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Everything posted by Csmith3

  1. Some calcium channel blockers (eg verapamil, diltiazem) have selective action and, for all intents and purposes, only work on heart muscle - would that solve the dichotomy? I took verapamil a few years ago for a heart arrhythmia - can't say it made any difference to my symptoms. I, like a few others here, am having a hard time at the moment. There is something about this time of year and symptoms worsening. I just haven't figured out what. I have developed mild hayfever in recent years and have been religiously taking the antihistamines for a couple of months. It is warmer, but not hot.
  2. 1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? Yes (stomach as well, but legs worst). 2. Have you ever been diagnosed with EDS or suspect that you may have it? Yes. 3. Do you experience symptoms when lying down even after a night of sleep in your bed? Yes. 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? Not diagnosed, but suspect I have this form very occasionally (say, 5% of all my POTS episodes). 5. Have you ever been informed by a doctor that you have low blood volume? Yes.
  3. If I am well enough to do something, but struggling on the motivation front (which is a common occurrence for me), I need to have a goal or deadline or I just sit around watching TV and doing nothing. This could be meeting up with someone for coffee, arranging to go for a meeting, concert whatever. Generally, once I'm up and about I feel a great deal better than when I was hanging around the house. But I agree that despite this logic, it is unbelievably hard to put this into practice. I have had to trade in some of my more energetic hobbies for more passive ones. I like to study new th
  4. Hi I have been OK on long haul flights. I wouldn't say I feel at my best (due to mixture of POTS/dehydration, travel sickness and sinusitis), but I'm not too bad and soon recover. I'm back to normal the following day. For me the worst thing is sitting bolt upright for a long time (if only I could afford first class!) This means I cannot sleep, despite the usual red eye scheduling of flights back to the UK. So, extra leg room is good if you can book in advance. I am better if I can sit with my feet on the seat for a while - like a parrot, my mum would say. I have been known to take pink
  5. If you put "Ireland" in the DINET search engine (third button on top right of this screen), you will see some threads including some members from Ireland. These individuals aren't necessarily looking at the boards every day, so you may need to send them a personal email to request their advice. I'm wondering whether you have a firm diagnosis or if you are struggling to get appropriate treatment. If you can't find anyone in Ireland, it may be worth paying for some advice in the UK, but you would need someone on your side at home to continue care and deal with prescriptions etc. Hope you make
  6. On the assumption that the pain is nothing sinister, I'm going to make a further suggestion. I get coathanger pain and also pain around the bra line. I don't think they are the same thing in my case, but I wonder if the mid-back pain is a consequence of the coathanger pain, maybe from tensing up. Anyway, I had an osteopath look at it whilst I was there for something else. She commented my back was very stiff at that point and I had some massage and manipulation. Since then it has been much, much better. I have also propped up the foot of my bed which really helps my coathanger pain and hel
  7. Hope you are starting to feel better. These sorts of social situations have so many triggers for me. Unlike a lot of people on the forum, I can walk around for some time and I'll be OK. But standing still is a disaster, and social situations usually involve a lot of standing around. Whilst I would ordinarily sit down for a break after a few minutes, I tend to stand for longer in these situations, perhaps feeling it is too rude to cut someone short and disappear for a sit down. Then social situations so often involve alcohol, which I can't really do without making myself ill. So I end up
  8. No family history to report; just me with the migraines. Cath
  9. Yes, I have noticed this as well. 2 or 3 days of feeling better at the start of a cold, but then feeling worse. I have mentioned this to my doctor, but didn't get any answers. I think he thought I was nuts. Although I'm one of the EDS POTS people, I start to wonder whether my immune system needs something else to occupy it and when such a thing comes along, it fights the cold instead of inducing POTS. Maybe having a fever helps? But then I suppose I have sinus infections a lot of the time and they definitely don't make me feel better. I don't tend to catch other general infectio
  10. London is a great city and there is lots to see. You'll have to get a Lonely Planet or other guide to narrow down your choices. If you have any questions, feel free to PM. I don't live in London (live about 90 minutes away), but have been there a lot of times. The sites of London are spread over quite a big area, so normally people use the underground and walk which obviously can be tiring, but the walking distances aren't too far (normally less than 500m) from the underground stations. Warning - the underground is extremely hot in summer! You could get taxis if the distances are lon
  11. There is a broker's report on the Internet which says the price in Japan (where it is already available) is about $4 a day, but they would obviously like to charge more in US/Europe e.g. $16. The $16 was a number plucked out of the air and, of course, this is in the context of influencing stock prices so one would hope it is top end. Mind you, I don't understand why there is such a difference in drug prices around the world when they can be imported. At least fludrocortisone and midodrine (not ProAmatine brand) are very cheap.
  12. How frightening. I'm pleased to hear you received good care and are on the mend. I have no first hand knowledge of this, but I've had a little look on the Internet and it seems that small vessel ischemia is the cause of about a quarter of all strokes. They don't know what the precise mechanism is, but there are thoughts that some people have inherited different cells lining their blood vessels and this predisposes them to small vessel ischemia. I doubt there is information on POTS to say whether this type of cell irregularity occurs, but my gut reaction from what I do know as a layperson is
  13. I think there are a number of things going on here. You can get blood pooling in your hands in the same way as you get blood pooling in your feet and lower legs. Does it tend to happen when you stand? An easy way to see if that is the cause is to lift your arms up and see if the colour changes (assuming lifting your arms doesn't make you too ill). If I'm having a bad day and BP is low, I tend to be very cold. Unsurprisingly, tachycardia tends to make me hot. My normal state is for the core of my body to be too hot, but most of me is too cold so I have lots of clothes on. Thankful - I smi
  14. I know a lot of us have vasomotor rhinitis, allergies and the inevitable chronic sinusitis that goes with it. I mentioned in reply to a recent post that midodrine is sometimes staying active in my system way too long. One unexpected benefit is that I've realised that it totally clears my sinusitis! In a way that previously was only possible with back to back slow-release Sudafed. I know it is logical that midodrine would help, but does anyone else find a single dose of midodrine clears their sinusitis, if only for 10 hours or so? It may be my new barometer to assess the level of midodrine
  15. I sympathise, and whilst I can't offer you any direct help, maybe my story will help. When I first tried midodrine, it was like a wonder drug. Like you, I had the usual side effects from midodrine working and felt much better. Then I went downhill and I've never been able to retrieve that wellbeing that I had for a few months. In my case, it is looking like a combination of drug interactions and the way I metabolize midodrine. In fact the web-sites that list drug interactions mention the combination that I'm on as a theoretical problem, though there are apparently people taking the combi
  16. For what it's worth, I am not persuaded by the current distinction between the two types of POTS. I think POTS has always been there for me, probably due to EDS or similar connective tissue disorder. I think my symptoms really started to show towards the end of primary school because that is round about the age when I stopped running around so much with my friends playing games and more passive hobbies came in, i.e. it was deconditioning, particularly as I have difficulties in building muscle (and maybe this also has a knock on effect to the response of joint receptors?) In terms of hyperad
  17. Blimey! I'm not sure what it all means but I'm wondering what the next stage is. I suppose there could be useful information coming out of this about long term health risks. I read posts like yours and marvel about the sort of tests and expertise you can access in the US. Our healthcare may be free at the point of use, but you need to pick your illnesses wisely to make sure it is something that is well resourced! ANS is a particularly poor choice and EDS not much better. So I will remain blissfully ignorant of any possible brain stem related issue but will be interested to hear of a
  18. I'm not sure I can be much help, but I thought I would say that beta blockers gave me really bad chest pains on exertion, particularly in cold weather. I didn't seem to get any benefits from beta blockers, though I have by no means tried them all, so it was a no brainer to stop taking them. Nothing else has given me such bad chest pains. Fixing an arrhythmia isn't the same as fixing POTS. I wonder if you need both fixing, and you mention a few other things too. I have both and once I had fixed the arrhythmia I felt much better (and got rid of a lot of the symptoms you mention) and it had a
  19. Give yourself some time to come to terms with the diagnosis, particularly if you are in circumstances which means this is likely to be around long term. It is, basically, grieving and on top of feeling ill, may mean you cannot cope with so much right now and need to take time off whilst you are fighting infections which ordinarily you would have taken in your stride. Don't feel guilty about it. This will pass and you will be able to go back to the old days when you just pushed yourself to do more. Of course, there may be times when you think, perhaps I need to adjust my lifestyle and do le
  20. Hello and welcome. Yes, the pattern you describe is familiar to me (and I think a lot of others). I have to wake up slowly and have been up and around for a while before I can tackle food. Basically, if you have a problem with low blood pressure, this is worse on a morning because your blood pressure is lowest at that time. Also, for many of us, eating brings on low BP (postprandial hypotension is the posh term) as blood is diverted to digestion. So eat something light on a morning. Maybe put your feet up for a while after eating. Many of us are on medication to increase BP - you ca
  21. Oh yes, and it seems like it's always been there. Even when I was super thin, which annoyed me no end. As you say, exercise is the only thing that helps - walking and swimming - but I stress helps, it never goes. I have some energising gel which is supposed to help a bit. Doubt if it actually does, but it smells really nice and makes the skin look a bit better. Because cellulite is thought to be caused by the collagen structure around the fat cells becoming weaker, if you have EDS I think it is reasonable to assume that cellulite is more likely to occur and persist. I can't see how t
  22. Oh, I wonder if this is what I had in the past. The slightest breeze and my cheek/upper jaw on my right side were in the worst nerve pain ever. OTC painkillers did nothing. Sitting still and keeping out of the cold helped reduce the number of waves of pain. It came and went within a week each time. Thinking it was dental related and being some distance away from my usual dentist, I went to the local dental hospital. They still exist in cities with dental schools and the one I went to had an A&E department which ran on a first come first served basis (which meant getting there b
  23. Sort of. I once had really bad stomach problems after food poisoning and had trouble digesting food for a couple of years. At that time I was super thin so this was very unhelpful and making my POTS worse. I tried all sorts of things to get rid of it. One of the things were some anti-candida pills from a health food shop. These contain an array of herbs, most notably oregano and garlic, which are supposed to get rid of candida. They certainly did something to my stomach and acted very quickly. They didn't totally get rid of my stomach problems (this needed more drastic action), but I di
  24. Yes, count me in too. I have a wardrobe of either white or very dark coloured tops! I agree that the sweating is ANS, but the cold hands are Raynaulds (which a lot of us have so probably ANS connection).
  25. I agree, sounds like POTS. Perhaps there is another explanation of why you tend to have the problem when speaking to strangers. When you are at home with your family or have guests, you may feel better because you haven't been stood up so much. If you started to feel ill, you would probably just sit down. I find I tend to be spaced out and have difficulty communicating when I'm out and have been stood up too long (eg, shopping or running an errand when it's not convenient to take a rest). Perhaps that is when you remember bumping into strangers and finding it hard to concentrate? Becaus
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