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.

Has anyone ever considered Meniere's? It effects the middle ear (too much fluid I think) and can be quite debilitating. However, it is easily treated with diuretics and supplements. I have a friend with Meniere's and she had similar symptoms she takes HCTZ and some supplements and is fine. I'm most certainly not a diagnostician. Just throwing out an idea.

I'm sorry you're experiencing this. It must be just awful. Hope you find an answer soon.

Hi, you must be a bit tired of having these spells since you were 8. I'm so sympathetic with how you must feel.

I had quite a lot of dizziness when I was young, but not nearly as much as you appear to have.

The doctors said I was Iron deficient and they tended to prescribe an iron supplement.

But... okay, this is what happened many years later. I tried to kill myself and in the hospital they did a B12 test which showed that my B12 was very low. Only then nothing much was done because the police came to the hospital and took me to jail because the weeds in my front yard were too tall. It was chamisa, which is a common wild kind of sage.

It took about a year to get the information I needed about B12 replacement, and once I began giving myself shots I had such a huge change in my life that if I hadn't experienced it I would never have believed a vitamin could make that much difference.

My memory improved, the blue coloration under my nails went away, I wasn't dizzy anymore, I no longer felt like killing myself even though things were as bad as when I had tried... I didn't feel depressed... I mean, to me it was quite amazing. When I realized that my doctors hadn't gotten this simple thing taken care of for a long time before it had gotten so bad, I decided I'd do a web site so that people could get the information that their doctors might not be giving.

One doctor I had, who was really nice, said I couldn't be B12 deficient because I wasn't a vegetarian. So even though she was really nice, she was major wrong and her ignorance caused me a lot of pain.

Which reminds me, pain occurs when there's too little B12 for a long period of time. B12 is good for nerves and without it the tiny, peripheral nerves become damaged and a horrid burning sensation starts happening...

I hope things improve for you. Take a look at a good list of symptoms of low B12 and see if any others sound familiar to you.

If you do have other symptoms of low B12 get the methylcobalamin lozenges and take them. You should have significant improvement in a month or two, depending upon how much you take. If there's no improvment, then it wasn't the B12. I would bet you have improvement, though...

.

Hey everyone

A little update, been to see the neurologist, actually just received a copy of a letter he sent to my GP. He diagnosed me with Probable Peripheral Vestibular Disturbance and Upper Motor Neurone Signs with unknown cause.

He noted that my gait was not clearly ataxic and was able to walk heel to toe to a 'considerable degree' and on eye closure was able to walk in a reasonably straight line over a short distance.

Furthermore, he noted that in the upper limbs tone was normal with normal power but pathologically brisk reflexes. in lower limbs both legs were somwhat stiff more on the left than the right with brisk jerks and ankle clonus. Romberg's test was negative.

So anyway, in the letter he says I have to be sent for an MRI and a referral to the ENT Department for vestibular rehabilitation.

Can anyone understand anything in the letter?? I can't make any sense of it. Mum thinks it sounds like he does think there is something wrong but I don;t know

Are you feeling hopeful? That would be good.

I think you will see that the Rhomberg's test is sometimes related to low B12... gait and reflexes are, too. But most neurologists don't focus on vitamins.

I do hope you look at a list of vitamin B12 symptoms.