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Csmith3

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Everything posted by Csmith3

  1. Kim I was very interested in your post and, of course, sorry to hear that your training, and no doubt other aspects of life, has been interrupted by a worsening of symptoms. I can empathise (I had a similar thing happen years ago when I used to run 10km races and suddenly became very ill after the slightest return to training). Alas, this is one POTS issue I have never really solved, but this year I have found the motivation to try again and made it a priority. I'm not sure there is a logical answer and I am reasonably sure that standard fitness advice does not work for me. I have found it is possible to exercise at a low level and then I plateau. I don't know how to get beyond the plateau (whilst continuing with my normal life) without crashing. I am trying to be more patient, continuing at that low level for longer than before, to see where that gets me. If I spend my holidays doing something active (eg, hiking), that can get me beyond the plateau for a month or so, but this really does take all my energy during the holiday to make this progress. A few people have mentioned the instant tachycardia on exertion. I can solve this with antiarrhythmics, but at a price ie, general lethargy. I would recommend using a HR monitor in the gym to try to pinpoint what it is that is causing the sudden tachycardia. Has anyone had a problem with sick sinus/tachy-brady? I don't have this diagnosis, but doctors have suggested this in the past and I wonder if this may be related to the exercise problems. Wishing you a speedy recovery, Cath
  2. I try to walk rather than use the car for normal errands. It all adds up and I think this makes a big difference. If I'm struggling a bit with POTS, I restrict this to walking where it's flat and do less. If I'm feeling a bit better, I can manage some inclines and perhaps carrying a bit of shopping. If I'm having a good patch healthwise, I try to go to the gym. I like the fact that it's a safe environment (if I suddenly feel ill, I can have a lie down) and it's air conditioned. I do about 10mins on a cardio machine (eg, reclining bike, walking on the treadmill, rowing machine) and then some resistance work on the weight machines. I usually stay about 45 minutes alternating between the two and if I feel I can just manage another turn on a cardio machine, it's time to go home. My tip is to leave some energy in reserve - this seems to prevent a POTS crash later in the day/the next morning. I have tried all sorts of aerobics classes and sports but find it best if I go to the gym so I go at my pace and I am not tempted to overdo it. I also found that the gradual cool down in aerobics classes was unbearable (my HR stayed high whilst we moved less and less resulting in a recipe for fainting) so find a way to get your HR down safely to avoid the post-exercise crash. My strategy is not one you would find in a fitness textbook, but it works for me. If you can find a suitable yoga class (ie, one that mainly involves sitting poses), that can be enjoyable and relaxing. I know that some forum members are too ill to contemplate this sort of exercise. I have never been so ill that I've needed to use a wheelchair or similar aids. My comments come from 20+ years of experience of POTS varying from "needing much bed-rest but can more or less look after myself" to having a "POTS-modified, but near normal life". Please do not be tempted to do too much too soon or set yourself rigid targets - just do whatever you can. P.S. A few things I find best to avoid 1. Exercise in the morning. 2. Cross training machines (and anything else that involves standing relatively still whilst exercising arms and legs at the same time eg, step aerobics, aqua aerobics). 3. I often see the media saying that however tired you feel, you will always feel better if you exercise. Sorry, but that just isn't true for me. If I feel rough, exercising makes me worse so I avoid formal exercise until I've got a bit better.
  3. Many thanks. You seem to have more choice in the US in how to organise your health care. We are going down the same route of seeing different specialists at different hospitals of our choice to get the most appropriate specialist care but lack resources (whether private or state funded) to coordinate the whole care package at a family doctor or general physician level. One implication is that we have no quick access to any expertise beyond common ailments (or in the case of true clinical emergencies). For example, my family doctor has no direct access to an ECG (EKG) which would probably be the most sensible thing for me to have now - it would take weeks for me to get an ECG even if I paid the bill personally and months if I went down the state funded route. Anyway, enough of the rant, I understand and appreciate your warning and I will be sensible about any adjustments I make. It is perhaps telling that no one has posted that they take, or have taken, midodrine with flecainide. I'm also interested in all the positive reports about beta blockers. I have tried some in the past but got none of the benefits whilst discovering what angina feels like which was scary! Maybe I need to try some others as the outcomes reported seem very specific to the drug type and individual. I'm not giving up on the midodrine yet, even if I have to restrict its use to one or two weeks a month. Thanks everyone for reading. If I ever work out what is going on with these meds, I'll let you know.
  4. Ernie, Pat Thank you for your replies. Pat, the midodrine also slightly reduces HR and I see what you mean that the anti-arrhythmic (flecainide) is probably keeping the rate low. It's difficult to know what to do next as I'm not sure there is an equilibrium to be reached or whether the two drugs are not compatible. Disappointing as the midodrine was working well, but I am already in last resort territory with the antiarrhythmic. I think I'll try reducing the flecainide and see if I can stop the fainting without bringing the SVT back too much. Otherwise, it's back to the cardiologist....
  5. Hello all This is an appeal for ideas, particularly from long term POTS and NCS sufferers. I have been on and off midodrine for some time (and longer term on other things including antiarrhythmics). For a few weeks, adding midodrine really helps. It reduces the POTS symptoms, I can stand for longer and if I have a relatively busy day, I no longer pay for it quite so badly the following morning. My stats support this: my BP is up to a sensible level, HR a bit lower than usual but I think OK. I suspect you already sense the but... The hitch is that after a few weeks of regularly taking midodrine, I find I feel faint and do faint more often than usual. A lot more often and the pre-syncope symptoms don't easily go away, even if I sit down or lie down. I feel sick which is unusual for me. I have also had more difficulty than usual in sleeping and get that bizarre sensation of blood pooling in legs when you are already lying down. Historically, POTS has been the big problem. I feel like I've traded a reduction in POTS symptoms for an increase in NCS. Has anyone else experienced this on midodrine (or similar)? Any ideas why this is happening? Many thanks, Cath
  6. Hi I have become increasingly heat intolerant with POTS, but humidity is the bigger problem. I live in the UK so this is not a big issue most of the year, though when it is hot we aren't really geared up with fans, aircon etc and my workplace gets ridiculously hot. I once went to the Carribean on holiday and although it wasn't that hot (80 - 85F) and there was a breeze, the humidity made me very ill. I felt like someone was sat on my chest and could hardly manage to walk any distance (like I'd suddenly aged 50 years!!) I spent my time moving from one air-conditioned area to another and had to minimise any sightseeing/walking in open air. This instantly reversed on returning to London. Frankly, I'm amazed how you guys manage living in hot climates. Best wishes, Cath
  7. Hello John I would echo the other comments, and just wanted to add that until I found some helpful medication to control the tachycardia, I really struggled to keep my weight up despite eating a huge amount of food. I was also convinced that having a low body weight exacerbated my symptoms. Alas, now I need to exercise some portion control! If you were fainting a few years ago, perhaps there is an underlying problem and it is common for people to have good and bad patches with dysautonomia. For me, the key issue is being able to minimise the bad patches rather than holding out for it to go completely. I found I felt worst at the age you are now and improved in my 20s. However, I'm not sure how much of the improvement is related to age and how much was finding appropriate medication (getting a diagnosis and medication took many years for me - you sound like you are making better progress) and also lifestyle changes as I learnt what helped and what didn't. Best wishes, Catherine
  8. Hello Sometimes I find that lying down for a while in a cool, quiet room helps deal with the sensory overload and then I find that after an hour or so the brain fog has cleared. If not, I agree with Meg; it's very frustrating and I tend to sleep it off. Having found an antiarrhythmic that works for me, the number of episodes of brain fog has significantly reduced.
  9. Hello Mary Just wondered how long you have been getting Depo shots. It took about a year from the first shot before my periods stopped completely. I have also tried Implanon which for me was better than nothing, but has not had the same success in stopping my periods (or symptoms). Cath
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