Delta

Hi, @albertspa! Your post is interesting! I do believe you're on to something, as I have experienced very similar. Although I was not diagnosed specifically with hyper POTS, just POTS, I believe I have the hyper variety based on symptoms. I have noticed that my brain fog significantly improves when I am having a lively conversation with someone, where there's a lot of "give and take", or a conversation in which I have to think. An example of the latter would be when I have had to call someone about a business matter or, say, a question about a bill I received. Or, as you stated, "laying out a logical argument". And the effects are long-lasting, pretty much for the whole day. And yeh, I have attributed it to increased blood flow to the brain. Exactly how the physiology of it works is above my pay grade, but I've noticed it enough times that I know it wasn't coincidental.

Hi,@bro123, Right here! Would you believe I could never get mine on? They were actually compression tights and I was professionally measured by someone at the place through which I purchased them. I know the measurements were correct because I looked them up . . . but . . . I barely managed to get them up to mid-shin. Once I got started on meds (beta blocker), I didn't need them. I keep them in my closet in case I ever do need them. (Knock wood)!

@MomtoGiuliana, @Pistol, @Shiloh, @bizbiz, First off, thanks very much to all of you for responding to my post. I've realized a couple of things, although they don't really tell me what happened. First, I was trying to figure out why I did not notice this coming on sooner as I was walking and I realized it came on suddenly. There is an abacus-looking thing that my husband made - it's attached to one of the outbuildings that I pass on my walks around the pasture. This is so I can keep track of how many times I go around. When I walk by, I move a "bead" (Don't laugh - it's easy to lose track when you're listening to good music and walking briskly!) And what I realized was that no more than two minutes before this episode happened, I had walked by and moved a bead with my right hand/fingers - no problems! So within that couple of minutes, my right fingers/hand decided to get wonky. So I think that's a "clue" - I just don't know to what! Second, I've been out in colder weather for longer than 40 minutes and nothing like this has happened. Granted, I was wearing more clothes then, but I don't believe a T-Shirt and capris was inadequate cover for temps in the high 50s, especially since I was constantly moving. I didn't feel uncomfortable at all while I was walking. No issues on yesterday's walk (low 70s in early AM) or today's (low 90s, late afternoon/early evening). I think I need to wait until the next morning with temps in the high 50s, and see if it happens again. @Pistol - We did notice that both of my hands were very pale, no pink. We didn't see any blue tinge. But yikes, no, it didn't occur to me that something like my neck might be involved. You are right that it is easy to assign new symptoms to a known condition when they could be caused by something else. I will definitely be bringing this up with my POTS doc, and my primary. I will post again when I have updates. Thank you all again for responding to my post!

Hi, all. I hope everyone is feeling good today. I'm hoping for some input on the weirdest thing that happened this morning, and am trying to figure out if this is POTS/dys-related. It hasn't happened before. Every day I take a 40-45-minute walk around our pasture. My walk is a little over two miles total. So I took my walk early this morning when it was cool - high 50s around here this morning. When I was almost done, I went to fiddle with my iPod, which I was carrying in my left hand, and discovered that my right hand would barely work. Fingers didn't want to bend. I went to lift up my right arm, and it felt heavy; it did not want to go up. Kind of like when your arm "goes to sleep" after you've slept on it, but no tingling, needles-and-pins feelings. Okay, so now I think I'm having a stroke. I started feeling a bit fuzzy-headed, but I don't know if that was just because I was starting to get a little scared. I went straight to the house. By the time I reached my husband, my left hand was starting to feel the same way, but not as bad. Husband noticed both hands were very pale and hands and arms very cold. After maybe 15-20 minutes, I was back to normal. Hubby thinks circulation got messed up because it was cooler out than I was used to and only wearing a short-sleeved T-Shirt, and cold constricts. Has anyone experienced anything like this? Usually any temperature-related POTS symptoms I get happen when it's too hot! I will definitely mention it to my POTS doc, though. It was scary.

Hi, @albertspa, Before I was diagnosed and prescribed meds (a beta-blocker) five years ago, I noticed that my symptoms were much better, if not completely gone, at night. Next morning, get up, same old song and dance. What I figured out, and there has been some discussion about this on this forum, is that a lot of POTS symptoms come from inadequate blood flow. When I was up during the day and moving about as best I could, it was helping to get the blood flowing; I was basically exercising as I (tried to) go about my daily life. So by the end of the day, I felt much better. But then, while I'm sleeping at night, there's not much physical activity going on and I would wake up with the worst brain fog and other symptoms. And the cycle would start all over again. Feel worst in the morning; much better at night. I haven't noticed much difference in symptoms vs. the weather, at least not consistently, other than heat makes things worse. Something I did notice is that since I started walking for 45 minutes daily - it's the same route; a little over two miles - my tolerance to heat seems to have improved (!!) BTW, I do believe that I have the "hyper" variety of POTS based on my symptoms, although the doc (neuro) who diagnosed me didn't say that; he just said, "You have POTS". Also, another thing I think helps me is that we have an adjustable bed and, with my doc's OK, I elevate the foot of my side of the bed just a few inches. I think that, along with the meds, has helped with the brain fog. Good luck - I think you will find a lot of good information and helpful people on here, as I did!

@Pistol Thanks for posting this! It really is intriguing - I am going to mention this to my POTS doc at my next appointment. I really am curious as to whether anyone else with issues similar to mine has had the same experience!

Hi, all, I have a question relating to my reactions to MSG (monosodium glutamate) as relates to the med I take for POTS. Typically, if I eat something that contains *added* MSG (not something in which it occurs naturally), I will get what I call the "MSG Trifecta" - extreme sleepiness, thirst that makes me need to drink something carbonated to feel a "burn", and a mild headache around what feels like the outside of my entire head (I call it an "eggshell headache" because the way it feels reminds me of when I crack a boiled egg and the crack shows around the entire egg, but doesn't go deep). My husband gets these same symptoms after consuming MSG. Obviously we avoid eating things with added MSG. But, what I've noticed is that over the past year or so, I've eaten a few things that I didn't check at first that turned out to contain MSG. My husband ate these same things at the same time, and got the usual symptoms, but I didn't! This has happened at least three times now in the last few months. The first time I thought it must be a fluke, and that maybe the product had even been mislabeled. But now I don't think so, because my husband got the same symptoms, as usual. So, what I'm wondering is - is there any chance that the beta blocker (Propranolol) I take for my POTS might be keeping me from getting those symptoms? Has anyone here experienced anything like this? Thank you for any comments!

@JennKay, Hello! Sorry for this delayed response; I haven't been on here in a few days! I believe my Propranolol is normal release, because it's not a capsule, it's a small blue pill (Actually a scored 20 mg. pill that my doc wanted to start me on, but I asked if I could start with 10 and move up if needed, so I just get the 20s and break them in half). Every time I've read about propranolol extended release, it referred to capsules, and this is definitely not a capsule. I take it early in the morning, a couple of hours before I get up for the day. Usually I manage to wake up somewhere between 3:30 and 5:00 A.M., so I take my pill then - I keep a glass of water next to the bed - and then roll over and go back to sleep. By the time I get up, which is usually between 6 and 7 AM, the pill has been on board for a couple of hours already. Honestly, it started working for me almost immediately (KNOCK WOOD!!)

Same here. Hoodie on; hoodie off; repeat! I do notice that when I feel particularly cold and check for a fever (thinking maybe I have fever chills), my temperature is in the 96 range.

@Pistol, Thank you for posting - this, in particular, is enlightening and helps me make sense of some things. You are kind to spend time and (limited!) energy to post helpful information for others when you are not feeling your best. I hope this flare will take its leave of you soon.

@Pistol, I am sorry to hear this and I hope you and your husband/family are on the way to a fast and full recovery!!

Hello, all! I hope everyone is having a good day. I am thinking about getting inked on one of my upper arms. Do any of you have experience with tattoos - has anyone gotten inked after being dx'd with POTS/dysautonomia? I asked my POTS doc, who is a neuro, and he said that from a neurological standpoint, he saw no problems with it. I know to take precautions - stay hydrated, eat enough, and don't have it done if I'm flaring that day! But I'm wondering if the pain or even the ink might trigger some kind of autonomic response/flare. (Never done this before, in case that isn't obvious, LOL). Thank you for any thoughts, advice or experience you'd care to share!

@MikeO, Mama and babies!! Great pics. What kind of apples?

@MikeO, If it involves taters, which I love in any of their iterations, and green beans, I'm all in! Thanks for sharing! (Have you been rummaging around in my kitchen?! We have exactly one "Corelle Livingware" dinner plate in the house, and that is exactly what it looks like)!

Hi,@Knellie, Pepto for me, as well. In the months before I was diagnosed and prescribed meds, I was nauseated Every. Single. Morning. Plus diarrhea. My motto at the time was, "Pepto Bismol - not just for breakfast anymore"! I hope you find something that will bring you relief soon.