Hey Everyone

As I have already posted on the Introduction area of the site. My name is Rhiann and this is a little about my undiagnosed condition...

I have been suffering from bad dizzy spells since the age of about 8 when I was still in primary although they have been getting worse and worse of late. I don not get the dzziness all the time but intermittingly and sometimes can go a week without having one. On the really bad days, I sometimes struggle getting out of bed and also struggle with focusing on objects as everything seems to be moving around me and I also tend to get double vision. I have noticed over the past few days that I sometimes get these 'spells' which only last a few seconds.

More recently also, my balance has also become affected with me falling all over the place and also feel that when I am standing up I feel that I am swaying back and forward, and when I am walking up and down stairs I have to hang on to something. Other symptoms experienced is tingling sensations in my legs but can also feel as if they are really heavy.

The doctors still does not what causes it, but as I also suffer from an anxiety disorder, they all tend to put it down to that but when I am anxious the dizziness feels completely different, and one day I was supposed to be going out to the theatre but was unable to go as it was one of the worst 'dizzy episodes' I had ever experienced - literally has it during the night and lasted the entire day - surely if it was anxiety it would have gone when the decision was made that I was unable to go plus the fact that I was really looking forward to seeing the play.

Just posting to see if anyone had any ideas of what it could be or anything, I am on a waiting list to see a neurologist and am also due to be going to the hospital next week for an echocardiogram and to be fitted with an ECG monitor for 24 hours. It's hard though as I finding it really hard explaining what the dizzy spells as actually like, I can't find the right words

Heart probs. can lead to dizziness - in some people. So, too, can too little hydration. I found out about it from my cardiologist following a vacation. I was on a pier and thought there was an earthquake, but... nope. Because I've nearly become impaled (by a picket), the advice my doc gave me was make sure that I am always well-hydrated and to immediately rest when I start feeling dizzy and to move slowly when changing positions. I'm also on heart med.

I am most interested to know what your testing may help your doctors determine. Please do let us know.

Well had the echocardiogram yesterday, and the doctor said it all looked normal and then was fitted with the 24-hour ECG monitor and took it back this morning but won't know the results until I go back to see the consultant. Just have to wait for an appointment to see the neurologist now

I have a horrible time with hydration, causing me to be dizzy often (mostly during the summer). I have been told that dehydration lowers blood pressure, which causes dizziness.

I'm not sure as I make sure that I drink plenty, and with that do youtend to sway back and forward and lose balance easily?

Hello,

I needed to tell you that I have several of your symptoms, and I just left the ER with a diagnosis of Thoracic Outlet Syndrome (TOS) Please check it out.

God bless.

I have been diagnosed with TOS and had a rib removed. Now I question that diagnosis. I wish I had prior to allowing them to take my rib, now I have many new symptoms as well as some of the old. If you do get diagnosed with TOS please, please get a 2nd and 3rd opinion from a TOS specialist prior to allowing them to remove any part of your body, I wish I did! I suspect that TOS is the new carpel tunnel, or ADHD, etc. "everyones getting one ya know"

I'm so sorry I didn't see this when you first posted this.

I know exactly what you are talking about. And I can tell you exactly
what vestibular rehabilation is.

You need to locate if you have not gotten help a neuro that works
with the eyes.

1. You will be sent for physical therapy were they will retrain your brain.
To learn to walk and to do other things.

2. Like to balance, walk, train your eyes to not be dizzy.

I had this training after having the problems you have for almost 50 years.
Yes I'm 51 now. I've had more than one TBI or PCS thanks to some of
these problems. But I found the doctor I mentioned and he did some of
the test you described.

I was diagnosed with a disorder and given this treatment. And I can state that it helped immensely. I really hope you return. I would like to see this
news reach you.

Donna

Hi

Thanks very much for your reply. I have an appointment with an ENT on Friday so hopefully I will get some vestibular rehabilitation. I have found some exercises, etc in some of the reading I've been doing but nothing has helped.

My parents have recently have bought a Wii Fit which I've heard some hospitals now use as part of rehabilitation too, been
practising a lot on the balance games, but absolutely no improvement!

It might sound strange too but I swear we've noticed that my dog Honey has sensed before the dizzy spells start. She'll come up and lie next to me and start crying, 10 to 15 minutes before they come on, if I'm in a different room or upstairs she'll come to wherever I am

i cant remember, have you been worked up for seizures?....there are multiple cases of dogs recognizing the pre seizure state.....good luck