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bombsh3ll

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Everything posted by bombsh3ll

  1. If you're not keen on/cannot obtain benzodiazepines, have you tried a beta blocker? I don't tolerate them as they reduce cardiac output and cerebral blood flow even more, but some with POTS find them very helpful.
  2. 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 didn't think it was indicated. A previously healthy 34 year old woman who suddenly can't stand up and was passing out, wasn't considered worth investigating. Finally I got a tilt test after explaining to the technician on the phone that all I wanted was to have the chance to walk down the isle and get married standing up! The cardiologists then still refused to see me as the tilt showed sinus rhythm and no postural drop. They clearly knew nothing about the diagnostic criteria of POTS. I have now found a private cardiologist to take on my care but it shouldn't be this way. I hope you get an interested and compassionate cardiologist, that is worth more than any amount of knowledge if they are willing to learn and work with you. If you are anywhere in England there is also an NHS autonomic specialist centre in London that your GP can refer you to. I am currently trying to get referred there but as I'm in Scotland the process is a lot harder due to funding.
  3. 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 can't get any help for love nor money.
  4. 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.
  5. 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.
  6. 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 lower blood volume. I really wish we could get IV saline in the UK - if anyone has managed this I would love to know where and how!!!
  7. 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 relationship eg poor nutrition low blood volume/body weight but equally it could just be that both eating disorders and POTS preferentially affect younger females.
  8. Sorry if this is something your husband has already tried, but I've had terrible acid reflux all my adult life long before POTS and I take omeprazole 20mg which keeps it away. I live in the UK so this drug may go by a different name in the US. I mix 1.5 teaspoons of sea salt in 1.5 litres of water 7 diluting juice and drink throughout the morning, and another half teaspoon in the same in the afternoon. Drinking my salt this way I hardly taste it, get it in gradually and with the omeprazole I still don't get heartburn. I would definitely recommend trying omeprazole and mixing sea salt in a nice tasting drink. I'd hate the idea of swallowing salt pills. Cycling on my recumbent bike is also the only exercise I tolerate, I can't exercise upright. By the way I tried fludrocortisone (unfortunately it didn't help me and also caused headaches and other problems related to sympathetic excess so I stopped taking this), but it did give me the worst stomach pain when I first took it although I had been in hospital and missed my omeprazole. I didn't have any further heartburn whilst taking both, so I would suggest your husband should definitely get a prescription for an acid suppressing medication if trying fludrocortisone.
  9. I've been arguing my case with my family for years now that the more intelligent you are, the more sensitive to noise and light (sunglasses and earplugs are my best friends). I have always been this way even before dysautonomia!
  10. I'm a new member here but a long time reader, and I'm so sorry you've been through so much. I developed OI/POTS nearly 3 years ago and before that my blood pressure had been low/normal. Since becoming ill it has been high (yet I am still presyncopal most of the time unless I do things that would normally raise BP like elevating my legs) When I had a tilt test it went up to 170 over around 114 when tilted up then gradually came back to it's baseline although I felt I was going to pass out. Earlier this year I went to A&E because it was 223/120 -at the same time feeling unwell with headache and presyncope. This is contrary to what a lot of people would think, but I actually think my BP goes high the more hypovolaemic I am, and that when my bood volume increases, sympathetic activation switches off and BP comes down. There are some papers online by Dr Bell a retired ME doctor which talk about this. I can't take florinef as that seems to increase sympathetic overactivity and cause headaches, but hydration and desmopressin help me. I wonder if your BP is going high because you are also dehydrated and not getting enough fluid in, so your sympathetic system is in overdrive? I do hope things turn around for you. B x
  11. 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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