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targs66

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About targs66

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    Advanced Member
  • Birthday 06/02/1963

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    Female
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    UK (but from US)

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  1. I find that I am very intolerant of any kind of steroids. Even at very low doses, I feel shaky and extremely agitated. The only thing that I have found tolerable is a very small dab of hydrocortisone cream, which I use on occasions when my BP is very low. I really had hoped that fludrocortisone would help with low BP but along with the other symptoms, it was giving me ocular migraines, so I can't take it. I have heard that this (steroid intolerance) is not that unusual, but I don't know if that's due to genetics-? I hope you find something that works for you!
  2. I'm really sorry about your frustrating experience -- but thank you for the chuckle! I'm convinced Nolan is brilliant, too. To answer your question, I do push myself. There are times when I think I must be crazy to be out in public stumbling around half-conscious, clutching at walls and on the verge of falling, but I feel the same way: if I don't walk, I will get worse. Sometimes the dizziness comes in spells, and if I can just sit it out for a bit, I can continue. (Other times, not so much!) I hope you find some answers!
  3. @cleo I am ridiculously sensitive to most medications, too - can’t even tolerate most vitamins - but I did not have a bad reaction to dissolving stitches (10+ years ago for hysterectomy, and more recently for minor surgery to remove a basal cell carcinoma). I was also able to tolerate an antibiotic that they prescribed after the BCC surgery (Keflex) with only some minor and manageable stomach and gut upset. Best wishes with your surgery!
  4. @Sushi That is odd! In both echocardiogram reports (which were done at different places), the atrial pressure is described in a section titled “Hemodynamics” , and that section starts with “Doppler pattern suggests...” then it goes on to list the atrial pressures. I did notice that an echo report that I have from the UK didn’t list the atrial pressure. I will post an update when I find out more. Thanks for your input!
  5. @Miraclemaker11 many thanks for your kind thoughts. I think you are right, and this is all part of the autonomic problem, as opposed to a true cardiac dysfunction. I’ll be glad to spend some more time with the cardiologist and get his thoughts. That is a good tip re: Midodrine, thanks, and I think I have heard of some people who have had success on small doses! I personally did try taking very low doses of Midodrine after having difficulty tolerating a full dose. It does seem to have the desired effect briefly (an increase in BP, and more alertness) even at those low doses — but I still would “crash” within a few hours after taking it. Oddly enough, after the initial benefits wore off, my heart rate would become very slow (50s-60s BPM), which may explain the “crash” feeling. I’ll be curious to see what other members have to say about it when you post the question to the board. All the best to you and your son!
  6. @Miraclemaker11 I am sorry that the Florinef didn’t work! I agree; it’s really a guessing game to try to find a medication that is helpful - and that doesn’t make things worse! Sending compassion back to you and your son - with thanks!
  7. @sushi - thanks for this; it is reassuring to think that it is a common finding for dysautonomia patients, as opposed to being caused by something more sinister. To try to answer your question, I find it quite confusing - what I have read suggests that the heart is encountering some kind of resistance in its efforts to move the blood around (for example, a damaged mitral valve would create resistance). This resistance thus causes a sort of “logjam”, as the blood is not moving as it should, and that increases the pressure in the atrial chamber. I don’t know if the atrial pressure causes the diastolic dysfunction, or if it is the other way around - does the diastolic dysfunction lead to a reading of increased atrial pressure on an echocardiogram? To add to the confusion, my doc said that the radiologist must estimate the atrial pressure, as there’s not a precise way of measuring it, which suggests it’s a subjective number. As I am sure you can tell, this is all new to me. I will post an update if I get some clarity on the above — and I certainly welcome any corrections! Thanks again for your comment.
  8. @lieze - thanks for your kind words, and I am sorry that you are having such terrible anxiety issues! I agree, sometimes the anxiety is as bad or even worse than actual illness itself. I am feeling a bit calmer about it all today; I think this new possibility posed by the doc yesterday - a heart issue - was enough to set off terrible worry that my very limited level of functionality is just definitely destined to get worse. That may be true, of course — but in reality, it’s not definite; it’s not even a diagnosis yet, and I am confident that this particular doctor would have immediately taken action if it was necessary. I know I am just wasting limited energy worrying about the what-ifs! (Can you tell that I am trying to give myself a pep talk??) I appreciate your offer of support and hope that I can offer some to you, too. Hang in there, and again, thank you for being there!
  9. @Pistol - thanks for that info! I am just hoping that this is not some sort of heart issue. It’s enough dealing with the dysautonomia! Yes, the low BP is just debilitating. I have tried a number of meds over the years (Florinef, Midodrine, Ritalin, Northera) to get the BP up, but have found that it’s like flogging a dead horse, if you’ll pardon the metaphor. These meds do indeed raise my BP for a bit, but I feel wired and tired, and inevitably crash very badly as they wear off. It’s just like drinking too much coffee and paying the price. So I have always done the “home remedy” approach instead, even though it’s sometimes not very effective: compression socks, lots of water, high salt intake. I am now wondering if the salt and fluids could have been the reason that these echos showed the increased atrial pressure, and whether I should reduce them!
  10. Thanks for that info, @Miraclemaker11, and a happy Thanksgiving to you too. I hope that the Florinef (and/or licorice root) is helpful raising and sustaining your son’s BP. Keep us posted!
  11. Apologies in advance for this long post: I am feeling worried and was hoping to get some feedback on the following! I have been feeling absolutely wrecked all fall: more fatigued than usual, and consistently extremely low BP. I used to "perk up" a bit in the early evening, with BP readings around 96/65, but lately I seem to be in the mid-80s/mid-50s. In addition, I've had several episodes where I am especially dizzy and weak, and I feel like I am "lurching" even if I am sitting still - like a sudden tipping feeling even though I haven't moved. I went to the cardiologist today just for a long-overdue followup to an echocardiogram that he ordered, and he pointed out that my last two echocardiograms (taken just over a year apart) both show increased atrial pressure in my heart. It's not consistent: one (two years ago) showed increased RIGHT atrial pressure (11-20 mmHg), with left atrial pressure at 8-12 mmHg, and the more recent echo (about 6 months ago) showed increased LEFT atrial pressure (15-22 mmHg) and right atrial pressure at 6-10 mmHg. However, this more recent echo report does say ""No evidence of pulmonary hypertension." The cardiologist had ordered the echos because my EKGs always come back as abnormal, with a "low voltage" reading every time. The cardiologist said that the low voltage EKG suggests there is fluid on the heart, and that the atrial pressure might support that finding. He did say that this might suggest that I have a "problem with the heart muscle," and when I pushed him to clarify, he said it could suggest "reduced diastolic function." However, he said he normally sees this with high BP readings, and that he would "have to read up on it" as he wasn't sure what these findings mean in light of my dysautonomia. (I'm actually v grateful to have a doctor who is willing to admit he doesn't know something!) He didn't seem overly concerned, and said he would see me again in 3-4 months. Naturally, I came home and consulted Dr. Google, and feel a bit freaked out, because the "reduced diastolic function" seems to suggest a heart failure problem. I'm wondering if people with dysautonomia tend to have increased atrial pressure, or if they are entirely unconnected? Is anyone familiar with increased atrial pressure? Many thanks in advance!
  12. Just throwing this out there in the hope it is useful: I have terrible dark moods if I take even low doses of drugs like clonazepam (that includes Valium and etizolam). I tried all those to help with sleep, but consistently woke up in an angry, depressed, and agitated mood that lasted for some time the next day. I did a bit of research because that seemed so unlikely, given that those drugs are supposed to have a calming effect, and learned those mood-changing side effects are not that uncommon. I am not second-guessing your medication decisions for your son, of course! I know everyone reacts very differently to meds, and you will know his needs better than anyone — but I just thought this info might be useful.
  13. I have the same symptoms, but have never seen a name for this! Eating seems to trigger hunger, shakiness and low BP, even if I eat small, frequent, low-carb/high-protein meals. I snack all the time - can’t get through the night without eating something (I will feel so hungry that I can’t sleep). (I do eat a pretty healthy diet and am not over or under weight.) I always wondered if it was simply that my poorly-functioning body puts all its limited energy into digesting anything that I eat. For example, if blood is being diverted to digestive organs after eating, it follows that eating a big meal is going to make me feel worse — but I also feel awful if I am genuinely hungry because I haven’t eaten enough. It’s a constant balancing act to make sure I eat enough and the right things, but not so much that I feel rotten from being full. Thanks for posting this!
  14. Many thanks for posting this! You’ve included a lot of really useful info here. My own situation is a bit different, as I have more chronic fatigue/neurally- mediated hypotension type problems, rather than POTS and tachycardia, but it is always helpful to get a detailed, science-based account of someone who has managed to improve. Please do keep us posted of your progress and any other discoveries that you make!
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