Appeared after a cold, could be related and the cold infected one of my ears resulting in symptoms. Symptoms faded away on their own after 2 months or so, have no recollection if the symptoms faded gradually or all of a sudden. Balance was seemless and no wierd feelings whatsoever.

2nd occurence: Symptoms started on July 29th 2010 all of a sudden. The very next day had cold sweats, legs shaking like twigs, almost fainting, unable to eat. Thankfully these dissapeared in a 24hour period. Now 2 weeks later on the 12 of august, can safely say the symptoms have diminished by a good 30%. The unsteadiness spikes when standing seems less severed. This could be attributed to either an ear infection clearing up (2 to 4 weeks usually) or the brain compensating and reducing the symptoms the best it can.

Effects on the mind:

Very intense mental distress.
Insecurity.
Fear of being unable to attain goals.
Fear of moving around to avoid feeling the symptoms.
Pain in legs, back, shoulders, neck, due to the body seemingly trying to "keep balance" even tho we are perfectly stable.
Panicking in crowded areas.
Tension headaches from either symptoms or the psychological backlash of said symptoms.

How to cope, what you can do (This is based on my personnal experience, I'm writing this in the hopes of helping and bringing some hope to fellow sufferers out there):

Get tested: These symptoms may be an indication of something bigger going on in your body. Do not panic, but be responsible and get to the doctor office to be safe. Do not get depressed if nothing is found but be reassured instead ! Refer to top of post to get some help if you have a hard time describing your symptoms precisely.

DO NOT stop daily activities: This is by far the most important point, as stopping activity will cause an avalanche effect and can bring you into depression. Also, staying active, if anything, will give the brain some mileage in order to start compensating for whatever is going on and making you feel normal.

Accept the situation: Right now, this is WHAT you got, DEAL with it. It seems very hard at first, but the more you do it the better it will get.

Embrace the unsteadiness: Think of it as a challenge. We have challenges throughout our lives, and we have dealt with them and succeeded time and time again. Right now, you are unsteady. But in a while, you will get better!

Talk: If you feel down, talk. The forums here are a great way to start, your family and most trusted friends. Be aware they might not UNDERSTAND the symptoms because they are hard to imagine for someone that never had them. But just talking to someone will help you feel you are not alone and will beat this.

Understand: These symptoms are not DISABLING you from going on your daily life. Yes, everything is harder, but still possible. Get relief from that sensation and know this is a fact. What I did is imagine myself this: Right now, I'm living life on HARD mode. In a while, I will look back on myself and be extremely proud I beat it.

Keep your mood up: Try not beating yourself down, we all know these symptoms cause an increased fatigued state, pains, and a myriad of other feelings, but they are just that, feelings. Smile and go on with your routine.

Keep in mind I am still struggling with these symptoms on a daily basis, now going on my 3rd week back with symptoms. Yes it's hard and i'm still very much struggling, but I wrote all this in the hopes of helping and bringing some relief to someone, even if its only one person, just know you are not alone. Yes you may ask yourself "why me?", but do not stop giving up. The human body is an amazing machine and it won't let you down.

 
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Old 08-19-2010, 01:54 PM   #2
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Jess47 HB User
Re: Unsteadiness, disequilibrium, walking on trampolines : My story and How I'm copin

thank you for this advice. it is all right on.

 
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Old 01-27-2011, 06:27 AM   #3
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Catkin HB UserCatkin HB UserCatkin HB User
Re: Unsteadiness, disequilibrium, walking on trampolines : My story and How I'm copin

I jus came across this way of describing it. I have had this since I was about 8 because of fibromyalgia. (Ive only just found out that its fibro). I've never really been able to describe it right, I would say it feels like my hips are jutting out when I walk. I think thats maybe because of my body trying to balance me up as (like you've mentioned) it feels like im not walking on a steady ground and that im sort of bouncing/ unsteady.

Thanks showing me that others have the same thing going on!

Catkin x (by the way i'm 22 aswell

 
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Old 04-27-2011, 08:40 AM   #4
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Re: Unsteadiness, disequilibrium, walking on trampolines : My story and How I'm copin

Thank you for sharing your story. When I came across your thread, I felt like someone finally understood what I have been expericing for 4 months now.
I'm a 29 year old female who has experienced chronic unsteadiness almost every day for 4 months. I have never experienced anything like this before and it's very scary.
I have gone to the dr. so many times and I feel like I'm going crazy trying to figure out what is causing this sensation. I've had my ears checked with a balance study, multiple blood tests, cardiac 30 day monitor, and still no luck. My doctors think it's anxiety. I have had panic attacks when this first started, but those have stopped for the most part...I have had a very hard time with this. Would love to hear back from any one who's also experiencing this problem...

 
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Old 10-02-2011, 06:37 AM   #5
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Re: Unsteadiness, disequilibrium, walking on trampolines : My story and How I'm copin

Ive been off the trampoline for 3 days now! I was walking around on a trampoline for 2 months!!! My doc put me on antibiotics (augmentin) for a possible sinus issue. Im so happy to be free of this! God! So happy! I feel as though my disequilibrium or vertigo was related to a sinus issue, I just didnt have any other symptoms. I would recommend a broad spectrum antibiotic to anyone battling something like chronic dizziness. It's worth it. Hope this helps

 
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Old 03-02-2012, 09:23 AM   #6
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dyyzzee HB User
Re: Unsteadiness, disequilibrium, walking on trampolines : My story and How I'm copin

I've been dealing with this disequilibrium and tinnitus problem since November, 2011 (almost 4 months now) and I'll simply post what I've been finding.

Let me start out first with a little explanation. I work at a computer all day and I started having severe muscle tension in my neck and shoulders already several years ago. At times I have tension headaches and I frequently feel like I have bones out of place in my neck and shoulders. I've went to many chiropractors and massage therapists and they all find things wrong but they say I don't have anything major wrong. However, I find that at this point I feel like I could use chiropractic work almost every day since I have tension (and at times pain) in the shoulders and neck, extending into my jaws and temples.

Recently a massage therapist told me that I have a problem in my TMJ, specifically on the right side. Things really started to click for me. My disequilibrium and tinnitus started right after a visit to the dentist in November. I failed to really make this connection until this massage therapist noticed this problem.

I should mention that I've been to many doctors including two different ENT's, had an MRI of the brain, tried a variety of exercise and stretching, and it seemed that nothing was helping more than offering temporary relief of the tension.

I've recently decided to tackle this problem first by going to a professional who does Rolfing (structural integration) work. I'm also actively working on having better posture and relaxing my jaw during the daytime, as well as taking brisk walks (with correct posture) which helps somewhat to alleviate the muscle tension in my back and shoulders. I'm also going to start seeing a very good massage therapist who tells me that she often has to start working on other areas (rather than the affected area) since these type of problems often come from tension and alignment issues lower down, specifically in the pelvic area.

I had my first session with a Rolf practitioner and I've noticed a difference already, although it might be a little too early to really know for sure how much difference it will make. One thing is obvious though - my body has some kind of physical structure/alignment problem and that's why the chiropractic and massage work no longer helps or provides only temporary relief. Rolfing aims to resolve the underlying alignment problems that cause chiropractic and massage work to be ineffective.

The Rolf practitioner I'm seeing has warned me not to try to correct my posture using muscles since posture is really the result of physical alignment. He argues that using muscles to create a certain posture can only have a bad result since posture is supposed to be the result of the alignment of your bones and the fascia that holds your body together. As I understand him, it's OK to correct your posture as long as you are not using muscles to pull yourself into a new posture. The muscles need to be relaxed in your new posture.

I can verify that my tinnitus has been getting less and less while I actively work on relieving muscles tension. Even a hot bath in epsom salts will normally lower the volume of the ringing but it does not seem to have a significant impact on the disequilibrium. Since the disequilibrium came first (the tinnitus came two weeks later) I expect the tinnitus will likely leave first followed by the disequilibrium.

I did go see a dentist who is a TMJ expert and he confirmed that my disequilibrium and tinnitus could be the result of tension and inflammation around the ear(s). He did not find a real TMJ problem but he does have a program where they use several different kinds of therapy to relieve trigger points in the neck and shoulders in an effort to relieve the tension in the jaws. Because of the high cost of this program, and because I feel it does not address the underlying structural/alignment issues, I've chosen not to use his program but rather to seek help from the Rolf practitioner as well as from the best chiropractors and massage therapists that I can find.

I'm also going to see an eye doctor that specializes in visual therapy. One of the chiropractors I went to recently tells me that I have a visual tracking problem (one eye tracks slower than the other) that could be causing a variety of problems including my slow reading (I read at about 120 words per minute). I do not know yet if this is a contributing factor in my tension and disequilibrium but I suspect it could be.

I'll try to remember to post back here with more details about how all of the different therapies work. I do know that I've tried a variety of exercise and have modified my diet to the healthiest possible and none of that has made any difference. I've also taken a variety of vitamin, mineral, and herbal supplements aimed at a large variety of of different problems and none of that seems to have had any negative or positive affect on my disequilibrium.

 
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Old 09-12-2012, 01:48 PM   #7
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loneman HB User
Re: Unsteadiness, disequilibrium, walking on trampolines : My story and How I'm copin

Thanks for this post. I've been dealing with similar issues on and off for over 3 years now and I know exactly what you're dealing with. The past couple of days have been unbearable. I'm just constantly floating and feel like my upper body is pulling ahead of my legs, especially when I walk slowly. Add a couple of stressful days at work this week along with not getting more than 4-5 hours of sleep over the past few nights and it's hell. I also work on a computer all day and I do feel it's a lot worse at the end of the day. I'm going back to my neurologist next week - she initially sent me to PT for balance training, which didn't do much for me. I can perform every exercise with no problems and physically I feel fine. I do think it is some kind of a visual thing - the unsteadiness I experience is triggered by certain movements around me - walking slowly in a crowd is the worst for me as I get totally disoriented by things moving around me. The worst part is it's hard to tell what's real and what's not at this point. Anxiety due to not being able to walk comfortably and expecting to fall every second triggers a whole bunch of other things and it snowballs from there.
All my tests (blood, nerves/reflexes, brain MRI to name a few) have been normal. I just have to keep reminding myself. It's a struggle for sure.

 
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