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Everything posted by outofadream

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. @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!
  7. 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!
  8. 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!
  9. 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.
  10. Thank you guys, I really appreciate it.
  11. 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…
  12. 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) 😕
  13. @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.
  14. @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!
  15. 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.
  16. I think these are awesome victories! And frankly inspiring, knowing how much it takes to make them happen.
  17. Thank you @Pistol for the advice on the holter, I hope it tells them something about all this. Yeah, they told me that the tilt table showed vasovagal syncope as well as POTS too. I hear you on the usual suggestions never helping much...in the past I think I got some benefit from the beta blocker and compression, but during this relapse, nothing so far seems to be making much of a difference. The very wishes to you too, I definitely hope you get more relief from all of this!
  18. Thank you Pistol, I truly appreciate all your thoughts and insight. It sounds like you've been through a heck of a lot with it over the years. This is part of what I've been trying to tease out...I'm not sure yet if my hr is high and THEN dropping, or if it's low the whole attack. I've never been sure of my POTS type, but had a similar experience with tilt tables years ago...they told me hr and bp rose, then dropped like a stone (fainted both times). They have me on a holter now, so I'm hoping that might shed more light on whether that's what's happening now too. Thank you gertie. I definitely hear you on the fear, it's such an awful feeling and very difficult when you don't know when it will hit. I hope you get some relief too.
  19. Hey DizzyGirls, just been thinking of you and your girls and wanted to check in. Any luck in finding a good beta blocker that's working better for them? The movements do sound really similar (the flailing ones in particular...those are tough!). I think I've had that too where the overload gets so bad it's like the world stops...just freeze, can't talk for a brief time, etc. I sure hope the cardio has some ideas, I know it's got to be hard to cope when there's so many potential triggers!
  20. I'm so sorry it progresses to such a bad level Pistol! It sounds very challenging and miserable to have to deal with I've been on a beta blocker for years, but the doctor never seemed to feel I was a good fit for fludrocortisone or midodrine. My typical POTS symptoms in recent years have tended more toward stubbornly high heart rates and relatively stable bp, so that was working out..at least, until these attacks started up a few months ago. My neuro and I are still trying to work out what med adjustments or even a different med to try now. If you don't mind, I'm curious what your heart rates are like during your attacks? During the worst of the attacks, I noticed mine seemed to be sitting at normal and wouldn't come up in the situations that usually make it go through the roof. Sometimes, it even felt like it was suddenly dropping. Is that what you tend to experience as well?
  21. I definitely appreciate the suggestions, Pistol. I just don't understand these spells. Some of them seem to be set in motion by things that could well trigger a vasovagal response, but once it gets going...it's like it doesn't want to stop. I'll get waves of this intense lightheaded feeling for the next two solid hours. I've tried drinking cold water, lying down, etc, but those only seem to make it worse. The only things that seem to help at all is sitting back and tightening my legs and trying to get the accompanying stomach upset to calm down. And even that doesn't necessarily shorten the attacks or help much.
  22. Hi DizzyGirls, I wondered if you would feel comfortable saying more about the sensitivity and movement symptoms your girls have been having? The reason I ask is because a couple years ago, I developed bouts of very strong sensitivity to things like light touch or sounds, and also some intense jerky movements. I spoke to my neuro about both, and he hypothesized that increased adrenaline was overstimulating my nervous system, leading to the sensitivity and possibly "spilling over" into the movements. I don't know if that would relate at all though, since mine wasn't triggered by a change in beta blockers. I'm sorry your daughters have been going through such a hard time both in finding a med that works for them, and facing such tough neurological symptoms I hope you guys get some better answers and relief soon!
  23. Hi Aida, I'm so sorry you're dealing with this. I can relate strongly to that feeling of floating (I felt like I was on a tilting boat and couldn't get off). I had to walk holding onto the walls when it was acting up, and it also seemed to happen regardless of what my stats were like. Mine seemed to track very closely with how bad the POTS symptoms were though...it actually improved significantly over time (although now that I'm having a POTS relapse, it's more noticeable again). One doctor suggested vestibular rehab might be of possible help, although I didn't get the chance to try it yet. I'm also curious whether your neuro ever thought any kind of vertigo or balance testing might be helpful in pinning it down?
  24. Hi bombsh3ll, thank you a lot for the thoughts. I'll definitely try the cold water the next time it happens, it's really good to know there's strong evidence that helps! I'll give elevating my legs another shot too. I can understand being extremely frustrated with how limited the advice seems to be when it comes for dealing with presyncope... it's such a miserable experience to keep having.
  25. Hi all, it's been awhile. I've been having these nasty spells where I start to get that definite and strong presyncope feeling and turn white as a ghost, but if I lie down...it doesn't seem to get better and often actually seems to intensify. If anyone else has experienced this, has anything helped you? I know usually they tell you to lie down if you feel faint, so I'm at a loss as to how to manage these attacks better.
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