Story about Syringomyelia .

My living nightmare

Dec 2, 2


2nd October 2012 my life changed unexpectedly for the worst. I went to work as normal that day. I was due to go to an exercise class in the evening but today despite how many painkillers I took my headache and stiffness in my neck wouldn't go. When I got home I told my boyfriend I would go anyway and see how I felt, I could always sit out if need be. 

Half way through the exercise class I started getting tunnel vision and pain behind the eyes followed by a constant muscle spasm in one of my eye lids. One of the peoppeople I was partnered up with said all the colour had drained from my face and that I take a rest. So I did for ten minutes with a drink and felt better.  I rejoined in and after a couple of mins I got the tunnel vision back and tense pain behind eyes. All I remember was her saying that I really didn't look well. I fell unconscious and apparently fell completely backwards like a skittle not even bending at the knees. I was rushed to hospital on a spinal board. 

After 48hrs on a spinal board and having the docs have to do everything was a scary experience as well as I had never spent any time in hospital overnight. I was kept in for a total of ten days and after numerous scans of all different types and a lumbar puncture they diagnosed me with Syringomyelia 2 spinal cysts. 

After months of hospital visits and scans I was told that an operation was not an option as it was too dangerous and the risks would outweigh the benefits. Especially as the cysts are pushing on nerves within the spinal cord. Basically I have just got to be monitored regularly and just try to keep the pain under control.... 

Three years on and I can only walk with crutches around the house and have to use a wheelchair any further than that. The pain gets too bad and I also recently was diagnosed with Pots syndrome.  This means the heart rate is too fast and blood pressure is too low and the imbalance causes me to blackout regularly. I get days where I am bedbound as the pain is too much that I can't even move. I get loss of sensation in arms and legs randomly at times. I suffer with the most horrible migraines, muscle spasms throughout the body. Most days I just feel physically exhausted and just don't have the energy to do anything. 

After this happened I hit major depression and am now on antidepressants. My life literally changed overnight and it was going to be easy to adjust. Gradually I have learnt to take each day as it comes rather than lookin at the bigger picture and try to take positives out of each day. 

I am happy to help anyone that is going through the same thing and just want to feel like they are not alone. 

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