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targs66

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About targs66

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  • Birthday 06/02/1963

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    Female
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    UK (but from US)

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  1. 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!
  2. hi bombsh3ll - Always glad to see a doctor on here, though I am sorry that you have POTS! To answer your question- I would differentiate between what I think of as "brain fog" and a presyncope feeling: my brain fog is a near-constant exhausted feeling like I am half asleep, with an inability to "jolt" my brain into wakefulness and functionality. (That last sentence took about six tries, for example.) Focusing for anything more than a few minutes is impossible. I have trouble processing what people are saying to me. I would attribute that more to what has been called chronic fatigue than the dysautonomia, but I suspect that my constant low BP doesn't help. That feels very different than the "uh oh - I am going to faint" presyncope feeling, which is usually brought on by any physical activity or even mild excitement (like a phone call). It's quite sudden, leads to heart pounding and shakiness and then passes - but leaves me feeling depleted and more exhausted. I hope that clarifies the difference? I did have an "MR angiogram" when in the US. Nothing significant was found. I think it was to measure blood flow to the brain by examining the structure of blood vessels(?) I don't know if it's something they would do in the UK! Hope you can find some answers! Keep us posted.
  3. I have never heard of this, but am curious to see if others have found it helpful. I have the same problem with brain fog, even while I am sitting and have reasonable BP and HR! Thanks, and keep us posted, pls.!
  4. Hi and welcome, I would second yogini's comment about considering Florinef's side effects. I know it is a very helpful medication for many people, but I felt very bad when I took it, even in very low doses. I was agitated, shaky and nervous almost to the point of tears, and my insomnia was much worse. My doctor was somewhat dismissive and said it "shouldn't " have those effects, but I tried taking it again and had the same reactions. Just thought this info might be useful for you! Of course his increased emotional problems may have nothing at all to do with the Florinef but it's just something else to consider. I wish you and your son the best and hope he's feeling better!
  5. Hi again @JuliaMaple Yes, I do have low BP. My BP is very low in the AM (80/60) but improves through the day, generally up to about 105/65 at night. My heart rate tends to surge and dip. Coincidentally I just saw a doc the other day, and when I described this phenomenon - that I seem to suffer worse symptoms after anything that raises my BP or HR - he said that he never agreed with the "stimulant" approach because he felt that "you can't create energy from nothing," which I thought was a clear way of explaining things! Unfortunately, it doesn't help in our search for something to improve symptoms. I hope you are having better luck solving the medication puzzle! Keep us posted. all the best.
  6. I've also had blood pressure and heart rate lowering effects from medications that were supposed to have the opposite effects, but that tends to occur for me after a brief time delay. I found that with both midodrine and Ritalin I have a brief surge of raised blood pressure, which is what I am aiming for, followed very quickly (within a few hours) of severely dipping BP and HR. It's almost as if my body uses up its scant energy reserves for the initial surge and then is so depleted that it can't sustain them. Of course, that is my own very unscientific theory and I am happy if someone debunks it with more solid information! I hope you can find a medication that works for you. Keep us posted.
  7. Thanks, Targs, for all your support!  Have a good day!

  8. Thanks, Amyschi. I agree - it is really helpful having all the knowledgeable people on this forum who have first-hand experience with these conditions to bounce ideas off. I'll take another look at your other thread on chronic dizziness. Good luck, and keep us posted!
  9. hi again, with apologies for the late reply! I liked your question, Amyschi, about whether there's really a correlation between the dizziness and low blood pressure, because I've also wondered the same thing. I only wish I knew the answer! There are times where my blood pressure is "reasonable" at about 95/64 (which is not that low for me) and yet I feel at my absolute worst, which makes me think something else is going on. I sometimes wonder if it's just sudden, fleeting changes in either BP and/or HR that make me feel very weak and dizzy - so sudden that they may be hard to catch on a regular BP machine? I don't have POTS (was diagnosed with only having "borderline" POTS) but have been diagnosed with neurally mediated hypotension, so I don't get extreme tachycardia (I'm sorry that you do!). Maybe that's why midodrine and Ritalin aren't that useful for me - although they temporarily raise BP, they may not prevent the sudden changes that make one feel so dizzy. I'm speculating! Again, I hope this is all useful, even if it's just that you've found people who feel the same way as you! Keep us posted on how you're doing.
  10. hi again Amyschi, I didn't respond too badly to midodrine; at least, not the usual exacerbation of dizziness that I get with, for example, B vitamins. I agree with what Yankee Belle said above - the "start low and go slow" mantra with meds works best for me! The only problems I've had with midodrine is that even with very, very small doses I feel better for maybe a few hours, which I'm sure is because of the increase in blood pressure, but then seem to "crash" afterwards with very low BP and heart rate. Taking more midodrine at that point doesn't help; it's as if my very scant energy reserves are used up quickly, and then nothing is going to work. I actually just tried Ritalin recently with very similar results - even at very small doses, I feel a bit energized at first, and then really crash. That's a very different response that I get to things to which I'm intolerant. Anything that has even a mild vaso-dilating effect makes me feel awful not long after I take it, and that includes things that should be helpful, like B vitamins and Co-Q10. I think another category of meds that I can't tolerate may be anti-cholinergics, which includes of all things, Tylenol! Oddly enough, aspirin doesn't seem to bother me at all, but Tylenol and diclofenac make me feel like I've been run over by a truck! Regular Benedryl (diphenhydramine) causes similar problems, but there's a "Benedryl Allergy Relief" sold in the UK that contains only acrivastine, which has less anti-cholinergic effects (if I understand correctly) than diphenhydramine. I wonder if that would be better for you in terms of not making you dizzy than taking regular Benedryl? I believe that all formulations of acrivastine sold in the US contain pseudoephedrine but I've never tried those. Apologies - I've just run on without providing you any solutions, but hopefully comparing symptoms/reactions is useful! best, Targs
  11. Hi and welcome to the forum, I'm also completely intolerant of most medications, including vitamins and supplements. I'm not at all pill-phobic, but have found that even the most benign meds usually make me feel awful. Like you, I'm also very dizzy much of the time, but I don't have UC or other digestive issues. I find it so frustrating! I'll also look at the link Katybug posted. Hope you can find some answers! Targs
  12. I'm sorry to hear of your problems. This is a great forum for information and support! I recently had a nerve conduction test. The docs were concerned about my apparent muscle weakness and pain. The test was normal - while I'm glad that they didn't find anything sinister, I am back to square one trying to figure out what's wrong. BTW, several people told me that the test was going to be quite uncomfortable but I found it completely bearable. At no time did I feel major discomfort. I hope it's the same for you! Good luck!
  13. I'm sorry to hear of your various medical problems. While I can't specifically answer your question, I did want to mention the following: my understanding is that Dr. Pocinki is not taking new patients! I would have liked to see him myself as I have a family member who knew him years ago when they were both working at GW, and she recommended him highly. However, I don't know of anyone who has seen him as a dysautonomia patient. Good luck in deciding what approach to take, and keep us posted. Of course, if you find that I am wrong and Dr. Poco kid will take new patients, please let us know!
  14. I've had a similar situation - numbness and tingling in my left foot, pain radiating up through my left leg and in my left arm, and a definite weakness in my left leg. I have a family history of MS, and felt certain that's what it must be. I've only had one brain MRI six years ago, but based on that they said it's not MS. (I'm currently in the UK and in my experience they do a lot less diagnostic testing than in the US.) I can be quite unsteady on my feet, though it varies with how bad I'm feeling on the day. It's good to hear others here weigh in on all the possible non-MS causes of those kinds of symptoms, although I really wish I knew what was causing this!
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