Yes, I’d get back on the multivitamins ASAP and the Boot’s effervescent ones are taken in a glass of water. I know what you mean about this forum, it’s unfortunate that you cannot see the post you are referring to. I work-around this by cutting and pasting the post I’m responding to into wordpad, then I can refer to it, as I’m writing. I also copy (or write) my post into a wordpad document, as a safeguard, as sometimes this forum looses it as you press the [Submit] button!!
A CT scan is ok for looking at bones but not much cop at examining the soft tissue, in my experience, you need an MRI for this. Just because they say your scans are clear means nothing. I’ve had about 8 MRI’s, all which showed much the same, 1 reported the partially empty sella, 1 reported the Cerebellar Ectopia, NOT ONE radiologist picked up my Cranio Cervical Instability! – there were several other things that they missed too – I rest my case!
Yes, I’ve come across that renin/aldosterone ratio recently, though I can’t think what for. I take it they did a Coagulation/Thrombotic Risk Panel set of blood tests? Whilst we are talking medical records, I would advise you to get copies of everything (radiology on a disk with viewing software) before you come back to UK, if possible, you’re probably going to need it.
I have put my ‘condition signature’ below for comparison. I have to ask, have you injured your head or neck? forgive me if I’ve asked before. With regard to the raised intracranial pressure thing, I did deem a way of working it out at one time but I can’t remember how I did it just now but it was non-invasive, based on blood pressure, if I remember rightly. I’ve heard of bad reports about lumbar punctures, so if it was me I’d avoid that at all costs, I don’t think it’s recommended for people with EDS. My symptoms were occipital pain, soreness at the vertex (top of head) on a morning and pain, like a pressure behind my right eye, a rigid cervical collar (Philadelphia) got rid of the occipital and vertex pain by stopping my head from sliding forwards and going into flexion. The Diamox has much lessened the eye pain.
With regard to your eye test, did you get hold of your fundus photos ? My optician missed the tortuous vessels and the abnormal artery:venous ratio, it was only when I reviewed it with her that she took the time to look in more detail and spotted them. She totally missed the disk problem and I didn’t know how to identify it at the time but I went to see a neuro-opthalmologist and he spotted it – then I got the Diamox, no probs.
With regard to your sleeping position, I should avoid sleeping flat, both with POTS, as with other heart problems, you are better elevating the head of the bed. I have to sleep sitting up to avoid problems.
I think we as a community, have underlying anatomical weaknesses, that leave us very vulnerable to injury, be it from trauma, surgery, or virus. There seems to be a common “core set” of conditions with a likelihood of one or more “add-ons”.
My personal opinion is that there seems to be a common association between LVDD (Left Ventricular Diastolic Dysfunction) and POTS (Postural Orthostatic Tachycardia Syndrome). Here’s a good, nay excellent (but long!) video by Dr Paul Cheney on LVDD:-
(For those of you new to the site, you have to cut and paste this link into your browser, to watch it.)
I have a transcript of the video, should you wish to have it, send me a private message.
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!