Mermaid

Yes, I have this too. I get it from standing too long, being in a warm place and randomly. Every day, at around 5-5.30 my hands turn deep red and the veins in my arms, hands REALLY pop out, settles down the happens again after 9 and then stays like it. It's very weird and uncomfortable! It happens to my feet too, but later on in the evening, they escape the 5.00 pm warming. Sue - I get the white, cold feet too and have to take care not to develop chilblains. It's seems like some sort of vascular instability/over-reaction.

My heart rate rises 40-50 on standing but the tachycardia is also tolerable for me and on the back burner of my sympotms also. I'm also diagnosed with NMS but haven't fainted for eighteen months. It's not tachycardia that prevents me from walking (even short distances) but rather red, hot, feet. I can't work out whether this is blood pooling or not. I also have temperature regulation and gastric issues that are now worse than the OI. For me, OI has improved. So, you're not alone!

Hi TCP, so sorry to hear that this has happened. Hope the Ivabradine helps. Is it possible that your GP might refer you to the NHS Sheffield POTs clinic? With the acknowledgement of autonomic dysfunction he/she might? I think that can be done by GP referral. As you know, I had the autonomic tests done done in London privately (which confirmed POTs and NCS in my own case), however the diagnoses have not made much difference in terms of local care, treatments or search for an underlying cause. To local consultants (rheumatology/ neurology) they seem to be just words on a letter that they don't understand or have any interest in trying to. I just get the see you in six months thing. I often get the feeling that they don't really believe in the condition. My GP is sympathetic and helpful though. Saying this though, I completely recognise how important and validating correct diagnoses are for a sufferer, especially after years of seeing doctors and so on.

The 'b' stands for 'benign'. Many experts believe BJHS and EDS 3 to be the same entity. Personally I think different doctors just use different terms.

Hi TCP, thanks for your reply. I agree that a higher incidence of varicose veins is linked with EDS, however this is just a swollen area - no signs of veins, nothing green or blue. They do sting though. I guess I just don't want this to be varicose veins. Hope you are doing ok.

Thanks for posting these Katybug and your experience. I had ruled out mast cell issues and allergies as an underlying cause or contributor because of my lack of classic allergy symptoms, this has made me rethink.

gjenson - I've assumed the dark circles are from poor circulation but I don't really know. It's often allergies for some people but not so in my own case (I think). I do use concealer if I have to be seen but that's not an option for you, I guess Xrobin- I hate the veins, not only because of the look but also it's very uncomfortable when they are really super-dilated. Mine disappear when it's cold and then pop out in the evenings whatever the temperature. It really is a visually weird and scary symptom, although l'm getting more used to it.

You're not the only one. I have little dizziness also. I do have blurred vision and very high heart rate, especially in the mornings. I feel breathless as if I'm trying to make my tea while running on a treadmill but not really dizzy. It's doesn't feel good though, it feels like I can't get enough air. My worst symptom is toe / feet sweliing and burning when upright and blood pooling in legs, plus recently headaches. My resting heart rate is 50-55 rising up to 120s in the mornings. In the late afternoons and evenings it's down to the 80s standing and high 40s lying down. But I mainly don't look anymore, it only makes me feel more panicky. I check it every now and then in the hope it's improved, not so far.... I'm also diagnosed with Neurally mediated syncope but haven't fainted since Aug 2013 thankfully. I did have dizziness when all this started but it's improved even though the numbers are the same. No idea why.

Dark sunken, panda eyes, yes. Also more visible veins and the blotchy skin...

I get red, hot, slightly swollen feet and toes from standing and walking just short distances too, much worse when it's warm. The skin does look shiny. This for me is worse than dizziness and tachycardia and is what makes me need to sit and elevate. I've also improved a lot in terms of dizziness so yes, I can relate to the annoyance! I also have swelling behind the knees but not ankles which is weird. I often get the red, hot symptoms at night too when I'm lying down watching TV and it can be one foot, part of one foot, both feet, just toes. Its not horrifically painful for me, not pleasant at all though. I'm sorry you are dealing with pain.

Hi Goschi, I have EDS, POTs and probable SFN also. I say probable as we don't have access to skin biopsies in the UK but I've been told that my pain, stinging and vasomotor symptoms are due to problems with the 'small nerves'. I often wonder which comes first - is SFN the root of POTS, due to damage/dysfunction of the small nerves and are EDS people more prone to SFN for some reason?

Hi Lyla, that is so disappointing and frustrating! I have an appointment next week in Sheffield at their 'POTS clinic'. I'm hoping to get some information on Ivabradine as a replacement for Propranolol. I hope that's not where you went, if it is I might not bother as it's a long trip for me. Are you taking any medication at the moment? Barbara

Same here (as Raisin), midodrine doesn't have any effect on my heart rate or BP. I also think it helps me to 'think' better, I don't notice much difference in visible blood pooling symptoms though.

Hello, One of my symptoms is a constant runny nose with lots of clear mucous. I haven't had any upper respiratory infections but I do get nasal sores and for this use an anti- bacterial cream. I've had this symptom since PoTs started for me I and have decided that my nasal vessels must be as dilated as those in legs and arms etc. I don't think this is allergies either as it's more or less constant (but not as bad when I'm lying down). I do take Midodrine and this hasn't helped this symptom in my case. I have a nasal spray (Beconase in the UK) that does help to some degree.

For the last few months I've had swelling behind both knees on standing, (in the back of knee cavity), that disappears when lying. There is a feeling of fullness behind both knees and some mild stinging pain. I have had an ultrasound to check for Baker's Cysts (from possible arthritis) - the results show no Baker's Cysts but some 'venous and vascular congestion'. The rheumatologist feels that this is 'probably due to POTS syndrome'. I'm wondering if anyone else has had anything similar? i've searched the forum and it seems Michele (I believe the forum founder?) had the same in 2004 but can't see anything more recent. I already take Midodrine 10mg and Propranolol 10 mg. Barbara