Pots With Extreme Painful Flushing, Advice?

[~elizabeth~]

I've only just discovered that the problems I've been suffering for over 20 years are probably due to POTs, which I didn't know existed until someone recognised the symptoms I was describing on the erythromelalgia board. I've had symptoms of autonomic problems since my teens (very low body temperature, almost complete inability to sweat, tinnitus, allodynia and chronic neural ear pain, numb extremities, periods of uncontrollable diarrhoea followed by extreme constipation, racing/irregular pulse, disturbed menstrual cycles, virtually every symptom on the list). Until recently I'd assumed it was all thyroid-related. I also have a diagnosis of undifferentiated connective tissue disease.

Last year I had a really bad attack of all of these symptoms. My right leg went completely numb, purple with muscle claudification, had breathing problems, non-stop diarrhoea and terrible tachycardia with angina pain. At the same time my face started flushing/burning with change of posture from vertical to horizontal. This for me is the real problem, as the scalding pain is unbearable. After going to various dermatologists and trying all the usual rosacea treatments, we've now ended back at square one. Alphablockers didn't do much, betablockers actively made ALL symptoms worse, high-dose gabapentin and morphine have made no impact on the pain. The only thing that stops it is standing up for as long as possible, whereupon the problems shift to the legs. Once I lie down again, the burning and redness gradually shift back to the face. The only thing that seemed to normalise it temporarily was when I was on a drip for a few hours over this weekend, having gone up the hospital as I just couldn't stand the symptoms any more.

I'm due to see Professor Mathias at St Mary's hospital (the UK expert on these things) but I'm not sure if he'll be able to help with the face flushing problem as it's not a standard POTs symptom. I'm fairly sure it isn't a mast cell problem, as anti-histamenes have zero effect on it. I have a feeling that it will improve if I can sort out the circulation.

I've tried taking salt/fluids but they caused really bad diarrhoea which probably just made things worse. At the moment, I can't really stay upright for more than about an hour without feeling really dizzy/faint; I can only walk with compression stockings otherwise the foot/leg sensations are really bad, and my heart rate goes up by at least 30bpm when I stand up along with diastolic BP, the drip over the weekend made no difference to this at all.

[julieph85]

I'm really sorry you are going through all of this. Have you ever noticed the flushing occurs with the diarrhea

[janiedelite]

Hi Elizabeth and welcome! I started having POTS symptoms (fatigue, nausea and tachycardia mostly) in 2006. But in 2008 I started to feel like areas of my skin were badly sunburned, particularly on my face, hands, feet and my mouth also burns and tastes metallic. I also started flushing, particularly in response to heat, stress or activity. What prompted me to reply to you was that I notice when I lay down, it takes about 30 minutes but the burning I usually feel while I'm upright in my extremities slowly increases in my face. I've held a mirror up to my face when this happens and it looks from slightly sunburned to tomato red depending on the day.

I've tried gabapentin 2700mg/day which only helped a small amount. Paxil made the burning so much worse. Carvedilol does help a little bit, but makes me tired.

I've realized that I wake up with very little burning most days. The burning really kicks in at around 2pm. I realized that eating is a huge trigger for my burning pain. I started cutting out dessert and immediately noticed a decrease in all of my symptoms (from burning to nausea, fatigue and overall body aches too). My mom has carcinoid syndrome and she also has this burning pain, which sugar makes worse. She follows a low histamine/tyramine diet in order to control her flushing, GI issues, fatigue, and burning pain. I decided to start that diet and found I also get incredible reduction in all of my POTS symptoms. It's a hard diet to follow and has a lot of restrictions. But at least I had my mom to lean on and help me figure out what I can eat.

I still have episodes on increased symptoms when there is uncontrolled stress or heat, or I really want to eat a "trigger" food. And it seems that eating anything at all triggers my symptoms to some degree each day. But I'm so thankful to have some of this burning pain under control!

Just my experience. Best wishes.