Hi Barbara
Thanks so much for your posts, I really appreciate such a detailed, informative and helpful reply.
Well I continue to be unwell, very unwell at times, with no explanations. Did I mention my CT was clear, I am writing this blind so cannot refer to previous posts. Not much left to come back now, just a few outstanding bloods. One is renin/aldosterone ratio which dr requested last week as every time I presented my BP was high, and he wondering if my kidneys were behind it. However, in the 5 days since seeing my GP I am taking my BP regular and it is much more normal, lower in the morning and evening, have dropped to 96/59. He gave me a calcium channel blocker to lower it which I promptly stopped. Plus had a couple of fainting episodes. Am seeing doctor again Tuesday.
I have just over a week left in Australia and as much as I want to delay coming home due to feeling so unwell, don’t think I can. I am trying to improve things but not sure what I can do. I have no diagnosis, but in my head what else actually could it be! What else gives you the sensation you cannot breathe yet everything is clear! This inability to breathe normally is scary, and even though tests clear, I keep thinking I need to get to a&e! Tight chest, hard to get air, like I wouldn’t breathe if I didn’t make myself breathe. Is this serious? It might not be a cardiac cause, but surely autonomic dysfunction could lead to something, seeing as ANS controls breathing and heart rate….. How can this problem be deemed as not serious, with such serious symptoms. A panic attack it ain’t!!
I also continue to have a terrible job eating, no appetite, the weight loss continues. I was normal weight at the end of 2012, I now look very thin. The diarrhoea has also worsened. Thanks for your recommendations re the multivitamin. The effervescent one is in water right? I think I will try that when I am home. I have on/off been taking a multivitamin pill, I should continue. I have been taking gastrolyte which replaces electrolytes. On a few days I have literally been unable to eat anything! Do you have any recommendations as to what to eat? I will try anything. I need to try and put as little stress on my bowel as possible. I had been having 2 build up drinks made with milk to get calories in, but maybe that is making it worse. I am possibly lactose intolerant and don’t know it. I plan to cut out all caffeine, not hard as I only have one morning cup anyhow, and dairy, and try bread, rice, potatoes, vegetables, fruit. Very bland but it is the least of my worries right now. Any trick I am missing with nutrition? I am hoping, maybe erroneously, that if I make my bowel less irritable, it will make my bladder less so too. I do drink plenty of water, and I don’t drink alcohol anyway (or smoke for that matter, so why me!! Lol)…
Barbara do you have POTS, or dysautonomia of some other condition? I am unsure whether there is anything else going on with me, I certainly get regular headaches so I quite possibly have an increase in raised intracranial pressure. I assume the raise is of a level to not be a concern in terms of it being a threat to life? I did have an eye test 2 months ago which was mostly ok, but nothing picked up such as increased pressure in the eye, or a swollen optic disc, tortuous vessels etc…my headaches are often around or behind one eye, I had a period of 2 weeks in October where at 2am each nigh I would awaken with pain behind this eye. It did usually respond enough to NSAIDS to get me back to sleep eventually, and if not then an imigran tablet. As I am so used to feeling rubbish anyway I didn’t see a doctor when I should have done!! I am not that familiar with Diamox but I am thinking that I would need diagnosis and to be much further down the line to get that? I am just starting a trial of Zantac/Zyrtec to see if they help at all, though not sure a week will make much difference. I do have evidence I think of venous pooling, soles of my feet often red and mottled, not oedematous though. I know I am sick that is for sure, and it is not invisible with me, I am pale and visible weight loss.
I will end it here but will look over your first post, and post again if I missed anything. It will be good to chat to you more when I am back in the uk, it sounds like you have been through it all.
Thanks
Richard