Hi Sunshinelollipops,
Yep, that just about sums it up when trying to get answers for such complex medical problems. I caught my first glimpse of the multi-billion dollar medical machine while doing undergraduate studies in neuropsychopharmacology. I dumped the whole idea of devoting my career to medical research when I was first exposed to the dirty underbelly of it all.
Fortunately, my logical, analytic brain has served me well and has enabled me to find a viable treatment for a 20+ year bout with vestibular dysfunction that stumped the best neurotologists I could find. These guys were great doctors who cared about me as a person and were not afraid to tell me that they did not know what was causing my symptoms. They also did not roll their eyes when I wanted to discuss the current research on the subject.
The main doctor I saw had edited a 1500-page medical school textbook on neurotology, which covered everything you never wanted to know about disorders of the ear and vestibular system. Before delving into my own research in Internet Land, I bought the book and read it from cover to cover (good thing there were lots of pictures!). I did this so I would know where NOT to look when searching Medline online.
When I fired up the Medline online database, I just started typing random words into the search field. I knew I had EDS, so I typed that in and then looked for new key words. I soon learned that not many people with EDS also have the kind of vestibular symptoms I did. But the word “platelet” came up in a few articles, so I did a search on “platelet vertigo” and the rest is history. I now take antiplatelet medication for a platelet “clumping” problem and the vestibular symptoms (along with vision problems and the weird cold weather shoulder and hip pain) are gone.
After doing a bit of research on MTHFR and learning that about 15% of the population also comes up compound heterozygous C677T/A1298C, I cannot see how this in and of itself is significant in my quest for better understanding of the “weird head” symptoms I have in the transition from wakefulness to sleep. I know that if 15% of the population had this problem, they’d be making a lot of noise about it because it is extremely uncomfortable.
So, it looks like back to the drawing board for me…