"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.
My mobility is also affected due to sensory disternbances in my legs. Basically the messages between my legs and my brain get scrambled so walking or moving can be difficult as each step is a conscious effort so I can all off-balence and it very tiring and painful so outdoors I use a wheelchair. I also use crutches.
Sometimes those messages can also cause me to get numbness in my body, usually either in my legs or down the right side of my body. I also get pin-and-needles pain in my legs which can affect my mobility.
As well as the neuropathic symptoms I have muscle weakness
I have regular falls because my legs just give way.
I've forgotten what it's like not to be in pain if I'm honest. Somedays I can just get on with my day, others days I'm in bed crying trying to distract myself.
I have all sorts of pain - nerve pain, joint pain, muscle pain etc. Sometimes it's localised to a specific area like abdominal pain or in my hips; other times it's generalised all-over pain.
Chronic pain is a symptom of my other illnesses.
The problem with FND is that the pain is that the pain signals can remain switched on in the brain so I might dislocate my knee but even when it's sorted in my brain the pain signals remain on and this can last for days, weeks, months and even years.
Again this is another illness that features across my other illnesses and it's another major symptom for me.
Brain fog is like your brain working really slow and you struggle to remember and process things. It's like if someone throws a ball at you it's going to hit you; you can see where you're looking at them but you don't know that they threw the ball til after it hits you. It's also like being drunk , like really really drunk (without the alcohol) and you have slurred speech and you forget words and get things mixed up.
As well as the brain fog I get confused a lot, or example I'll pick up a fork instead of a spoon and I struggle to follow instructions and I lack the concetration and I struggle to focus such as on conversations or in TV programmes. I'm very forgetful, I get tired, I also find it hard to complete tasks.
My speech is also affected. I often forget words or I confuse words and mix words up. I also utter and stammer on words - sometimes this is post seizure and other times it can common randomly.
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.
Like with my other symptoms above they cross over a lot with my other illnesses. I have chronic fatigue, vision problems - especially double vision, hypersensitive (especially to light so I wear tinted lenses and noise is difficult and strong smells; this is partly because my brain finds it harder to process sensory input). I also have major sleep problems, headaches and migraines.
I also get a strange sensory disturbance whereby parts of my body feel smaller or bigger than they really are which is really odd and scary.
"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.
Treatments for FND
Targeted treatments for FND in the UK are few and far between. Treatments for FND include medication, occupational therapy, physiotherapy and psychology.
I personally and am hoping to get funding to go to inpatient rehabilitation. My fight for funding for a care package continues.
As a result of my symptoms I find basic day-to-day tasks difficult to do, for example personal care, self medicating, preparing food, drinking etc.
I feel very lucky to be under the care of Professor Edwards in London who is highly regarded in the FND community and his understanding of FND is amazing and he is very understanding, supportive and sympathetic.