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Everything posted by Csmith3

  1. You are describing aspects of autonomic dysfunction but my instinct says that either there is more going on than POTS or it isn't POTS. I expect you already know that you are listing quite a lot of symptoms in common with autonomic neuropathy. POTS can be a cause, but there are many more possibilities. If you haven't already, I would visit a neurologist who has expertise in autonomic dysfunction. As POTS is a syndrome, there is variation in symptoms and it is possible to see subsets of people on here experiencing similar symptoms. I have different symptoms from your son (no hypertension
  2. You foiled me by starting a new thread as I typed my answer, so a cut and paste from another thread... Yes, I get this. The skin on my feet is very soft and tears easily if I get a blister. Very annoying in summer because if I wear shoes without socks, I end up with cuts everywhere and there is no such thing as "getting used to" a pair of shoes. I've been told I have EDS3 plus signs of another connective tissue disorder (Marfans/not sure what!) I think it is just unfortunate genetics since my father has EDS and my mother is hypermobile and has poor quality connective tissue too.
  3. Yes, I get this. The skin on my feet is very soft and tears easily if I get a blister. Very annoying in summer because if I wear shoes without socks, I end up with cuts everywhere and there is no such thing as "getting used to" a pair of shoes. I've been told I have EDS3 plus signs of another connective tissue disorder (Marfans/not sure what!) I think it is just unfortunate genetics since my father has EDS and my mother is hypermobile and has poor quality connective tissue too.
  4. I don't think it affects me much and is definitely worth it for a holiday. I have flown long and short haul and even to NZ a couple of years ago and was fine. I get travel sick which I think is fairly common in people with POTS. For me, air travel (provided I keep looking straight ahead and don't read) is probably the best form of transport in terms of minimising nausea. I tend not to eat a great deal when travelling and maybe that helps because post-prandial hypotension is a big POTS trigger for me. The obvious drawback with flying, unless you have lots of money, is lack of leg room. I
  5. I agree that chronic sinusitis is really miserable. I found an ipratropium bromide spray made a huge difference to me; much more effective than the usual allergy sprays. It helps if you have vasomotor rhinitis (which is an autonomic condition) and it really improved my sinusitis and the endless nosebleeds from the nasal swelling. I apparently don't have allergies but I also take antihistimine pills and they have a small positive effect. Can you tolerate decongestants? I find only the slow release 12 hour ones work. They do make my POTS worse for a day but it is worth it sometimes to ha
  6. Some medical conditions do need to be notified to the DVLA, but not all. For example, a simple faint with prodrome which does not happen when the person is sat down is not notifiable. However, if someone is repeatedly fainting and there is a suspicion it could be, for example, a seizure or serious heart condition which could happen at the wheel, that is notifiable. There are, of course, many variations on a theme. I appreciate that the DVLA website for the public says that fainting (as a single category) needs to be notified, but this is a simplistic message. I can understand why they do
  7. Shelly I hope you have some joy with the local cardiologist. If not, ask if you can see Adam Fitzpatrick or one of his team in Manchester if you are still in the area. They have all the relevant expertise and I imagine they have more capacity than Prof Matthias' team so you could be seen sooner and would not need an inpatient stay for testing. The GP won't prescribe midodrine without a UK consultant telling them to do so. Good luck!
  8. There aren't enough people with POTS for there to be a set course of treatment so I think people on here would give a variety of answers. I think it depends which symptoms you want to fix and whether you have any other conditions which may affect what you can take. Whoever you see (and I've seen POTS specialists and people who don't know much), it seems to be a case of trial and error with a few appropriate medications. None of the medications are authorised in the UK for use with POTS, so it is a case of finding a consultant who is willing to prescribe the drugs because they take the risk
  9. I used to get this a lot and sympathise because diarrhoea and being on the verge of fainting is not a good combination. I felt sick for about half an hour afterwards too and then I am perfectly fine. It tended to happen if I ate breakfast when my body hadn't got going or if I ate a carbohydrate rich meal (and got post-prandial hypotension). Occasionally it happens if I have a bad reaction to caffeine. It was 95% resolved as soon as I had better heart rate control, by which I mean I started an anti-arrhythmic which proved very effective. I think this stopped the tachycardia response to au
  10. I was told that, technically, you should not get used to ivabradine over time. However, I can empathise with your comments as my resting rate has climbed back up to where it used to be. I am about to increase the dose. I should add that in my case, I have some other health issues causing HR problems at the moment so that may be the reason.
  11. Another option worth considering is having having depo shots or an implant. It is no guarantee, but in lots of people their periods stop and this can bring symptom relief. I had 5 years of depo shots and it solved the problem. Then I wasn't allowed to continue due to concerns about osteoporosis. So I swapped to an implant and got lots of bleeding, but still symptom relief. Not such a good solution, but still worthwhile. Admittedly, I am also trying to relieve menstrual migraines in this juggling act. There are other threads to search on if anyone is interested in the longer term (but re
  12. I have a desk job that involves a reasonable amount of overtime. About 5 years ago, I asked to reduce my working days from 5 to 4. I was lucky that my employer accepted without any kind of explanation. I can't tell you what a difference it has made. I take Wednesday's off so I only have to work two consecutive days. (I used to find I felt worse on a Thursday as the week took its toll.) In winter, my work is busier so I sometimes have to go in on a Wednesday. And then I reminded what a slog it is to work full time with POTS. I just end up spending my weekends recovering. But it's mor
  13. Hi Toni Welcome to the forum! I just add salt to food rather than take supplements, so can't answer your question. I think you have probably found the answer already - although logically it wouldn't matter to take more pills less often, salt can irritate the stomach in large doses. I know that sick of hospitals/doctors feeling. When it passes, I would advise you to find a rheumatologist who knows something about EDS. Prof Grahame would be top of the wish list, but there are other competent specialists around the UK. It wouldn't require a commitment to a lot of visits and a diagnosis is p
  14. Statistically, there is a 50% chance of passing on EDS (or any other genetic condition). Even if you do pass it on, it does not mean the child will necessarily have the illness to the same severity as you. I suppose another thing to bear in mind is that a lot of people suddenly get ill with POTS even if they have EDS, which suggests some other factor or trigger is implicated even if the propensity to develop POTS is already there. If I look at my family, very few have EDS. My Dad must be a carrier, but has not developed any troublesome symptoms. I think if I felt well enough to look after
  15. Very occasionally, my BP goes high when I'm on midodrine, but it is only a temporary problem (for a few days). I will ease back on the midodrine and other measures and let it settle down again. I say other measures (salt, compression), but I think it's cutting back the midodrine that has the only significant effect on this BP spike. Then I'm back to normal. I have no idea why my BP suddenly goes high so I accept that sometimes it will. Admittedly, it only just into the high BP bracket (but compared to normal, it is a big increase), so I have no reason to get too concerned. If it was helpi
  16. Hi Emma Welcome to DINET! I am sorry to read you have had a rough time over the last couple of years. Do you know what brought on the sudden downturn in your health? Had you been ill with something else? Anyway, it looks like you are getting all the right testing and treatments and I'm pleased you are reporting some improvement. Sounds like a full time job with all that testing! Best wishes
  17. Hi Tilly Yes, I agree that exercise is one of those areas where there can be a complete lack of understanding by both doctors, friends and family. You are not imagining that it is harder for you than the average person - it really is. Your body is already working harder than most just being upright, so any sort of activity will put additional strain on you. Plus for many of us, it takes longer for our hearts to return to a normal rate and recover. I wish I knew how much activity was the right amount to do for maximum benefit without risking a set back from overdoing it. I'm not sure there
  18. I must be lucky because it makes a real difference to me. In particular, it helps me cope in hot/humid weather, giving me more standing time and I generally feel less light-headed. I wasn't sure at first that it was doing much as it can take a while to reach a useful level in the body so the improvement is gradual, but when I've had to stop taking it I've realised just how much it does help. I've never had any problems or side effects with it either.
  19. Mine's generally about the same as yours and, like you, I am worse if it dips. I can feel symptomatic at 100/60. Much higher, and I think other factors are contributing to feeling ill. For me, the critical thing is the diastolic pressure, though once the systolic is over 100, the diastolic is usually 70+ in any case. In the UK, low blood pressure isn't considered a problem and there is no licensed treatment which is all very frustrating. This is on the basis that people with low blood pressure tend to live longer (quality of life doesn't seem to feature!) Therefore, it is usual for me to
  20. This is probably just an excuse, but I find it very difficult to keep up the "healthy" lifestyle. To me, to do the list of things that would be helpful to our health looks like a full time job. I know that when I'm fit, I am generally in better health but for some reason, it is difficult to motivate myself and, as you say, it's even harder when you are feeling low or hitting a bad patch. I suppose I would try to do one or two things at a time rather than worry about following all the recommendations. You sound like you are doing very well with the lifestyle changes and I wouldn't worry ab
  21. Maxine I admire your tenacity and I'm pleased you are making progress with the neurologist. Thanks for sharing the new information. Best wishes
  22. It is a different set up in the US which has more flexibility - here it really needs to be an exceptionally good GP. And even with an excellent GP who has capacity to give this level of service, it all takes time as they get to know you, the illness and who to refer to. No one will readily be able to answer all your questions because the knowledge of the mechanisms that cause the illness aren't fully known. Also, medicine is just too complicated for someone to have a specialist knowledge in everything, so the GP is the generalist to manage you as a whole person. If you are thinking, C
  23. I suppose that deep down, I always knew there was something wrong with me that most people didn't have. Like Tilly, I was generally seeing the same doctors, and once you have been brushed off or misdiagnosed, it is difficult to go back. When I got into a really bad patch of health and struggled to hold down my job and carry on with normal day to day living, people would start telling me that I should go to the doctors and get it sorted out. I knew they were right and eventually enough people would say it to me and I felt that justified me going back to the doctors and asking the same questio
  24. I tried the tell your doctor your symptoms and hope they come up with a diagnosis and it didn't work. I do think POTS is a difficult one as we tend to hold back from telling the doctor all the symptoms from fear of being labelled a hypochondriac. But certainly when I first went to the doctors about 20 years ago, it wouldn't have mattered if I had told them all or not given the lack of knowledge on dysautonomia. What continues to annoy me is that instead of saying they don't know, they feel they have to diagnose something categorically even if it's the wrong thing. I spent a lot of time and
  25. The thing with forums is that you want to keep the opening thread reasonably brief so people will read it, but invariably end up missing parts of the story which people then pick up on. I've been there too! It sounds to me like you are stuck with your situation if you want to keep the scholarship. I might get shot down for this, but if all possible, I would put up with poor health for the year to get the degree finished. It might not be pleasant, but if it's manageable you might just have to accept it. I do sympathise that your college isn't being more accommodating, but it seems you have
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