hensor

You mean like collapsing completely and spending a week kinda semi concious with my carer worrying that I might go into a coma? then the next 2 months having to build up mega slow in order to not go back to square 1? Who checks adrenal hormones? Would it be the autonomic peeps (I have an appt in July) or my GP?

"Yeah? But I can get drunk on chocolate cake!"

Hi, I've done a search and looked at lots of adrenaline reference, but this is different. When I have something important to do - as in that I have decided needs doing, I will often be 'OK-ish' while focusing on that one thing so long as I keep going. Then once I am in a 'safe environment' again (like home) I crash. Go like complete jelly, slurr my speach, can't think of words let alone sentances, loose coordination out of breath etc. etc. If I then do another 'important/focused/intense' thing I can 'run off adrenaline' to do it...then crash afterwards. If I haven't quite recovered from the previous crash my crash will be further down and take longer to recover from. If I keep going through this cycle it is like I eventually completely run out of energy and I end up zoned out in bed and something could explode infront of me and I wouldn't care. Then it takes me months to pick up again. I don't know what level of symptoms I actually have during the 'important' patch because I am quite good at ignoring symptoms (years of being told I was fine and believing it, comnined with brain fog) For example: Last wednesday I had a meeting with my bosses. (I am currently off sick, will have to leave and am looking to sue because I am heat intolerant and they knew it, and moved me and my team into an office they knew could not be kept cool enough.) Managers very supportive of me and take my side, it was still pretty intense - and important. I focussed and did OK although at one point my boss did turn round and spray me with my water spray telling me I was over heating - Yes, this is agreed acceptable behaviour - which probably meant I had symptoms that they could see even though I wasn't registering them. I drove home OK. Then crashed on the sofa for the evening feeling completely washed out. could still talk basically though. Thursday I had a hospital appointment, and then had to drive somewhere for another meeting in the afternoon. I did OK while out, although I noticed my speech and coherence was getting worse. (I use a wheelchair out and about, so I don't notice leg-weakness, balance problems etc.) Friday and saturday I spent doing nothing but watch TV. I had to crawl everywhere and completed about 3 sentances all day - relied heavily on hand signals and key words. I also noticed that my chest got stupidly tight when I did anything upright, and my legs and arms kept 'switching off', light headed, no concentration, brain fog etc. and that my heart rate seemed to go pretty fast at times. It seems wierd. It is almost like I can push through the 'trigger' event, then crash when the very large energy bill is presented shortly afterwards. Does anyone know what I mean? Is this PoTS related? any tips?

"If I go like I've had a stroke, just throw a bucket of cold water over me!" and the one I frequently use when someone is getting annoyingly overly concened: "Don't worry, it isn't life threatening or anything. Just Dashed inconvenient" - the second part said in a very posh English accent.

I don't have particularly affected skin either, and have a diagnosis of Hypermobilty Syndrome/EDS. - If you check out the website www.hypermobility.org it might give you the info you need. If it is EDS there isn't a 'cure' as such, but there are lots of management things that can make life a lot easier and keep things under control.

I'm from the UK and am on a combination of Propranolol (a beta blocker) and midodrine. It works for me. Propranolol on it's own dropped my general BP too low but it seemed to help with my vestibular migranes and PoTS. Midodrine is only prescribed by very few Drs cos it is not licenced for use in the UK - so I have to send off to Queen Square NHNN in London every 3 months for a new prescription. Only certain Drs can, and then only for specific patients. ( I don't really understand, just know that my pharmacy has to order them from Germany)

Yup, it does sound like EDS is a possibility, but it doesn't surprise me that your neuro didn't see the conection between the joints and autonomic stuff. His diagnosis seems pretty accurate though with the 'too flexible blood vessels'. Good luck finding answers and getting things under control, Hannah

Hi, if you are having trouble persuading people of the link between flexibility and PoTS/OH etc then take a look at the info in the publications section of www.hypermobility.org/shop There is an article called 'Autonomic Intelligence' available for download which talks about why the two are linked. Also lots of very useful information on EDS/HMS. It's from a UK charity (HMSA) which I have found absolutely brilliant.

Thanks Flop. I have a basic medical tag, but I can't fit all my info on it so I will be saving up for a universal medical ID

I kinda trusted Drs initially. They told me I was fine from teh age of about 3 and, against all odds, I believed that everyone experienced what I did and managed to get along until I was about 22, when EDS went obviously pear shaped, quickly followed by PoTS symptoms. then I started to question the 'nothing' diagnosis. I knew I wasn't insane. Like someone earlier posted, I learnt to trust myself. Because I can be very honest with myself and logical and get underneath any prejudices so they don't cloud my view. I have full 24hr access to my symptoms information - no dr has that, and therefore, now I haev been diagnosed with EDS and PoTS I am in the best position to decide what I need. I will ask medical professionals for their opinion, but ultimately it is my opinion that goes. Perhaps this is arrogant, but 24 years of 'you are fine' and slowly going down hill, and wrong treatment etc. means I now am much more comfortable, and I think well balanced, by treating Drs as human beings who are knowledgable in the areas they know alot about, but not all-knowing. Will stop waffling now, cos my brain is falling out my toes.

I'm from the UK and have EDS & POTS too. - diagnosed at UCH and NHNN. I don't have anything 'official' that might help you, but I do wear compression tops (like top athletes wear), initially for my EDS joint instability&proprioception, but I found that they also help me feel more 'alive' with regards to PoTS. And wearing a very snug wetsuit makes a MASSIVE difference to my fatigue levels and ability to do things in an upright position etc. Infact, I have been known to cycle on my exercise bike wearing a wetsuit simply because then I can! Perhaps it would be worth discussing compression wear - not just stockings - with your specialist?

I just love the thought of wearing a popsicle A bit like a wearable vending machine (dunno what you call them in the US) Has anyone flown wearing a cooling vest? - as in will I get through airport security OK, or will I need special letters from Drs etc.? Any thoughts?

The work situation is far more complicated than 'just' temperature sensitivity, unfortunately. Sigh. - but I have already become branch secretary for my local branch of the professional body that I am qualified under, and have various other projects lined up, and am looking into different voluntary stuff too. The difficult thing is not over-doing it! Anyway, back on topic, I didn't think I would have the money to get one, but I have just (bizarrely) had a pay rise. So providing that my employer doesn't start docking pay for my 'sickness' absence I think I may be able to get one - which would be the 'cool vest lite' I think.

I have 'happy socks' Some are stripey, some have animals on. My favourite pair is bright red and says 'Moo Baa Quack' all over. And I draw little stickmen of things that happen/my symptoms/things that could have happened which really make me laugh, and sometimes make other people laugh too! I started doing this during my first PoTS related hospitalisation

I have had symptoms that I now reckon to be PoTS for as long as I can remember. Always having to stand up slowly and hating the heat - I used to say it made my brain shut down, and later, once internet existed that "my normally broadband brain goes dial-up". But it wasn't disabling until a few years ago. It is hard to say exactly when symptoms started cranking up because I also have EDS which was only diagnosed in about 2007, after years of problems which I honestly thought were 'normal'. Anyway, I then collapsed at work in Jan 07 and they were pretty certain I'd had a stroke (shadow on CT scan) but decided it was psycological when the MRI came back clear. They did mention a tilt table test - but dismissed it cos I wasn't old enough for it to show any issues (I was 24) So I after several hospitalisations etc I was sent firmly down the psych route on the basis that I wasn't depressed! It took over 9 months to stop being effectively bed-ridden. Fortunately I then saw an EDS/HMS specialist who thought I was sane, refered me to autonomic testing at Queen Square, London, and hey presto! PoTS diagnosed in late 2007. I think part of the problem was that I have never fainted, and was so used to 'just carrying on' that I didn't know what I should be telling the Drs. I had convinced myself I didn't get palpitations despite my heart rate reaching 160 just by standing up. My main symptoms look like I am drunk. Very drunk. Midodrine, propranolol, salt and compression stockings later and I am now able to function (ish) I think I was lucky in that it was only just over a year from becoming very disabled that I got diagnosed. thanks to the hypermobility clinic at UCH and Prof Mathius and team at NHNN.

The 'stares' issue doesn't really bother me. I already use a wheelchair, wear compression tops, have bulky black kneebraces and wrist braces, and randomly get out of my chair and wiggle my butt to realign my pelvis due to EDS So I look like a cyborg anyway "my body doesn't work like average - it's special!" usually makes the casually curious shut up, and the genuinely interested ask more. anyway, cool shirts: I am in the process of loosing my job because of my temperature sensitivity (and over a year of discrimination and harassment), at present 'Flollop' is the best way to describe me in an average office environment - hence I am currently banned from them, although I don't think my heart rate goes massively insane. Would people think that a cool shirt would mean that I actually might be able to work again?

Do you have Marmite in the States? It is the saltiest spread imaginable, and is an essential part of my diet - on bread, toast, celery, carrots.... Although I may have to try it on apples now salt on sultanas is also great.

Perfect! Just the info I was looking for! - this site is really really useful. I am temperature sensitive, as in if I am in about 23 degrees C (73 degrees F) for more than a few minutes I get weaker and weaker and end up like I've had a stroke or am several bottles of Vodka drunk, taking anything from 30 seconds to 9 months to recover. As you can see, that isn't particularly hot, and somewhat inconvenient Does anyone know of any UK suppliers of cool vests? Does anyone know if the NHS might supply one?