Hello everyone, my name is Nadeen, I was diagnosed with FND and POTS last year after my post on the page, the treatments I recieved from the medical fields has been minimal, I had to scream for outpatients rehab due to deconditioning so bad I could hardly walk due to paralysis. I entered 8 weeks of rehab, physio, ep, ot, psyc ect I had a bit of improvement however I am still not able to do much. I saw a public cardiologist who only has tried to give me meds, that I refuse to take due to more symptoms and opted for homeopathy instead. With no supports I’ve been going on a personal spiritual journey, I do yin yoga, Meditate, read and I’m more regulated to manage my symptoms. However I am still disabled the spiritual inner work has been better than any doctor can prescribe. I also refuse to go to Emergency again due to the terrible treatments so if I have seizures ect I’ve found ways to manage better at home. My partner is now my full time carer, which means financial hardship however we have never been well off to start with.
I still have after 14 months live daily with, cognitive issues, walk and gait issues, dystonia, speech and swallowing issues, dystonia, fatigue, migraine, light and noise sensitivity, tremors, tics, neuro pain, brain pain and seizures depending on how much I do or just because my body wants too, fatigue, weakness. So my symptoms have never really stopped. I have also figured out that depending what I eat I pass out in and out for hours so I can only eat once a day and only certain foods, I’m 48kg but have been able to maintain it. I also experience tachycardia from POTS my heart rate is still quite high and impacts how long I can stand or sit, do an activity, with diet changes and homeopathy it has decreased a bit. I experience adrenaline dumps dissociative attacks aswell. Every day is a battle to talk, walk, stand or function much.