"FND Symptoms are poorly understood and can be debilitating". – Dr. Jon Stone
SeizuresI have daily seizures, some days are better than others. I have a mixture of tonic-clonic seizures which are your classic unconscious convulsions.
I then have myoclonic seizures which are involuntary jerks; these are usually in my right arm and because of my hypermobilty it can cause me to sublux or dislocate my shoulder, sometimes the force has even knocked me backwards. Sometimes I get the myoclonic seizures in my whole body.
I also have absence seizures which are brief losses of consciousness and they just look like day dreaming moments.
After a seizure I become what is referred to as 'postictal' which is the altered state of consciousness post seizure. Sometime this can last anywhere from a few minutes to several hours. In this time I'm confused, I have speech difficulties, disorientated, and I can experience nausea and develop a headache or a migraine.
Post tonic-clonic seizure I am very weak and I need help with simple tasks like walking, drinking, taking medication etc.
I can also go into rigid muscle spasm which is very painful.
I can sometimes go into what is referred to as 'status seizures'. or me this presents as an unconscious state of back-to-back tonic-clonic and myoclonic seizures which can last for quite some time and I usually need medication to bring me out of these episodes.
Bladder and bowel problemsAnother really embarrassing symptoms for me as a young person is bladder issues. I have incontinence and a leaky bladder, partly this is because the brain signals between my bladder and brain don't work and my HSD also doesn't help. I have urinary urgency as my brain does't get told it's full until it's really full so wen I need a week I NEED a wee! But because of my poor mobility often I can't get to the toilet in time so I have to wear incontinence pads. As well as this I also go into urine retention. I have frequent infection including UTI's.
I also have digestive issues again because my brain and digestive stutter don't "communicate" well with each other.
"These disorders cause an impairment in quality of life that is similar to, and in some aspects worse than, that experienced by patients with Parkinson’s disease or MS." - FND Hope
FND is really unpredictable illness to live with. I can't predict even one minute to the next. One moment I can be fine an the next I could be on the floor or unconscious having a seizure. I can find myself going into spasm unable to self medicate or hold a cup or be unable to communicate or be curled up in a ball crying in pain.