Rare Disease Day - 29th February 2012
February 24th 2012 06:28
In light of the upcoming day and my own struggle with a rare disease, this is my story.
In 2008, I was living away from home, often on short haul flights to go back home and see my family. Every few months I was flying back and forth. I also went on a cruise which had to be one of the worst 4 hours of my life. I was glad it was over when it finished but what I didn't know was that it was not over...it was far from over.
Thus began my journey with dizziness, or as I put it the 24/7 rocking sensation which would take over my life. Fatigue, nausea, blurred vision, ear fullness, ringing in the ears, the ability to physically see myself rocking when I stood still in front of a mirror, anxiety and the small glimmer of hope that would come from driving when things felt more normal. The car's motion helped my own motion to calm down.
I went to the doctor, getting blood tests and CT scans. Nothing. Then followed the Ear Nose Throat Specialist (ENT) who also found nothing. All the while I felt like I was walking on a moving surface, trying to figure out why I felt like I did while maintaining my part-time study and full-time job. I thought I was losing it, with the rocking came the intense anxiety. It felt like I was always rocking, I tried to maintain my balance with the world going by in a haze. My limbs felt numb, the doctor told me all of my body could not feel numb, it was impossible. Yet, due to the anxiety as I worked out later, it did. During periods of greatest anxiety, my face and head felt numb too, I thought I was losing it.
I felt disassociated from the world around me, I would sit on the bus coming back from work and feel completely different and alone from the world around me. It was a constant battle going to work, but I did, though I was always exhausted mentally and physically by the end of each day.
Eventually came the referral to a neurologist, I had to wait months to be seen. In the mean time my doctor had prescribed Serc, I felt it didn't really help but it helped to take the edge off at times. I kept taking it in the hopes it would end the suffering.
One day I woke up and it was all gone, I was euphoric, my vision was sharper, the rocking was gone. I spent a blissful day at the beach, unburdened. That night I woke with vertigo, culminating in a 2am visit to the ER. I was given Stemetil, though my stomach was much too used to the motion by then to feel nausea and sent home. No answers, though I did receive a referral to see a neurologist, much faster than my doctor's referral as it came from the hospital itself. Just days later I was seen, all testing done by the neurologist was normal again.
10 days after the initial attack I woke with vertigo again. Another trip to the ER which ended up being a full day. I had another CT with contrast this time, and spent the rest of the day in hospital waiting for two neurologists to look at my results. I was terrified something would be found despite having had a clear CT before, but by this stage I was sure I had something akin to a brain tumour. The results came back clear and I was sent home. However I had another referral, this time to see a neuro-otologist, Dr Halmagyi at the Prince Alfred Hospital in Sydney. I also had an MRI appointment and balance tests completed.
The MRI was quite terrifying for someone with some claustrophobia but I got through it. The balance tests were also difficult and caused more dizziness but at least it was for a good cause. Dr Halmagyi did some more tests, all of which came back normal, looked at my MRI which was also normal and finally said the words I'd been waiting for...a diagnosis.
The diagnosis of MDDS (Mal de Debarquement Syndrome) did not distress me, in fact it gave validation that I wasn't going insane, it gave me a sense of relief that I had finally received a diagnosis (and that diagnosis was not a brain tumour!). I remember the day and moment clearly - 9 June 2010, more than two years after the symptoms had started.
MDDS can best be described as on the www.mdds.org.uk website:
Mal de Debarquement Syndrome (or MdDS) is an imbalance or rocking/swaying sensation often both "felt" and "seen" by the sufferer that occurs after exposure to motion (most commonly after a sea cruise or a flight). Although other forms of travel have been known to trigger it.
After alighting or "debarking" (debarquement) the traveller continues to feel "all at sea", unable to get their land legs back. Although most travellers can identify with this feeling and do actually experience it temporarily after disembarking, unfortunately in the case of MdDS sufferers it can persist for many weeks, months, even years afterwards.
The symptoms are with you constantly, they never leave, nor can they be alleviated by any anti-motion sickness drugs (eg Stemetil, Serc etc)
"Like trying to constantly walk on a mattress or trampoline" is a good description of the main symptom, which is usually most pronounced when the patient is sitting still; in fact, the sensations are usually minimized by actual motion, for example driving.
Then started the period of trying various medications to see which would work. I tried two different ones to no avail, before being started on a third, Sibelium, a migraine medication.
Two months down the track something had finally worked, my dizzy days were few and far between and I had more, as I termed them, good days to bad days.
I've had one vertigo attack since which was a few months ago, but it had been two years in between and if I have to put up with a few hours of vertigo spaced years apart then that's better than the constant motion prior.
The only problem is some slight weight gain as a side effect of the medication, now instead of being a little too skinny I am more 'normal'. Weighing up, pun intended, the benefits of the medication I am prepared to deal with a little weight gain. The lifestyle changes associated with my condition would have caused some slight weight gain also.
I still fly regularly and in a few weeks am doing a long-haul flight to Europe. Obviously as an MDDS sufferer this causes some anxiety but I can't let that stop me and I will fight to have a normal life, including travel, despite MDDS.
Rare diseases, and diseases such as MDDS can be silent diseases, the only person who knows is the sufferer and that can be a lonely journey when on the outside, everything appears fine.
MDDS thankfully is not a death sentence. While there is no cure, symptoms can sometimes resolve themselves in patients and when the day comes that I am no longer medicated, I will see if my own symptoms have resolved themselves.
Reach out to others on Rare Disease Day and help support sufferers!
In 2008, I was living away from home, often on short haul flights to go back home and see my family. Every few months I was flying back and forth. I also went on a cruise which had to be one of the worst 4 hours of my life. I was glad it was over when it finished but what I didn't know was that it was not over...it was far from over.
Thus began my journey with dizziness, or as I put it the 24/7 rocking sensation which would take over my life. Fatigue, nausea, blurred vision, ear fullness, ringing in the ears, the ability to physically see myself rocking when I stood still in front of a mirror, anxiety and the small glimmer of hope that would come from driving when things felt more normal. The car's motion helped my own motion to calm down.
I went to the doctor, getting blood tests and CT scans. Nothing. Then followed the Ear Nose Throat Specialist (ENT) who also found nothing. All the while I felt like I was walking on a moving surface, trying to figure out why I felt like I did while maintaining my part-time study and full-time job. I thought I was losing it, with the rocking came the intense anxiety. It felt like I was always rocking, I tried to maintain my balance with the world going by in a haze. My limbs felt numb, the doctor told me all of my body could not feel numb, it was impossible. Yet, due to the anxiety as I worked out later, it did. During periods of greatest anxiety, my face and head felt numb too, I thought I was losing it.
I felt disassociated from the world around me, I would sit on the bus coming back from work and feel completely different and alone from the world around me. It was a constant battle going to work, but I did, though I was always exhausted mentally and physically by the end of each day.
Eventually came the referral to a neurologist, I had to wait months to be seen. In the mean time my doctor had prescribed Serc, I felt it didn't really help but it helped to take the edge off at times. I kept taking it in the hopes it would end the suffering.
One day I woke up and it was all gone, I was euphoric, my vision was sharper, the rocking was gone. I spent a blissful day at the beach, unburdened. That night I woke with vertigo, culminating in a 2am visit to the ER. I was given Stemetil, though my stomach was much too used to the motion by then to feel nausea and sent home. No answers, though I did receive a referral to see a neurologist, much faster than my doctor's referral as it came from the hospital itself. Just days later I was seen, all testing done by the neurologist was normal again.
10 days after the initial attack I woke with vertigo again. Another trip to the ER which ended up being a full day. I had another CT with contrast this time, and spent the rest of the day in hospital waiting for two neurologists to look at my results. I was terrified something would be found despite having had a clear CT before, but by this stage I was sure I had something akin to a brain tumour. The results came back clear and I was sent home. However I had another referral, this time to see a neuro-otologist, Dr Halmagyi at the Prince Alfred Hospital in Sydney. I also had an MRI appointment and balance tests completed.
The MRI was quite terrifying for someone with some claustrophobia but I got through it. The balance tests were also difficult and caused more dizziness but at least it was for a good cause. Dr Halmagyi did some more tests, all of which came back normal, looked at my MRI which was also normal and finally said the words I'd been waiting for...a diagnosis.
The diagnosis of MDDS (Mal de Debarquement Syndrome) did not distress me, in fact it gave validation that I wasn't going insane, it gave me a sense of relief that I had finally received a diagnosis (and that diagnosis was not a brain tumour!). I remember the day and moment clearly - 9 June 2010, more than two years after the symptoms had started.
MDDS can best be described as on the www.mdds.org.uk website:
Mal de Debarquement Syndrome (or MdDS) is an imbalance or rocking/swaying sensation often both "felt" and "seen" by the sufferer that occurs after exposure to motion (most commonly after a sea cruise or a flight). Although other forms of travel have been known to trigger it.
After alighting or "debarking" (debarquement) the traveller continues to feel "all at sea", unable to get their land legs back. Although most travellers can identify with this feeling and do actually experience it temporarily after disembarking, unfortunately in the case of MdDS sufferers it can persist for many weeks, months, even years afterwards.
The symptoms are with you constantly, they never leave, nor can they be alleviated by any anti-motion sickness drugs (eg Stemetil, Serc etc)
"Like trying to constantly walk on a mattress or trampoline" is a good description of the main symptom, which is usually most pronounced when the patient is sitting still; in fact, the sensations are usually minimized by actual motion, for example driving.
Then started the period of trying various medications to see which would work. I tried two different ones to no avail, before being started on a third, Sibelium, a migraine medication.
Two months down the track something had finally worked, my dizzy days were few and far between and I had more, as I termed them, good days to bad days.
I've had one vertigo attack since which was a few months ago, but it had been two years in between and if I have to put up with a few hours of vertigo spaced years apart then that's better than the constant motion prior.
The only problem is some slight weight gain as a side effect of the medication, now instead of being a little too skinny I am more 'normal'. Weighing up, pun intended, the benefits of the medication I am prepared to deal with a little weight gain. The lifestyle changes associated with my condition would have caused some slight weight gain also.
I still fly regularly and in a few weeks am doing a long-haul flight to Europe. Obviously as an MDDS sufferer this causes some anxiety but I can't let that stop me and I will fight to have a normal life, including travel, despite MDDS.
Rare diseases, and diseases such as MDDS can be silent diseases, the only person who knows is the sufferer and that can be a lonely journey when on the outside, everything appears fine.
MDDS thankfully is not a death sentence. While there is no cure, symptoms can sometimes resolve themselves in patients and when the day comes that I am no longer medicated, I will see if my own symptoms have resolved themselves.
Reach out to others on Rare Disease Day and help support sufferers!
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