Hi Barbara
Great reply, thanks for that. Just to say that no I don’t get the fast heart rate, clammy and cold hands, and instant nausea with fluids, only with food. I did get it with soup once, I did think whether the fact that I was looking down at it with head in flexion had anything to do with it at the time. I have tried to eat a little more today, and I mean a little (still way short of what I should be consuming) and didn’t quite have the tachy, sicky feelings, but lets just say my stomach feels like lead now! Not great with having to consume at least another meal. All a bit perplexing.
My MRI did come back clear, sent straight back to GP, now GP in process of writing a summary for me to bring home. It is likely to say anxiety is at the core of this. I didn’t see the radiologist when I was having MRI on Monday, just the radiographer. I just wondering whether I should ring the hospital dept and just ask a few questions about things easily missed? I know it is not standard practice for patients to do that but your list of potential possibilities in your last message might spark some interest with them maybe!! Minor/minimal change does not seen to interest does it, needs to be absolute! I know that some of my problems now must be nutrionally related, but I shall reiterate something made me sick in those early days!! I went to ER twice, with chest pain feeling and i felt it was hard to breathe. As I sit hear writing this now, I still have a stinging sensation in my chest and n awareness of needing to breathe. I’m very much with Diana on the fact that we all save anatomical weaknesses, EDS or not, that when exposed leads us to get sick.
I sat in the sun today, just for 10 minutes on balcony. Not sure it the weight loss but my were veins bulging!! Soon as I elevate, gone! Another sign I’m sure. It’s important I guess to not attribute every single thing that happens to us as related to POTS! Bit of a trap that. We are still exposed to external factors that can make us ill, I guess having dysautonomia just exacerbates whatever that problem is.
I probably need to do a genetic screen when I get back just to rule out possible causes. It may be that it’s a chronic illness sparked by a virus or one thing else with an autonomic component. I’m fatigued, though more so as sleeping been so disrupted. But still could be a CFS or Fibro. I dont particularly have features of EDS, but then could be affecting me internally more than externally. I know the vascular type is very serious. Though I am pretty sure by age 40 I would have experienced significant problems already with that type. I have not read anywhere that autonomic dysfunction has an idiopathic onset!
You mention about working on the organic basis of fatigue in these conditions? Are you doing some research? You basing it on your own experiences? The fatigue must be difficult to quantify in some people, seeing as some people’s fatigue is made worse by the hopelessness they feel with their symptoms. Very interesting though Barbara. Wish more was being done. POTS has some recognition now doesn’t it but the number of specialists is very thin, and GPs, the blank looks say it all. Increased sympathetic drive is always due to anxiety only in the absence of actual nerve damage! Yes in some cases, not all! By the way when I go home, I will go to my GP, see if I can get a referral to a cardiologist who has an interest in autonomic dysfunction. There is one near me in Bristol, though also the one e in London you mentioned too (not much choice!). I reckon it’s so under diagnosed because GP’s have no clue!
I was thinking of delaying my flight another week to see if I can improve a bit, but not too hopeful 6 and a half weeks after I get sick. Don’t think it works like thus with dysautonomia! Sadly!
Thanks
Richard
(Melbourne, Australia..soon to be Bath, UK)