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Csmith3

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  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. I feel like nothing should have changed, yet I am struggling, particularly with blood pooling. Anyway, I am rambling now! Hope you see some improvement this week. Best wishes
  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. 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? Yes. 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? Hmm, hands and feet notoriously cold, but blood tends to pool in them when I'm standing unless I'm on the verge of fainting. 8. Did your POTS arrive suddenly? No. 9. Is your skin pale? Yes. 10. Please lists the top 6 worst symptoms that you experience with POTS: 1 -general fatigue 2 - worse fatigue on standing/sitting 3 -GI issues 4 -greying out 5 -poor concentration 6 - "adrenaline surges"
  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 things. But I have to enrol on a formal course with assessments or exams because otherwise I would never get round to the studying. There is a distance learning university here which is perfect for this offering university level courses in smaller chunks so you can pace yourself. I have stopped playing in orchestras and instead go and listen to concerts, opera, plays etc. My other trick is the self-help books or get fit books. I read them and get inspired enough to go out and do something. If I'm on a bad patch of health and been housebound for a while, I enjoy it if someone drives me into the countryside or nearby towns. Even if I can't go out and walk around, it's still nice to have a change of scene. I do some charity work, which is mainly paperwork I can do from home and I feel I am doing something useful.
  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 Migraleve's before take off to calm my stomach and try to prevent a headache. If you have any similar remedies, you might want to consider taking them beforehand. UK to Boston doesn't take that long and the flights are generally much smoother than those around Europe, so I expect you will be pleasantly surprised. Have a good trip!
  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 some progress.
  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 helps me to sleep. Other things that help me are applying heat and using a thera-band to do exercises that stretch the shoulder muscles.
  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 stuck with whatever the non-alcoholic drink is, which is usually something I'm not keen on (like some crazy migraine-inducing mixture of fruit juices), so I end up dehydrated. Added to this is the warm room, bright lights etc and it's just a recipe for being ill. As I deteriorate, I stop talking as it's just too much effort, the brain fog kicks in and I'm concentrating on staying upright. People start commenting that I've gone quiet and I just get fed up and go home. When I get home and sit down I realise how bad I feel and it takes at least a day to get back to normal. So I avoid these sorts of events (realise you can't with a funeral), which seems like a shame but I think it's for the best. I don't see any easy way to handle it unless it is a sit down event. Sometimes I limit the time I'm going to be there to make it more manageable, both physically and mentally. If the event is in a hotel, I have been known to book a room for the day and then disappear every so often to have a lie down to recuperate!
  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 infections, so I don't know if I would get the same respite if I got, say, flu or something else. The only other illness I have ever had was chicken pox as I child and I felt great!
  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 longer than you wanted to walk. Accessibility should be fine. I'm trying to think where would have queues. The London Eye is one - there is always a scarily long queue, but actually it moves quite quickly (but still bank on >30 mins). The houses of parliament are open for tours in the summer, which is very interesting, but not a lot of seating around. Other than that, it will be busy, but museums and galleries tend to have plenty of seats if you need a rest. Stonehenge is a long way from London (100 miles and not a great journey). Paris is a lovely city too and is very different from London. Again the tourist sites are spread out, getting around is usually by underground and walking, though you are likely to need to walk further from the underground station to get to the sights. Expect to queue at the Eiffel tower (go early in the day) and the Louvre. Versailles is doable from Paris (10 miles) and there are plenty of coach trips to get you there. I would take the opportunity to see both cities. It will be tiring, but will be worth it.
  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 I wouldn't expect there to be a connection with POTS. One thing to bear in mind is that high BP is a trigger for strokes so I guess you already know to keep that under close check. Best wishes
  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 smiled when I read your post. At any time I have 3 pairs of socks by my bed. One normal pair, one compression and one pair of super warm walking socks and I change between these as my feet alternate between ice cold and very hot! I think part of dysautonomia can be poor temperature control and I can empathize with going from one extreme to another. I have felt rough the last couple of weeks and needed to put more clothes on when I've gone to bed as I'm too cold to sleep. Sometimes I can sleep through the night like this, other times I wake up at about 3am absolutely boiling and feeling a bit delerious! I don't know why, but I gather a lot of people with POTS also have Reynaulds, but I don't think this explains all the symptoms above, it just relates to an overreaction to change in external temperature.
  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 in my body.
  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 combination without any trouble. It all adds a new dimension to the problem and it seems like its taking forever to sort out. If you are having a bad time at the moment, I can imagine it is exasperating. I have noticed in the last few months that if I overdo midodrine, I feel anxious. I occasionally get very cold and shivers too, again when I overdo midodrine. When I say overdo, I'm not suddenly taking a different dose; the problem is that it is staying in my system for too long as my body doesn't get rid of it as quickly as it should. Then the problem escalates if I keep taking the midodrine at 4 hourly intervals as the dose is accumulating. It sounds like there would be an easy answer: just take less. But the hitch is that the effect in not predictable and if I'm feeling bad I don't know whether I should be taking more or less midodrine and whether the last dose is going to start working or not. If I totally overdo it and end up bedridden, I need to have at least a 3 week break from the midodrine to "reset" my system. I will start feeling better within a couple of days but need that break to stop the reaction simply restarting when I take midodrine again. So in answer to your question, yes I would try less and be willing to experiment with changing the dose and the numbers of doses you take in a day. Maybe see how you get on just taking midodrine once a day and build up if the side effects don't reappear. Otherwise, perhaps you could try something else like fludrocortisone.
  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 hyperadrenergic POTS, this came second and is only about 10% of the problem. Bizarrely, this type of POTS seems to wax and wane in me. I think the potential for POTS is there in some people and then it's a case of whether anything sets it off. For me, the interesting thing is that some people get better. I have relatives with EDS who only suffered POTS symptoms for a few years (e.g. around the menopause). In common with others here, I am finding that more and more health issues are coming to light as time goes on. Some of these are solveable and I am definitely in better health than I was, but nothing is really controlling POTS which seems to be how it all started. I wonder if the myriad of symptoms that POTS encompasses is in fact "true POTS" plus various other things that tend to go with it.
  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 any follow up you receive. Best wishes
  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 positive effect on POTS, but I still needed to address POTS separately. In terms of fluctuating BP, I wish I knew as I'm having the same sort of problem and never used to. I agree that hormones seem to add another variable to the equation. A couple of other observations. Does he think this is in your head or does he just not know what to do? You seem to have tried a lot of medications and come off some pretty serious ones in a relatively short period of time, which is unusual in my experience. Complex health problems take time to properly diagnose and treat and I think it's best to only address one thing at a time so you can assess how much a drug is helping or hindering. It seems to me that someone needs to review the strategy they are taking to solving your health problems - perhaps you could have this conversation with your family doctor or specialist.
  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 less so I can feel better. That is a long term dilemma which I think we all face if we are well enough to have the choice. But one thing at a time; give yourself time to mentally adjust and then the rest will just follow. I can't predict how long this process might take for you. I needed a good few months to get back to myself and still have the occasional lapse when everything gets too much. But by and large I am back to my old self, have the same motivations in life, kept the same job and hobbies though probably downsized them by 20 - 30% to improve my health. Regarding work stresses, perhaps you can look at this another way. If you are not well enough to be very productive, you may as well take the time off to recoup. If you need time off for appointments, this is an investment in your future health. Is your boss concerned about the amount of time you have taken off ill? My guess from your post is that the answer is no and you aren't used to having to take time off. I've been there, got myself in a state and then discovered that I was taking less time off on average than everyone else and my line manager wasn't the least bit concerned. I tend to keep my life quite full of commitments, both from a paid and charitable work perspective. In some ways I know it is detrimental to my health because I don't leave enough time and energy to look after myself as well as I could. But, on the other hand, I'm not sure that if I had more spare time and energy that I would use it very wisely. I need the formal deadlines to keep pushing myself; I suppose it's just down to personality. Best wishes.
  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 can search this forum to read about Florinef (fludrocortisone) and midodrine. For short acting drugs like midodrine, one option is to take them on waking and stay in bed until they start working. Actually, there was a thread here recently about people's daily routine which may be an interesting read. Hope you find the forum useful for some tips and reassurance.
  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 the roller would help much. I think I would save my money for something else! If I go swimming, I am a bit self conscious about my cellulite, but my friends say it's hardly noticeable and complain about theirs which I can't see either! I think it's another one of those annoying things you just have to put up with. Best wishes.
  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 before 8am and being prepared to stay all day). After much searching and scanning, they couldn't work out what was wrong, so injected some anaesthetic and cut some nerves. This didn't sound like the best plan ever to me, but I was desparate! The pain did wear off a couple of days after this. I don't know if this was related to the treatment or coincidence. I have EDS. Can't say I had heard of trigeminal neuralgia until I read your post. I'm not sure if it describes mine or not. As Flop says, looks like anticonvulsants are the way forward if you can persuade someone to prescribe them quickly enough to catch this episode. Good luck in sorting this out and hope the pain subsides soon.
  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 did notice that I felt a bit better. I now occasionally go back to them for a couple of weeks if either my stomach or my sinuses are playing up (there are various reports about oregano helping sinusitis and that it can be yeast infections rather than bacterial infection that is causing the problem). So I don't think it directly affects dysautonomia, but it can offer some mild symptom relief for me from connected issues such as when my stomach stops digesting food properly and sinusitis from vasomotor rhinitis.
  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? Because suddenly stopping to chat to someone in the street when you are already feeling ill will make matters worse by further encouraging blood pooling, which will increase your heart rate. We've all done it, but don't be too quick to extend the diagnosis to anxiety, because it is probably POTS.
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