“FND CAN BE MORE DANGEROUS”
That’s what the Autonomic consultant told me at the National Hospital for Neurology and Neurosurgery. I have a diagnosis of Vasovagal Syncope and POTS both of which are caused by autonomic dysfunction, both of which give me some warning before I lose consciousness giving me the opportunity to get myself down safely. The FND collapses are very sudden with no warning, therefore I injure myself quite badly at times an often sport lumps and bruises over my face and body.
A question we keep asking is WHY DOES MY BRAIN DO THIS?
In my case, the brain senses a minor change in blood pressure or heart rate, up or down, and has learned that sometimes this may make me pass out so what the hell, why wait for that moment, let’s do it now so it inappropriately signals an immediate loss of consciousness. Another thing my brain has started to do is to forget to tell me to breathe. I have been diagnosed with a small amount of Obstructive Sleep Apnoea(OSA) but my brain has decided to mimic that too and of all the episodes of sleep apnoea I have each night, the tests showed that around 18% of them are OSA but 81% are being caused by CENTRAL Sleep Apnoea (CSA), the Central/Autonomic Nervous System is forgetting to tell my body to breathe!!! It still all sounds so bizarre.
One problem is of course that my FND collapses are causing internal injuries too. I have left sided weakness so repeatedly fall to the left and in particular, on my kidney area. This combined with the vagus nerve problems, I now have early stage kidney failure and autonomic neuropathy of the bladder. I can no longer naturally wee and despite surgery to try to correct this, I have to self catheterise 7 times a day. The bladder situation is humiliating and embarrassing at times and this whole condition is painful, harrowing both physically and mentally. I look ok on the outside (if you can’t see any bruises) but on the inside I am a mess. I rarely go out because of my illnesses and never on my own.
The next question is WELL WHO IS GOING TO HELP ME?
The consultant told me yesterday that there is no cure for the autonomic side. There is not one dr in the whole of the U.K. and probably the world who looks at and deals with you as a whole person. The vagus nerve runs from the brain and branches out to the heart, to the digestive tract and down into the groin with the potential to wreak havoc in all of these areas if it feels like it yet not one dr can deal with all of the autonomic problems in one.
Because so little is understood about FND, it makes it very difficult to treat. A few years ago MS ( Multiple Sclerosis) was considered an FND. It was only through a lot of research into the causes and treatments that the FUNCTIONAL part was able to be dropped. Much more research is needed into so many different areas of FND because only then will we be able to get effective treatment. At present the only treatment for FND is physiotherapy, CBT ( cognitive behaviour therapy) or psychotherapy. No doubt some people will find these things beneficial but unfortunately many find these approaches severely lacking.
WE CAN HELP, maybe not with medical treatments but with support, empathy and a relaxed atmosphere where you and your carers / families can feel at ease with no one looking or judging. If you are able, please join us at our next group meeting on 20th August.