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Everything posted by Csmith3

  1. Exciting times! Hope it's a very positive experience and you get some new treatment ideas. Best wishes, Catherine
  2. I've been on and off midodrine for 2 years. For a few weeks it makes a real difference; I feel better, my BP is at a normal level and I can stand for longer. I just can't seem to maintain this positive effect so after, say, 3 weeks I feel a bit worse than usual and my standing time is reduced. If I carry on taking the midodrine or increase the dose, I just get worse. I thought I would reach out to you to see if you have either had the same issues or have any ideas to solve the puzzle. Here are your clues. 5mg seems to be the right dose for me. Any less and nothing happens; any more and I
  3. I did look into this. I think you have to take it daily for at least 3 months before there would be any improvement - it's not something where you can expect immediate changes. I could see the logic that it might help, but I don't think you can tell in advance if it is something that would help you as an individual (it's not for general application; most people wouldn't need additional Coq-10). Some people recommend supplementing other mitochondrial enzymes and I must admit that at this point I started to doubt whether this strategy was a good idea. Where do you stop? And for those of us
  4. In my last post I gave you the highlights of what happened with my abnormal EEG. I'm not sure I've given you or others a fair picture of what happened and I think I need to say a little more because the whole process was actually very negative to my health, long drawn out and not one I would wish anyone to repeat. Looking back again at your posts, I wonder if you have already been here so I may be preaching to the converted. If you and your doctor are pretty confident you don't have seizures, I would not get any further EEG testing. I know this sounds very negative and the only thing I
  5. Yes, I've had this on and off for as long as I can remember, though I suspect mine isn't nearly as bad as yours from the description. I have never got it investigated as it is transient and it's not that cold here most of the time. When I went to see an allergist, he said I didn't have allergies, but I had vasomotor rhinitis because my body didn't like cold air (and other things, but mainly the cold) and overreacted to it. I know what you mean about it being worse when you go back inside and I thought it was change in temperature that was the problem, but it was suggested to me that it jus
  6. When my POTS/NCS was at its worst (and I didn't have any diagnosis), I had my first EEG. I started feeling ill during the test and it coincided with an abnormal reading. It's a long time ago now, but I think I felt very faint and it was one of those horrible times when you want to lie down but I had to sit in a chair during the test. Had they not seen me there and found I was able to communicate as usual, they said they would have thought it was a grand mal seizure from the EEG. I have never got the to bottom of why this happens but I do think there is something strange going on which isn'
  7. I have never had swelling or dizziniess due to flecainide, though I see they are amongst the range of possible side effects in the patient leaflet. When I increase the dose or I am at the limit of what I can tolerate, I get visual disturbances which I think are a common side effect. This is most noticeable when I turn my head and it takes a while for my vision to catch up. And I have to be very careful not to get run over when crossing the road! I have come off flecainide several times and though I feel worse, nothing very exciting happens. However, the arrhythmia I take it for is not
  8. I've wondered the same thing. I sometimes feel faint when lying down in bed and the only way I can get to sleep is by raising my legs/feet, either by raising the foot of the bed or I have a foam ramp (not so good for my back but easier to put in place if I happen to need it one night). It never seemed to cause any long term effects. I had heard of raising the head of the bed and always thought this would make me worse. I have tried but just can't sleep in that position, so came to the conclusion it wasn't for me. I used to sleep on my stomach all the time. Not because it is especiall
  9. Actually, now I have my dysautonomia symptoms under better control I do sweat less than I did, but still more than the average person. This may just be me, but I have restarted yoga and one of the benefits for me is that it really improves my temperature regulation and I actually feel warm a lot of the time and don't need to wear so many clothes. Otherwise, you'll have to hope it swings to the other extreme and you stop sweating. Has happened to some of my relatives.
  10. I can relate to most of the responses. If I'm in a bad patch, my complaint would be feeling instantly tired on exercising - feeling absolutely exhausted like I had been exercising for ages when I had only done 20 seconds; immediate tachycardia. I now know not to bother if I'm like this, it just makes matters worse. Then there is the "I've overdone it" feeling that sometimes happens a bit after the exercise, or even the next day, when I struggle to stand up and get very tachy. There is a learning curve with this and I have minimised this reaction as far as possible. And finally the gr
  11. Yep, but unlike EM's daughter, I still feel the cold! No doubt you have tried the special antiperspirants in the pharmacy (with an aluminium compound, I think?) which can help, particularly if you are at the point where you are self conscious from the marks on clothes. For me, they just shift the problem elsewhere so I don't use them all that often, but can be useful in summer. If hyperhidrosis is a big problem, you could consider botox injections.
  12. I have a BMI of 19, but a body fat percentage of 32%. Sadly, I believe these numbers are true and that I can't blame POTS directly. The numbers have been more or less static for years and hardly vary according to when during the day they are measured or my general state of health. Here are my thoughts. I naturally have a very light body frame and very poor muscle tone (I have EDS III). Anything else is fat. For years I was very underweight, but the last 5 years or so my weight has crept up to the low end of normal for my height. Overall, I have had a 40% increase in weight in that t
  13. Yes, this is my experience too. When my POTS is bad, I am constantly hungry and eating enough for 2 people but still lose a lot of weight. I can't really claim to have such a good diet; I eat the healthy stuff but also lots of fat and sugar. Having been undiagnosed for so long, I spent many years being very thin and overeating and now struggle to find the willpower to cut back to a normal amount of food. When the POTS symptoms improve, the weight gradually creeps back. It never used to make any sense to me, but I now realise my weight depends on how well I can control the tachycardia (
  14. Yes they do, and I also went for the stopping my periods solution. My preferred solution was also depo provera, but after 5 years my prescription was withdrawn due to concerns about osteoporosis (I think this is technically rubbish, but I wimped out from fighting that one!) Anyway, I went for an implant in my arm instead (Implanon) which lasts 3 years. For me, not as good, but much better than doing nothing. Plus points compared with depo provera are no weight gain and no problems with feeling a bit "flat". Bad point is irregular bleeding (don't underestimate this if it is something that w
  15. I haven't. Given his rather prominent web-site on fainting, I have always been surprised that his name doesn't seem to come up here or anywhere else. I guess your options are a bit limited since some of the POTS specialists don't see children (assuming your son is not an adult). I also note Dr Deering's syncope clinic is part of the general and old age medicine department. I would call the STARS office and see if they have any recommendations.
  16. Alas, yes. Feel much worse, nausea and have even fainted. Classic scenario for me is eating breakfast or a meal with too much starch, trigger POTS, upsets stomach, go to bathroom, faint seconds later. This happens within, say, 15 minutes of eating. However, it also happens at other times when I haven't just eaten, in which case I feel bad/sick for 15 - 30 minutes, but don't faint. The only thing that has helped me (other than general improvement in symptoms from medication and limiting food intake) was sugar rich mints - I know, hard with the nausea but is worth it to settle cramp/nausea
  17. One tip I read that struck a chord with me was this. It's designed for short term stresses rather than life changing events. The sort of thing that seems like a big deal at the time, but a year later you wouldn't even recall. If something is on your mind, allocate yourself 10 minutes to think about it and what the possible courses of action are. Write down each option on a piece of paper. Often there are only 2 or 3 options (including doing nothing) and they are immediately identifiable. Decide which you will follow. Then throw the pieces of paper away, carry out the action (if any)
  18. I'm sorry to hear you are having a bad time. Yes, the things you describe are familiar to me. I'm not aware of any great solutions to the stress/adrenaline rushes and use the usual POTS coping strategies. I just let the feeling happen when I'm stressed. Having a lie down and being in a cool room can help. Eat little and often to minimse the gastro symptoms. The problem only goes away when the stress reduces, but once this happens I quickly get back to normal. The severity of my response to stress basically mirrors my general state of POTS health, so a general improvement in my sympt
  19. Firstly, I wouldn't worry unduly about the weight gain - it will be worth it if you feel better. Cracking the exercise issue requires a lot of patience. There is no one solution for everyone, so it's a case of trial and error. I am, of course, making the assumption you are well enough to be exercising in the first place. My general rule is start slow, keep it low intensity and for a relatively short amount of time. Little and often. Compare what you can manage now to doing nothing rather than the 2 hours you could do before you were ill. Maybe walk more or do a few chores around the hou
  20. Yes, this is my experience. My local hospital is only small, so I tend to get referred for certain tests requiring more expensive equipment to the next biggest town, and then when they haven't got certain facilities, get referred on again until you get somewhere like Queen Square. And at each stage, everything is retested. I think this is the protocol to ration the most expensive facilities, but I find it incredible that no one looks at individual cases and pre-empts those that are likely to require several on-referrals. I think some of the retesting occurs because the hospitals won't share
  21. There is struggling through work during a bad patch, and there is long term struggling without an end in sight. I sense you are heading for, or already in, the latter category and I feel for you because I've been there and it's miserable. I'm sure you will have already weighed up the alternatives in terms of working hours and career change and perhaps there is an answer there whilst you are in poor health. It doesn't have to be a permanent solution. I see there is an issue with health insurance - I'm afraid I don't understand how all the US health insurances and sick pay are linked, but I
  22. Hello Nancy I'm so sorry to hear you are having a bad time. Unfortunately, being unable to attribute a bad patch of health to anything is pretty typical and it is one of the most frustrating things about POTS. Don't blame yourself - this is just how the illness is. Hopefully with the medication you have, this deterioration in health won't last too long (i.e. it probably won't be as bad as when you first got ill). I don't have bad GI issues with POTS (I know there are plenty that do on this site), so I don't know what to recommend in terms of keeping food down. I can only imagine how muc
  23. I have a similar build to you, but don't have problems with gastroparesis and tend to eat a lot. I have been on and off florinef for several years. I find that any weight gain occurs in the first few weeks of taking florinef (within 2 to 4 weeks). Once I put on a stone, but then other times it has just been a few pounds. I can then take florinef for years and there is no further weight gain. Inevitably, if I start taking florinef when I'm at the lower end of my usual weight range, I put more weight on. I find I have a noticeably increased appetite on florinef, so basically it occurs becaus
  24. Yes, this is exactly my experience. And I am reminded of it when my meds are changed, HR/BP control deteriorates and I have far more problems with concentration, low mood etc. Hope your appointment goes well.
  25. Interesting question. I was very pleased when I finally got the diagnosis. Has it improved my treatment? Probably not, but only because a previously doctor had already gone down the route of trying to fix the symptoms and since there is nothing to cure POTS, having a label didn't change the need to fix those same symptoms with the same drugs. Did the diagnosis make me feel better? Yes, it was nice to acquire the right label psychologically and I don't have to justify to people that I do feel ill. And though I was certain that most people don't feel the way I do, it was good to have tha
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