outofadream

The mood swings have been one of the hardest symptoms to cope with, in all honesty. I’ve long wondered if it correlates with adrenaline for me. When the adrenaline seems to be running high and my hr is up, I get edgy or irritable, or impending doom if it’s a big surge. The worst though is the crash that follows after exertion or an adrenaline spike. Then I get the most incapacitating feeling of despair. No feeling of hope or joy, just this profound misery. It’s short lived, anywhere from a few minutes to a couple hours, but it’s intense. I’ve had days where every single time I sat back down after being on my feet awhile, I’d crash like that and be in tears.

I tried Lexapro years ago, before I was diagnosed (but I’m very confident I did have dysautonomia at the time, given the symptoms). I can’t say for certain because it was so long ago, but I don’t think it negatively affected my dysautonomia symptoms. That said, like so many of you have mentioned, I was VERY sensitive to it. I think I started on the lowest standard adult dosage and it still caused a pretty strong shift in my mood for the first few weeks (impulsive, couldn’t focus, out of character behavior). I also started to deal with visual disturbances while taking it (specifically visual trails/palinopsia and afterimages), but I can’t say if that was in any way connected. For myself, I wish I’d started on a smaller than usual dose of it and been careful about any dosage increase, just because of that sensitivity and my history of strong/eccentric reactions. I know everyone’s very unique in what they need and how they react though. I definitely hear you, it’s tough when you want to try something that may help but are also facing the risk of a worsening. I really hope you find the answer that’s best for you!

@PistolI think I know what feeling you’re talking about, and that was always such a disorienting experience. I always did wonder if my unsteadiness had to do with blood flow shifts too. I hope you finally got relief from it!

Hi Bailee, I’m really sorry you’re going through that. When I was having really bad pots symptoms some years ago, I had a constant feeling of unsteadiness and like the room was slightly turning all the time, even when my stats were fine. It was definitely one of my most difficult symptoms and I found it hard to walk around as much too. I went to see both an ent and a couple neuros, but we never found a definitive cause for mine. I do believe for me it was a pots symptom because when I experienced improvement of my other symptoms, that vague sense of vertigo got better too and finally went away. Every time I have a significant relapse it comes back as well. Very carefully increasing my activity did seem to help over time. The ent also recommended to go in for vestibular rehab, and I always wished I could have gone, because I wonder if that would have gotten me better faster. I really hope you can get to the bottom of yours since I know there can be a lot of causes. Sending empathy and support your way.

Hi, I think I might know what you’re describing. When my brain fog was at its worst, I felt incredibly disconnected from the world or my own body, like I was just observing myself or wasn’t within my own body. It felt a lot like depersonalization/derealization. I’m really sorry you’re experiencing that too, I always found that symptom hard to cope with. Sending kind wishes.

Hi Bailee, i don’t have an answer, but I do think I can relate. I feel like when I’m exercising I can keep a smoother and steadier pace than when I’m walking outside/in stores, which seems to help. Also, when I’m out and about, it takes more energy processing the sensory overload, dealing with heat/temp changes, thinking about where I have to go and what I have to do, etc, and all of that can drain my energy faster. I don’t know if any of that resonates with you too? But I do certainly hope you find the answers you’re seeking, and some relief.

@Pistol I’m so sorry you went through all of that, especially back to back like that! I’m really glad you pulled through, and I definitely hope that recovery does continue for you. @DysautonmiaMatt I’m sorry you’re caught in the cycle of repeated flare ups, I know that’s incredibly frustrating. I get what you mean too about never knowing quite where it’s coming from, whether it’s an after effect of Covid or something else. I just hope it does level out for you. @MTRJ75 I hear you. I feel like those of us with dysautonomia understand better than most how significant those kind of long term complications can be, since we do live with so many difficult symptoms all the time. I agree that awareness is really important and I’ve shared that frustration, for what it’s worth. @JennKayI hope you feel better really soon! I know fevers can be terrible for hr and palpitations. I’m sorry you went through so much with Covid already, and that must have been a tough time dealing with the prolonged qtc in March. Again, sending care and hopes for relief for you soon.

I know this post is very old, but if you see this, thank you guys for weighing in. It meant a lot to know I’m not the only one going through the emotional aspect of the crashes, although I’m so sorry some of you experience it too. I hear you on needing more people to be there and to truly empathize and understand. I’m so sorry you were feeling that pain too; I know how much it can hurt. In case you do see this, sending a lot of gentle support and care to you. I truly believe you all deserve that care and people to genuinely listen, so much, and for what it’s worth, I hear you.

For those of you who already had dysautonomia before the pandemic started, I’m really curious about your experiences with Covid. Did you mostly recover or did it lead to a longer flare/relapse or new issues?

My friend wanted me to pass on a huge thank you to all of you too. Your experiences seemed to give her a lot more hope and confidence going forward, and she was so grateful for your compassion and kindness too.

I’m wondering if anyone else can relate to this experience. When I overdo it or if the POTS gets triggered in a bad way, I’ll often crash afterwards and get about the symptoms you’d expect… fatigue or weakness, worse brain fog, sometimes vertigo/lightheadedness, etc. But it sometimes also seems to make me feel very grey or low emotionally too. Or it’ll make me cry, even if I don’t feel sad per se. In a bad crash, it’s literally like someone has sucked all the joy and hope out of life altogether, and it’s a very hard experience to get through. I'm pretty sure it's not just a reaction to feeling bad either; the emotional crash can be terrible even if the physical symptoms aren't as severe and vice versa. I’ve always assumed the feeling is somehow related to the high levels adrenaline dropping off, because it ALWAYS follows either physical exertion or the bad attacks where my body is really fighting to hold off a faint. On the bad days, it’ll happen multiple times throughout the day, always within a few minutes of being up and walking around. If any of you can relate to this…has anything helped you prevent either the crashes or deal with that emotional aspect that comes with them? It’s extremely hard to keep feeling this way so often.

Thank you guys for sharing this. I've always found some of the mental/emotional symptoms to be some of the hardest too. With the adrenaline surges in particular, I often get that intense sense of anxiety, ranging from this unease I can't shake to complete impending doom. I can relate to that feeling like you're trapped too. I know how unbearable it can be to keep getting those surges over and over, like living on a roller coaster. Beta blockers really helped level those some for me, but still get them a fair amount. I hope you guys are getting any kind of relief, and sending support your way.

Thank you all so much for your thoughts on this. It's truly appreciated. It's been hard to help her because I'm living at a distance, but like so many of you...I remember a little too clearly what it was like to be in that state of not knowing what's going on. It breaks my heart still and makes me angry hearing what all of you had to go through with this, and to see her going through something similar. Seriously, thank you for your kindness and taking the time to share your thoughts...it means so much.

Hey all, I have a friend who’s been struggling terribly with a huge decline in health over the past few months, and I’m trying desperately to help her find more answers, or at the very least more support. To be clear, I don’t have any reason to suspect she has dysautonomia (which is why I’m posting here instead), but I know so many of us went through those long struggles with being undiagnosed and struggling to get a doctor to listen, and that’s where she’s at right now. She’s been passed around between a huge number of doctors, and feels like no one is doing anything or putting together the whole picture. Knowing how many of you went through that or are going through that…was there ANYTHING that helped that process? She gave me permission to share that for her, everything seemed to start soon after she began steroid shots for back pain. She started getting a lot of stubborn infections (which makes sense, given how steroids affect the immune system), but it then branched out into a ton of undiagnosed mouth sores/swellings/lumps etc and an increasing number of systemic symptoms (extreme fatigue, nausea, aching, chills, that kind of thing). So far, no one seems to have any idea how all those symptoms hang together or what’s going on there, and she’s pretty scared. I am not looking for a diagnosis or medical advice but rather how to navigate through the medical community in a case such as hers.

@Pistol I've been wondering if a nutritionist is a possibility. That's interesting about the gingerale, I think I'll try that and see if it makes any difference! I did try elevating the head of my bed. I think it helps slightly (and the lying on the left side rather than the right). Seriously, thank you for sharing all of this. @bombsh3ll That's fascinating about beta blockers! I always wondered what the mechanism was behind the cold hands, since that seemed like the opposite effect to what one would expect. Now it makes sense. It's an interesting thought about the Zyrtec too. Again, thank you for all the info!

Thank you all so much. It's especially helpful to know there's some hope it could still improve. @KiminOrlando I'm so sorry you had to deal with the reflux after drinking water too! They actually tested me for gastroparesis maybe 4-5 years after the POTS/reflux issues started, and it came back clean then. They did find abnormally slow small bowel motility though...the doctor didn't seem to know if that was significant, because I don't really have the symptoms they would conventionally see associated with that. But if there is some dysmotility, I have wondered sometimes if that could be adding to the reflux issues. @Pistol, that sounds like a nasty combo all right I'm really glad you got some relief! You have hyperPOTS right? I have wondered if there's some link with adrenaline for my heartburn issues, but I'm not sure. Carafate really helped in the past too. The problem at the moment seems to be that the acid is making it into my throat, and the Carafate doesn't coat high enough to stop it. Gaviscon helps more with that, but I need to find a better way to take it long term (the version I've been using isn't really supposed to be used indefinitely). How did you find out that the raw fruits and veggies were making your symptoms worse (or that avoiding them helped)? I really appreciate all the info! @bombsh3ll I have a feeling antireflux surgery or other related procedures probably aren't an option for me either, although I'm planning to ask my doctor to be sure. I'm assuming you haven't run into any other non-drug options? The PPI's have certainly helped, but I'm still just having so much breakthrough on them. I do also worry about the long term side effects, but I also know going off of it may just not be an option for me either. It's a good question about the other meds...I'm not on fludrocortisone, but I've suspected a couple of them (mainly the magnesium and beta blocker) are making it mildly worse. Really, though, it was bad even before I started any of them. The only one I've really wondered about is actually the allergy med, of all things. For some reason, within a short time of starting that, things took a turn for the worse. I've just never heard of zyrtec causing heartburn though, so it may be completely unrelated. Either way, I really appreciate your input!

I’d desperately like to know if any of you who have very stubborn acid reflux have found anything that truly helps you, and if so, what? I’d also be curious if treating your POTS ever helped with the reflux as well. My POTS symptoms and heartburn symptoms started at exactly the same time, so I’ve always assumed they were related somehow. The pain and miserable acid taste have just been so frustratingly stubborn over the years…it happens multiple times every single day, and many days even the simple act of drinking water sets it off. The only time it shuts up is when I sleep. So, I’ve been on PPI’s (as well as H2 blockers and antacids) for many years now, which is NOT what I wanted. Yet, every time I try to taper down, the rebound is so severe that I absolutely can’t function within a day or two. I know too that there are risks with having heartburn for so long, which weighs on my mind a lot. So if there’s anything that’s genuinely helped any of you, I’d really like to know!

They've occasionally clocked it spiking into the 170's-180's at the doctor's, just standing and walking around. The doctors who knew about POTS didn't seem at all concerned about it, except to remark that they would certainly like the tachycardia to be better controlled (the ones who weren't familiar with POTS freaked out a little). I think the highest I've seen at home is probably more like 150-160 and generally isn't sustained.

Thank you guys, I really appreciate it.

For those of you who’ve been in before for an endoscopy, esophageal manometry, and/or ph probe test…any tips, advice, or even just reassurance for getting through these? I’ve been out of my mind nervous. The POTS has been fairly unpredictable lately, so I have no idea how it will react to the sedation or anything else that might cause vasovagal reactions/bp or hr weirdness 😕 Not to mention I’ve heard some of these can be pretty unpleasant and challenging to get through…

Hi Bombsh3ll, I wish I had more to offer here. My neuro really wanted me on the combined pill to try to smooth out the POTS ups and downs, and my gyno wanted me on it because I also have PMDD, where the hormone swings cause nasty recurrent bouts of depression. Unfortunately, I seem to be spectacularly sensitive to hormones, so I never have found one that works well for me. For some reason, the lower dose ones all ended up being particularly bad (ones like Microgestin or LoSeasonique/Amethia Lo). I think they lowered my bp some and definitely seemed to cause worse symptoms (extreme tiredness, dizziness, brain fog…and depression, for added fun). The really high dose one (I think it was Ortho Tri Cyclen) didn’t seem as hard on the POTS, but unfortunately wrecked my stomach and mood (was waking in the night with acute nausea, and the mood swings were intense). I did the best on the somewhat higher estrogen, three month pills (so, like Amethia/Seasonique), although even then the lightheadedness/fog/tiredness were noticeably worse for the first month or so before leveling out. Overall, the POTS also seemed to have a decline while I was on it and for the first few months after discontinuing, but I have no idea if that had anything to do with the pill or no. I tried Nuvaring too..never noticed any negative effect on the POTS while on it, but no real improvement to anything either. I would hazard a guess that overall, the higher dose ones did a better job of helping me retain fluid, although I'm not absolutely sure about that (and they have their own risks...I get migraine auras, so they were pretty nervous about having me on it). I always seem to be on the extreme end of reactions when it comes to anything hormone-based, though. I hope you have much better luck and find something that really helps! (PS, I wasn’t sure where you were from…the brand names are what they’re called in the US, I’m afraid I’m not sure what they would be called somewhere else) 😕

@DizzyGirls Hope the cardio has some good options for your girls! That's brilliant that you made sure he'd done his homework ahead of time and was prepared, haha. It makes me so frustrated that everything the medical profession doesn't thoroughly understand yet they ascribe to something psychological. It's so terribly unscientific, not to mention harmful and disrespectful to everyone involved. I can imagine how you must have felt when the doctor said that, I'm sorry you and your girls had that experience (and you as well @Pistol, especially with everything you went through! I'm glad you got access to the IV fluids and they've helped!) My issues for the moment are being defined as a "functional movement disorder," which basically means "something isn't working right, but we can't see it on any kind of scan." They did an eeg on me a well to try to rule out seizures, and that came back clean. I kind of got the sense that movement-related issues are a field that there's still a lot unknown and more research is really needed. And there are a lot of downright shameful assumptions. Even the doctor who diagnosed me made an off-hand comment that maybe it had something to do with the "stress" of living with a chronic illness (she also didn't know anything about POTS, which probably didn't help). I've noticed my movement issues are often worse after being up on my feet awhile, which certainly seems to suggest there could be an autonomic connection somewhere (and I think my POTS doc suspects there could be one too). I really appreciated you mentioning the video...anything that clarifies how this all hangs together is helpful! But mostly, I hope your cardio has some good selections for beta blockers lined up for your girls and that they get some relief very soon Will be thinking of you all, and please do keep us posted.

@Derek1987, I can certainly relate to the misery of the BP swinging up and down. I haven't gotten a good reading during the worst of the recent attacks, but in the past, my bp often seemed to swing back and forth when I had a lightheaded attack. I'd take one reading and it would be low, a few minutes later would be high, and that would repeat. I suppose that does explain why I get the lightheaded feeling in waves (presumably every time it does a short but significant drop). Then again, I've never noticed the strongest relationship between my vitals and how I actually feel overall. I can sometimes feel terrible even when they're perfectly normal and at least passable even when my bp is a little on the lower or higher side. I hope you're having better luck smoothing out yours!

I've gotten the shot for years without it seeming to have any effect on my POTS symptoms. The one possible exception was last fall. In retrospect, I think I was coming down sick with a sinus infection/cold the day I got the shot, and didn't realize because I didn't have much in the way of symptoms yet. The night after getting the shot, I spiked up a 101 fever with body aches and generally feeling terrible. I assume my immune system kind of went into overdrive between reacting to the shot and fighting off an illness, and hence the strong reaction. I felt a lot better by the next day (except for the regular cold/sinus infection symptoms, which ran their course about a week later). The only reason I mention this is because I did notice a worsening in my POTS symptoms around that same time. It's very possible the POTS symptoms were already getting worse (and were completely unrelated to the shot), or it could be that because my immune system was really revved up, that set something off. I have noticed that while minor illnesses and shots don't usually seem to cause me any issues, if I'm sick for an extended period of time or with something more serious, I've sometimes had some weird and erratic symptoms awhile after that.

I think these are awesome victories! And frankly inspiring, knowing how much it takes to make them happen.