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Everything posted by bombsh3ll

  1. My GP was and is equally unhelpful. Are you in the UK? I am actually a GP myself and only found out POTS existed the hard way when I developed it 3 and a half years ago. I don't think many GPs would know what it is, but there is no excuse for being unwilling to learn about it. If I had a patient with a disorder that I had not heard of, I would take the trouble to read up on it. I found NHS cardiologists in my area equally ignorant and arrogant. Initially my referral for a tilt test was denied - which I only found out about when I phoned after waiting months - because the cardiologist di
  2. I take diazepam which greatly helps the physical anxiety symptoms but not the lightheadedness or headache. The anxiety is definitely physical, it stems from the body's activation of the fight or flight system due to hypovolaemia. It feels exactly the same as when I lost a large amount of blood through postpartum haemorrhage - tachycardia, sweating, shaky, lightheaded, intense fear, feeling like you're dying. Because that blood loss was visible, I was in ICU getting blood transfusions, saline etc. Now, although I am chronically missing probably about the same amount of my blood volume I c
  3. Licorice root capsules from Swanson gave me a tremendous improvement in my quality of life for about a year until the effect wore off. 2 x 450mg caps daily. Works similar to fludrocortisone (basically makes your own cortisol act like aldosterone). I produce almost no aldosterone, but do not tolerate fludrocortisone.
  4. I know it's appalling. I've bought my own too, it is a G-lite pro. It is lightweight and not too expensive and better quality than the NHS ones but you're right we shouldn't have to pay. The sad thing is if you've smoked, drank or eaten yourself half to death the NHS falls over itself to help. I hate being so bitter about the organisation I worked my whole life in but it's true.
  5. Hello, I'm a fellow UK POTS patient, I live in Scotland. I traveled to Newcastle to see Professor Newton for diagnosis but as I don't live in England that clinic wouldn't provide ongoing care so I am left with no care or treatment at all. I am trying to get a referral to the NHS autonomic clinic in London but funding issues make this difficult if you don't have an address/GP in England. I am a GP myself so have been fortunate to be able to try all applicable meds myself however none have helped - fludrocortisone was more vasoconstricting than volume enhancing for me so net effect same or even
  6. I had mild bulimia in my mid teens with a mild relapse in my mid 20's. I developed POTS at 34, sudden onset. For me, I don't believe the two are connected. I had a massive postpartum haemorrhage after my daughter's birth 14 months before the onset of POTS, with a 20 unit blood transfusion, & my onset of POTS symptoms was triggered by blowing extremely hard to blow up a balloon and becoming syncopal. I think either or both of these are more likely to be related but have no way of knowing. I think if the POTS develops during or soon after an eating disorder there may be a causal relationshi
  7. Hi I'm new and looking for a knowledgeable and compassionate dysautonomia specialist in the UK. I live in Scotland where there do not seem to be any, and it is really frustrating to see people south of the border in England getting treatment for POTS/OI on the NHS. I tried to get a referral to see Prof Julia Newton in Newcastle but they will not accept referrals from Scotland due to funding issues. None of the doctors I have seen so far have heard of my condition or offered any treatment. Persephone, I may be mistaken but I think I read you are from Scotland and have been able to access treatments such as DDAVP and octreotide, which I would love to try. If this is so please could you let me know the name of your consultant and if they are NHS or private?

    Many thanks,

    B x

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