ceindeg

I get minor adrenalin surges during the night, I get woken up from sleeping and I can feel the adrenalin rushing through my body. My heart races and I have anxiety that something has happened or is happening. After a few seconds I realise nothing has happened so I just try to breathe calmly and relax until I fall asleep again.

I know what you mean, when I get these episodes lying down doesn't help at all. In fact, it usually happens to me at night when I'm in bed, so was lying down to start with. Suddenly my heart is racing and pounding, I get electric pains in my chest and I can hardly breathe. Also get the nasusea and needing to get up to urinate a lot while it's happening. I usually wake up my boyfriend and he holds my hand and usually within a few hours it fades and I feel better. But yes, I do feel like I am going to die and it doesn't seem like a low BP episode to me - no fuzzy vision - but then I don't have a BP monitor so couldn't be sure. Always think it would be good to see a doctor while it's happening but the last thing I want to do in that state is sit through a journey to the hospital. Last time this happened I'd had a couple of glasses of wine in the evening, but I definitely wasn't drunk. I've been scared to have a drink ever since!

I sometimes wake up with visible pooling around my abdomen - looks like the lividity in corpses from C.S.I.!! Gross.

I take forever to feel awake in the mornings, then around 10pm I feel more awake than I have done all day! That lasts until I go to bed and then the change of position to lying down makes everything horrible again.

I have HEDS and dysautonomia. Was born with Hypermobility EDS (obviosuly as it's genetic) and if I look back on my life there are symptoms of dysautonomia from as far back as I can remember. It's gotten worse as my pain levels have increased, probably due to lack of sleep and limited exercise. Sometimes I struggle to know where the line is between the EDS pain and the dysautonomia symptoms.

Wow thanks guys that really explains it! DADofPotsSon - I googled "Micturition syncope" and here is the explaination that Wikipedia has listed under causes: "When one strains to increase the flow of urine it stimulates the vagus nerve (usually more pronounced in elderly men with large prostates). The vagus nerve stimulus causes slowing down of the heart (bradycardia) and severe drop in blood pressure." I'm just very lucky I never actually pass out as that could be pretty nasty...

Hi there, this is a bit embarrassing but on several occasions I've had horrid blackout low blood pressure episodes after urination in the middle of the night. I wake up pretty much every night to urinate, and most of the time I'm okay but recently I've started to feel terrible afterwards. It's got to the point where I'm actually scared to go to the toilet in the night. It's very difficult to make it back to my bed, I start to feel dizzy and sick and then my heart rate goes mental and legs get very wobbly, plus vision starts to pixelate and drain. Most of the time I make it back to bed before it gets really bad and then after a few minutes of lying down everything returns to normal. Last time I was still in the bathroom when my vision pixelated and drained until I was completely blind in both eyes - and my hearing went so I was deaf too. I somehow managed to feel my way back to bed (en-suite bathroom so not far) and it took every bit of energy I could find to get into bed. I was lying down for 10 mins until my vision and hearing slowly came back. It was scary and I know it's low blood pressure related but it doesn't stop it being terrifying. I'm just lucky I never actually pass out. I haven't found anything about urination connected to dysautonomia / pots so I wanted to see if anyone else has had similar experiences.

Corina - Thanks for the welcome and the suggestion! Unfortunately with the NHS referral I am waiting to see "a consultant within cardiology" so no idea who I will end up seeing. Rach73 - Thanks for the links I will defo look into them. Where is Professor Mathias? I'm guessing London as that's were are the good ones seem to be. Wouldn't mind waiting 9 months as long as the person I got to see would be able to help. Would be great if there was someone in Bristol as that's not far for me to travel.

Hi everyone, I have HEDS and Dysautonomia - not sure what type, just got a high dysautonomia score in my report from Prof. Graham when I got my EDS diagnosis. At first I was trying to deal with the EDS diagnosis and what that meant, so didn't really pay attention to this strange word in my report. Then one day I decided to look it up and wow did it make sense. So I started to realise that a lot of my symptoms could be caused by Dysautonomia and orthostatic intolerance. I've had a bad back since childhood - disc degeneration/annular tears, slipped discs, now facet joint arthirits. But all the specialist I've seen about this didn't seem to think it was a big deal "oh everyone has arthritis" and acted like I should just get on with it (this was before EDS diagnosis). But for the last 3.5 years I've hardly been able to walk a lot of days. Standing up to make dinner, or trying to pick things up off the floor is just not possible. When I try to go for a short walk, and I mean maximum 10 mins, my legs just stop working and I get so tired I can barely make it home. So when I read about the effects of dysautonomia I suddenly realised that it might not all be down to my bad back. The I read on the EDS forum (EDNF) that people are actually getting treatment for dysautonomia / pots. So I had a lightbulb moment and gathered together as much info as I could to take to my GP. My GP has referred me to a local cardiologist (Cardiff, Wales, UK) but the NHS waiting list is 6 MONTHS!!! I then started to worry that the cardiologist I see might not know anything about dysautonomia, and that I will have waited 6 months for nothing. So my question is do ALL caridologists have knowledge of dysautonomia? Will whoever I see know what I am talking about? Or is there someone else in the UK I could get referred to who is a dysautonomia specialist, preferrably not London as that's too far... Thanks for reading!