I have lupus SLE, diagnosed 3 years ago. In Autumn 2014 my rheumatologist changed me from mycophenolate mofetil to ciclosporin, with awful consequences. My eyes don't open properly now, I can't add up in my head anymore, I find it difficult to take decisions where many options are presented, to name but a few. I stopped the ciclo after 4 weeks and although I was taking a low dose, the neuro symptoms still persist today.

I had many neuro tests to get to the bottom of the cause. No one apparently heard of these side effects, so of course I was being patted on my head and sent home being told that it's just the stress of having lupus. I also seemed to have an increase in my BP - my usually stable BP of 120/70, suddenly appeared to be between 138-140/82-90. I spoke to the cardiologist who put a BP monitor and concluded that my average BP was 128/72 which was normal.

In July 2015 (9 months after stopping ciclo) I had two funny episodes a week apart. They felt like heart attacks - sudden lightheadedness, palpitations, soaring anxiety, tingling of left face and arm. I recovered from these within 20 mins or so and was left exhausted for a day or two with a slight chest pain in the left upper side.

Cardio did all usual tests - echo, ECG, blood tests, exercise test, etc. All normal, so told not to worry.

Just before Xmas 15 I started having these lightheadedness episodes again, first it was just that with a low-ish BP of 100 (my normal being 120). Then a heart-attack-like episode occurred and I went to emergency. All tests fine, they discharged me saying that it may be a bit of pericarditis, though there was no fluid present.

To cut a very long story short, since then I've been unable to get out of the house, off the sofa, really. I'm very lightheaded, feel extremely anxious, I have chest pains, headaches and each time I try to move a bit quicker, I get breathless so I can't do anything. My calves are very painful too. I've been to A&E many times during this time, each occasion showed normal tests.

I saw my rheumatologist, my normal cardiologist, a respiratory specialist. My cardiologist repeated the echo and that was fine so he suggested I might have vasovagal response so I should drink more water. Symptoms continued regardless. I'm now extremely thirsty and have lost a lot of weight. I saw a different cardiologist who suggested I might have cardiac spasm or microvascular disease and he sent me to another cardio specialist in the subject.

The specialist said that the symptoms are not originated by the heart and he suspects that it is POTS. He's going to do a tilt table test in 2 weeks time. I'm absolutely in shock about this. I know that lupus could cause this but my lupus is very well controlled at the moment. I'm convinced that it is still that awful drug that caused this and I'm concerned that it will continue to cause problems. Each time I mention it to neurologists they look at me as if I'm mad. I bviously haven't found the right neuro.

I wish someone would take me seriously. I seem to have yo-yo blood pressure and vasovagal response. The cardio specialist asked me how much salt I ate and in fairness I haven't been eating a lot in the past few months because I've started a new diet (the Wahls protocol) that's based on organic, unprocessed meat and loads of veg. Without the hidden salts in the food and my not adding much, I can see how that might influence, but I still think that it is due to the drug because symptoms have occurred before the diet too.

Have any of you had such neurotoxicity to a drug that caused POTS? If so, what treatment have you been offered? I'm at the point of looking for a neuro to Deal with this autonomic stuff. Getting in front of a good one is the luck of the draw. I can't believe I've ruined my health in this way.

If you have POTS, how are you coping with it? I'm so worried that it will be too late by the time i see the right people. I'm worried that I'm losing intravascular volume because I'm very thirsty and have lost a lot of weight in the past few weeks. Everything I read about POTS seems to be quite optimistic about outcome but I don't see how I can be. If it is neurotoxicity, then how can be address that?

Anyway, if you've made it so far, thank you. I suppose I'm just down about all this and I want to hear other people's experiences with POTS. Thank you.