Hello everyone you beautiful people. I know I’ve been promising to update you all, so Thank you for being so patient with me!
SO… I HAVE NEWS! When I went to have tests in the hospital and have my EEG weekend thing where I was made to look like Davros, I had examples of all of my different ‘episodes’. I have honestly never felt happier to have a seizure or 6 in my life. Finally, on camera, in front of doctors, hooked to machines and in hospital IT HAPPENED. I HAD EVIDENCE.
In all honesty I would have been happy with just giving them the evidence I did. But then the doctors came to see me and gave me something I thought I’d never get. ANSWERS. As well as my POTSie Blackouts/ Vasovagal Syncope and all my other conditions, I have a complex form of Non Epileptic Attack Disorder which causes me to have 4 different forms of seizures. Before you Google it (which I know some will) please understand it is not all in my head. Like all my other conditions, NEAD is real, and very much something that is incurable, and life changing. HOWEVER, the triggers of my NEAD seizures are not only physical and autonomic, but some are psychological… i.e. Extreme happiness, extreme relaxation, Stress, anxiety, sadness etc. The treatment is not straightforward but basically it’s a combination of finding the physical triggers and avoiding said physical triggers, working closely with my syncope team to try and work on managing my autonomic issues, and possibling having CBT alongside Talking Therapy for the psychological triggers. My most exciting news to tell you all is that as of today I am a part of a very cool Research Trial, which will not only help me manage my condition, and hopefully control my seizures, but also help the doctors to find out the extent of my conditions, and help others like myself in the future!!! The more the doctors can learn, the better! My current conditions have now been re-confirmed, and the severities changed. Although, what hasnt changed is that my conditions are chronic and severe and incurable. I can finally tell you all this, after years of not knowing what’s happening, years of tests and hospital trips.
I have Ehlers Danlos Type 3/ hyper mobility Syndrome, POTS, Vasovagal Syncope, Fibromyalgia, PCOS, IBS + NEAD. I also have suspected Sensory Processing Disorder (which was somehow missed in my childhood?) and suspected OCD.
The battle isn’t over.
I am still undergoing tests to confirm some other conditions. So its all still under investigation.
Don’t get me wrong, I’ve not got all the answers to all my problems, but compare this to where I was last year and the year before…? I’ll take this as progress. Most of doctors have said that I have “Lana Syndrome” as an umbrella term for it all ;)- Typical Huh?
Please dont mistake my happiness for my diagnosis as being happy im ill. I would do anything to be normal amd free from illness. I’m just happy that theres names to my illnesses and I have proof that its not all in my head like many medical people,relatives and so called friends tried to tell me. I have proof im not a hypochondriac, I have proof It’s not in my head!
There is finally light at the end of the tunnel. I’d like to thank those that have been with me on this journey, that never gave up on me, that support me, that help me, that listen, that stick by me no matter what. I know its not easy to do that, and it wouldve been so easy to do what many others did and turn their backs on me (which I dont blame them for doing) so thank you. I love you.
Things arent going to be easy or a walk in the park.
Things are looking up. I’m going to not only continue kicking the arse of my illnesses, but also look forward to my future, which means working my arse off to get my a levels and get in to university, and ultimatley? Just live a life I’m happy and proud to live.
Here’s to the future!!! 🌠