Dizziness diagnosed
June 12th 2010 05:42
After many visits to the GP with symptoms that only baffled them, trips to the ER, followed by ENT and neurological appointments, I have finally been given a diagnosis for the dizziness which has plagued me and changed my life during the last two years.
The diagnosis two years later was actually a relief. Being diagnosed with something is a strange thing to celebrate but the uncertainty and confusion of the last two years was much worse.
My main symptoms, and this is not an exhaustive list, are feeling like I am on a boat every day, most noticeable when I am sitting or standing still, looking in the mirror and 'seeing' myself moving from side to side when I know I am actually standing still, having to get my eyes tested several times due to blurred vision but no issue being found with my prescription, symptoms easing when I get in the car - something I attribute to the car having its own motion and kind of helping to balance out the motion I feel, feeling fatigued and my limbs feeling heavy, feeling and sometimes seeing the ground move beneath my feet as I walk, loud sounds and large crowds bothering my ears which feel full and extra sensitive to sounds but also having muffled hearing at times. These symptoms were explained many times to several GP's but I got blank looks and certainly empathy from one or two but no answers until I finally requested seeing a specialist myself.
I recently underwent another audiology test, level 1 and 2 balance tests and a brain MRI. I had previously had 2 CT scans, one with contrast and one without and an audiology test.
The MRI was probably the most terrifying experience of my life but I made it and the clear result afterwards meant I could stop that niggling worry in the back of my mind that no matter how many times I was told it was "most likely" not a tumour or some other brain issue, that some day I would find out it was. Now, that worry has been put to rest. Not that I would rush to have another MRI, it's not something I want to repeat any time soon. After the first scan, the technician had to get me out because I got upset, tears and all but I sucked it up and went back in to finish off the remainder of the scans.
I have been diagnosed with Mal de Debarquement (MdDS), a balance disorder. A rare syndrome which research has not even scratched the surface of. Knowing there is no real known cure and so little is known about this condition is a little bewildering but now that the dizziness and symptoms I deal with on a daily basis have a name, it's still a relief.
Medication has been prescribed for me to try called Stugeron. It's unavailable in Australia, the specialist explained that this is because there just isn't the market for it, rather than something being wrong with the drug, and from what I have read it is actually available as an over the counter medication in the UK.
The specialist is arranging for it to be imported, there is a pharmacy he knows of that regularly does so and then it will be sent onto me to try. I am not holding my breath that it will work but am hoping for the best that it does. I no longer take Serc, labelled as 'useless' by both neurologists I have seen, though I felt as though it was helping at times. Several days of no usage though now has not made any discernible difference so perhaps it was a bit of a placebo effect or it did genuinely help at times when I was at my dizziest.
I am having a dizzy day today and although I have Serc, I probably won't take it. I'm just going to relax and try not to think about it, willing it to go away and let me enjoy my Saturday. If not, I am quite used to lazing weekends away when I'm feeling bad so a day watching movies may not be such a bad thing. Grinning and bearing it is also another option, I do that 5 days a week when at work, so two days without the energy to keep doing it is rather a given.
The diagnosis two years later was actually a relief. Being diagnosed with something is a strange thing to celebrate but the uncertainty and confusion of the last two years was much worse.
My main symptoms, and this is not an exhaustive list, are feeling like I am on a boat every day, most noticeable when I am sitting or standing still, looking in the mirror and 'seeing' myself moving from side to side when I know I am actually standing still, having to get my eyes tested several times due to blurred vision but no issue being found with my prescription, symptoms easing when I get in the car - something I attribute to the car having its own motion and kind of helping to balance out the motion I feel, feeling fatigued and my limbs feeling heavy, feeling and sometimes seeing the ground move beneath my feet as I walk, loud sounds and large crowds bothering my ears which feel full and extra sensitive to sounds but also having muffled hearing at times. These symptoms were explained many times to several GP's but I got blank looks and certainly empathy from one or two but no answers until I finally requested seeing a specialist myself.
I recently underwent another audiology test, level 1 and 2 balance tests and a brain MRI. I had previously had 2 CT scans, one with contrast and one without and an audiology test.
The MRI was probably the most terrifying experience of my life but I made it and the clear result afterwards meant I could stop that niggling worry in the back of my mind that no matter how many times I was told it was "most likely" not a tumour or some other brain issue, that some day I would find out it was. Now, that worry has been put to rest. Not that I would rush to have another MRI, it's not something I want to repeat any time soon. After the first scan, the technician had to get me out because I got upset, tears and all but I sucked it up and went back in to finish off the remainder of the scans.
I have been diagnosed with Mal de Debarquement (MdDS), a balance disorder. A rare syndrome which research has not even scratched the surface of. Knowing there is no real known cure and so little is known about this condition is a little bewildering but now that the dizziness and symptoms I deal with on a daily basis have a name, it's still a relief.
Medication has been prescribed for me to try called Stugeron. It's unavailable in Australia, the specialist explained that this is because there just isn't the market for it, rather than something being wrong with the drug, and from what I have read it is actually available as an over the counter medication in the UK.
The specialist is arranging for it to be imported, there is a pharmacy he knows of that regularly does so and then it will be sent onto me to try. I am not holding my breath that it will work but am hoping for the best that it does. I no longer take Serc, labelled as 'useless' by both neurologists I have seen, though I felt as though it was helping at times. Several days of no usage though now has not made any discernible difference so perhaps it was a bit of a placebo effect or it did genuinely help at times when I was at my dizziest.
I am having a dizzy day today and although I have Serc, I probably won't take it. I'm just going to relax and try not to think about it, willing it to go away and let me enjoy my Saturday. If not, I am quite used to lazing weekends away when I'm feeling bad so a day watching movies may not be such a bad thing. Grinning and bearing it is also another option, I do that 5 days a week when at work, so two days without the energy to keep doing it is rather a given.
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Comment by S.L.
The Political Brief
Comment by True1
A Day in LA - Things to do in Los Angeles County
The Friendly Vegetarian
breeze
Comment by sam sall
Speech Starter
Health Matters
stugerone is a good drug it work for both central ( neural ) or perephral dizzenes ( the one caused by ear problem ) ,Its from the sam family as serc both have the same mode of action both as effective ...rarely we combine the two drugs if patient symptoms not controlled with a good dose of one of them ...
However , Mal de Debarquement patients usually don't respond to anti vertigo meds......but in the letriture they always advice to go through vestibular rehabilitation and Tai chi techneques..but it is as you said we don't have effective data about this condition....
I really wish u to get well soon....
Comment by Justicia
A Word From The Wise
Celebwise
Thanks for visiting True1. It did feel a bit like that at times. I think it was the balance tests combined with the MRI which led to the diagnosis. MdDS doesn't have a test which diagnoses it, it's a diagnosis of elimination. The tests eliminated any other causes and the neurologist diagnosed MdDs after checking my results and questioning me a bit more about the history already on my file.
Thanks for the information sam. That's very interesting. I found Serc useful, but Stemetil not and I am hoping Stugeron works but it is a bit of trial and error thing with medication for dizziness issues. I didn't respond to Stemetil, so they tried me on Serc, which did help me at times. Now Stugeron, I hope it doesn't have any strange side effects! I can only try it and see. Thanks for your wishes, I hope so too!
Comment by True1
A Day in LA - Things to do in Los Angeles County
The Friendly Vegetarian
breeze
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