That’s interesting that you mention sleeping sitting up. I can’t keep my eyes open about mid-day and have to nap and I started to nap sitting up on the couch with the collar on. I noticed if I wasn’t horizontal, the tachycardia, burning up, SOB (shortness of breath), red & hot swollen toes, weakness and all the other crazy symptoms weren’t quite so bad after the nap.
Thanks again – this will be of great help until I can find a doctor that will read TDT Part 2. You mentioned you had a head and neck injury that made things worse for you. Can I ask what happened? I had a severe neck injury 24 years ago. I was skiing and wiped out on ice and my head whipped back so hard and hit the ice. I tore everything from my ear to my collar bone. I believe this ‘set everything in motion’ for me. I have POTS, EDS, Raynaud’s, opposite of Raynaud’s, PTSD, to name a few.
1. Sure, that’s the same way I found out that I needed to sleep sitting up, in order to lessen the symptoms. I don’t fully understand the mechanisms but Gravity plays it’s part.
2. Regarding my fall, I fell swiftly backwards on a slippery path, which accelerated the fall. I fell at an angle and on the way down, about 12-15″ off the floor, I hit a stone window-sill with the back bottom of my head, at the right hand side. This forced my head sharply into flexion and twisted my neck to the left as I continued to fall. I then hit the left hand side of my head on the floor as I landed, but not half as severely, though it was a sort of double whammy. I heard my neck crunch in between the two impacts too but my memory erased this fact for several years after and I only remembered it, as I was constructing the drawings, when it came back as clear as day!
It felt like I’d knocked my head off my shoulders at the time and my head was sort of ‘hung’ with my chin forwards. It was 5 years later before I finally got referred to the Spinal Injuries Unit and they put me in a Philadelphia Collar and brace, which made a BIG difference to my symptoms. This held my head in a much better position to my neck, allowing better flow of CSF. Some symptoms were alleviated immediately, some took a much longer time but I believe the body is a marvellous piece of engineering and, if you give it the right environment, it will do it’s best to recover itself.
I’ve still a long way to go, I thought I’d got ‘as good as it gets’ but, having discovered the Driscoll Theory, which makes Sooo much sense to me, this has given me great hope for the future.
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!