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@Pistol I couldn't agree more with you! It's crazy how when you (in general) try something new and it seems to work and suddenly you're dragged back down! It is certainly frustrating when it happens. I did everything suggested with the initial diagnosis in hopes of returning back to normal to no avail. I can't remember what it is like to be that normal person I used to be but the new normal is the goal I guess, with little goals here and there. I've been looking for some modified yoga positions as a friend suggested. I had a few falls (putting it mildly) because a vertigo and near syncopal episodes. Ugh! Frustrating! But the search continues for more suggestions! Hope you're doing well! 😊

@Shannoncr Hi, there! Just to start off, I read about all your symptoms and we have very similar issues. I didn't have an eating disorder, though I was super thin (around 94lbs at 5'7" at my lowest, which was beyond my control. Although I was small, there would be moments... days even, that I didn't have any desire to eat. It was like it was a huge burden or type of inconvenience. From what I understand, that isn't unusual for people with dysautonomia and since we are born with the condition, I wouldn't necessarily say it is comparable to an eating disorder. Whether you had an issue or not, this disorder is nowhere near being your fault. It is just there, waiting to take over with sickness or stress, and it will manifest in a multitude of thrilling ways... or it does from my experience. I'm in the same boat with you, either way. The dreamy, foggy feeling you describe; I have always said it feels like I'm not really here and my spirit is walking three steps behind my body, however there is nothing euphoric about it at all! I have cognitive impairment with memory problems just like you as well as the super erratic tachycardia and blood pressure. It is horrid to say the least and I know I'm getting "surges" of norepinephrine with doses of epinephrine, here and there. It is terrifying. I've not been afraid of anything in my entire life. Not only is it terrifying to experience, but each symptom is as well. I also have frequent PVCs as well as PACs. They are benign but it still feels horrible. I'm there with you. I love suggestions from other folks, but it is definitely as individual as the person facing this condition. On the bad days, I do what I'm able to tolerate, otherwise I will pay a hefty price. I'm not sure what works for you, but don't give in. You know how you feel any given day. Sometimes exercise is helpful, sometimes it isn't. Maybe sodium helps, maybe it doesn't, at times. The one thing I found that is consistent is a support system and taking each day as it comes. This site has been a miracle, honestly. It didn't occur to me that other folks had experienced the same things and it is wonderful to hear about how each person deals with the day to day symptoms. At any rate, I hope you find something that helps and if you do, please share what you find! I hope you're doing well! Feel free to message me from time to time to let me know how you're doing! 😊

Hi, there! I game on occasion but mostly old school rpgs and the silly hidden object games when I'm feeling up to it. It's been a bad few weeks as of late, though. I hope you're feeling well! 😊

Hi, there! My EP cardiologist also diagnosed me and insisted I go to a PCP. The problem is that I always used my OB/GYN as my PCP which was allowed by the insurance I carried. So, I went to find a "regular" PCP. I went to one I found through on of the doctors I had worked with before... long story short, the nurse practitioner said I looked fine and sent me on my way. Meh. So, I went back to the cardiologist to his dismay until finally I went to my neurologist from years ago when this mess started. The long-winded moral of the story is finding a physician that actually knows a bit about the disorder and who is willing to help. You won't find may folks that are willing, from my experience, but I hope you have better luck than me. Is there a neurology clinic in your town or nearby?

Hello, all! I want to thank you all for replying, first and foremost. It is an amazing feeling to have some support outside of immediate family, so thank you again. Although I would wish that not one of you had this, it is comforting to know I'm not alone and I hope I can do the same for you all. @Pistol Thank you so much for the input. When you were seen at Vandi, do you recall what testing was provided or any of the labs? It may be too much to remember, I don't know. I'm afraid to even think of what they wouldn't do because of my money issues. It's been a long two years and I've received my second rejection from the SSA. You read my mind. It is an awful, lonely, depressing ride but I know I don't have to tell you. Thank you for everything. I mean that. @Scout Thank you for your reply and input! I don't think that age has anything to do with what we're feeling. It is all very individual but we have some common symptoms that can help each of us along the way. I honestly believe that your anxiety has nothing to do with your episodes or surges! I worked in emergency medicine for over a decade both in the field and in the emergency room. The MDs I knew very well mistook this as anxiety and they knew me! I didn't have anxiety or panic attacks... after seeing three psychiatrists, you'd think they would know; I never got a diagnosis of anxiety or panic disorders. I *know* you can tell the difference, because I can. It just happens and it's not worry or panic. I right there with you, dear. I'm here if you want to talk. It's bad enough having to deal with it alone. @Shannoncr Hi, there! Thank you for your input. I'm also so very sorry you're having to go through this. I appreciate a response regardless if you have answers. Just being able to talk about these things and know someone understands can be such a relief and knowing we have folks out there who sure the burden of this disorder, it brings tears to my eyes. Really. Thank you. To answer the question, I'm not really sure. Dr. Rada (Tri-State Neurology Memphis office) says that Spring time is usually bad for us with symptoms, that they are harsher for us and we will be prone to bad episodes around this time. Winter time is usually better for us, so I've thought of moving to Alaska or the Antarctica. 😊 I made the assumption that it's similar to coming rain to the broken bones or arthritis of some folks. Then again, it is individual and it has proven true for me. If I may, how have you been feeling with this weather change? @yogini That also occurred to me. I ended up in the ER due to the new medication I was prescribed (of course it didn't work as intended) but I'm not sure if it's due to the dysautonomia sensitivity to drugs or what. Believe you me, I'm trying my darnest to find out what is going to make my body and brain happy to make these episodes subside! If I find something that works, I will definitely keep you all updated!! @joiedevivre I wish it were that simple. In February of this year, i went to yet another psychiatrist with a diagnosis of dysthymic depression with a major depressive episode baring all the circumstances in mind, it was appropriate. Like Scout, I can tell the difference between the worry of anxiety and these "surges" though I don't doubt what you're saying... I'm sure I've developed some anxiety throughout the course of this illness, as I'm sure we all have. It is difficult on so many levels! Once I am approved for benefits, I will be addressing that issue and then some! If I may, have you seen a psychiatrist for your anxiety? We're you tested for renin angiotensin, catecholamine levels, etc? I'm just curious simply because MDs can be dismissive at times, not all but there can be other explanations. Thank you for your reply! I really appreciate it! I hope you are all doing well. Keep me posted on how you're doing and please message me if you need an ear! 😊❤

Hi, Pistol! Thank you for the quick response and the input. To answer those questions, I couldn't tolerate the sodium tablets for long, so I upped the salt at my meal time. You are most definitely correct with the small meals and my neurologist warned against it. It is strange you mentioned the GI issues; I've dealt with gastritis with a GI bleed last November. When I was give fluids a few days ago, I did notice a drop in my blood pressure after it being up so high. I'm trying to keep hydrated and resting, though it's been difficult. I try to stay busy with some sort of chore or another, so that's off the agenda. If I may, do you have serious cognitive impairment when your episodes happen? I feel like I've been drugged and there is nothing euphoric about the sensation at all. This has been a nightmare. I am currently working with an attorney to see if I may qualify for a grant to be seen at Vanderbilt. Something's got to give. This is no way to live at all. Also, how long did these episodes last with you? Was it chronic? I'm glad you've found a way to treat it!

Hello, all. Just to start, I am a 39 y/o female diagnosed with dysautonomia-POTS as of June 2016, finally after multiple hospitalizations and MD office visits. The doctors all suspect that it's been present all my life but I have managed to compensate until recently. It started out with the typical tachycardia (140s to 200s) with hypotension, syncope, vertigo, etc. For whatever reason, the symptoms would resolve and I lead a normal life until now. Like most of you have said before, I have good days as well. However, recently things have changed to a different phase of this dysautonomia journey. I think I've graduated to the hyperPOTS or something else, I don't know. At first, I noticed my weight going up (over 9 or more months) slowly... I was about 126 lbs (57.2kg) at 5'7" (170cm) to 142lbs (64.4kg). I'll grant you that physical activity was definitely limited due to intolerance as well as the syncope, however, I generally only eat once a day, at most one meal and a snack. I cut sugar out of my diet, most dairy. So, being that I was pretty tiny most my life, this came as a surprise even with the inactivity because I was naturally lean. That isn't the disturbing part, just where the changes started. Just as background, I am currently fighting for disability benefits, so I have not worked in two years because of my doctors' orders. I have lost everything in the meantime, except the weight. 😑 In the past few months (about 7) I noticed the "surges." Even with my background, I've not been prone to anxiety or panic attacks. This was out of the blue, without warning, and with that feeling you get after someone nearly t-bones you in the middle of an intersection, but worse. Not only did it feel worse, but it lasted a lot longer... maybe 5 minutes plus? Then it would go away. The feeling was accompanied with an accelerated heart rate but not terribly impressive, I'm sure due to the beta blockers I'm currently taking (propranolol 10mg TID). My blood pressure would be fine, O2 saturation was unremarkable, etc. It happened with little regularity that I just ignored it when it passed like most of the other annoying dysautonomia related things we all experience that isn't fatal, but feels like it is. I often joke that when I die, it'll come as a surprise. The impending doom feeling with obvious physiological symptoms have been present for years. Now to the new phase of the illness. I went to my EP cardiologist in March of this year and noticed my blood pressure was up (136/82 or something like it) when normally it is pretty low. I expressed my concern, but he was dismissive like he predictably always had been. From that point on, I started monitoring it more closely. When I got home, it was lower and in a normal range for me, so I chalked it up to being in public. Since I've been ill and not working, I don't get out much, so some social anxiety is there. Paranoia about my illness and appearance (purple skin, tremors, sweating, possible syncope, etc) is the main reason. At any rate, I continued to watch and noticed later a disturbing trend of hypertension with some of these bizarre surges and some without them. My pressure has been all over the place, dropping to some serious lows (80/45) to equally disturbing highes (160/100). I have never experienced hypertension in my life. I've been to the ER a couple of times (once for adverse reaction to new meds prescribed by my neurologist) in the last week because my pressure wouldn't lower, even with bed rest and sometimes it would be just diastolic elevation. I try to stay calm and rational but with these surges (I think may be NE) it is enormously difficult. I haven't moved from the bed today and the surges continue, with hypertension I'm sure but I've chosen not to monitor it today to give the anxiety a break. I know it doesn't help. My neurologist has assured me that Spring time is a rough time for any of us dealing with dysautonomia. The problem I have is that this is a new presentation for me. I don't have the money for extra doctors or tests, so I have zero idea what is going on and I won't get answers until I am approved for SSDI. In the meantime, I worry about my kidneys, brain, etc with all the bouncing around. My headaches get so bad that it feels like the top of my head is about to pop off, my eyes feel like they're coming out, and the roof of my mouth wants to cave with all the pressure. I noticed some people expressing the same symptoms along with the increased urination, insomnia, surges, anxiety, etc but no one has an official diagnosis? I'm curious what everyone else is going through. Did any of you "graduate" from orthostatic hypotension POTS to hyperadrenergic POTS? If an physician is reading this, is that even possible? Also, how is everyone coping with this? I am barely able to tolerate going to the bathroom. It has gotten really bad for me and I hope some of you will share your thoughts and experiences. I'm at the end of the proverbial rope. Help! And thank you for your time and attention! Be well!