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millyaulait

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Everything posted by millyaulait

  1. To fulfill the criteria for a POTS diagnosis I was told that the heart rate must sustain 30+bpm from the supine resting heart rate. If it jumps high from lying to standing but within a minute or two drops under the 30 beat criteria and stabilizes then it's negative for POTS. Have you tried doing a Rich woman tilt table test? You sound like you may have a bit of both conditions. Have you fainted while sitting or lying down? Dysautonomia sure is complicated! I actually can't stay conscious for that long while standing hahah I faint while sitting too sometimes yeah, and at the very least I get OI symptoms while sitting/lying down etc. Oh well, I guess as long as I'm trying out treatments it doesn't matter too much anyway.
  2. Thanks for the replies everyone. It certainly does get confusing sometimes. To be honest I'm not really sure of my diagnosis. My doctor says NCS (had the tilt table etc) but my heartrate shoots up past 30 points as I stand up, as per the pots diagnosis criteria, and all of my symptoms definitely match up with pots. Maybe I'm one of those with both, I'm not sure at all.
  3. Thanks, that makes sense I finally got a reading while standing & it caught an arrhythmia too! My BP rises pretty much exactly to the numbers that a POTS patient is diagnosed by, so I guess that's not surprising but it's nice to finally know for sure.
  4. It's basically a stimulant so if you have anything such as palpitations, fast heart rate, etc it will likely make them a lot worse very quickly. Also you may not sleep/sleep well. There's really no magic pill out there, especially not with high risks, as far as I know. Losing weight is honestly all about the food. Pills are dangerous, IMO! I have tried a ketogenic diet, they really work and I did not feel deprived or have to worry about my heart.
  5. Also, whenever my doctor tests my BP we cant EVER get a reading when I'm standing up. I tried at home too and can't get a reading at all. So this is what I'm wondering about pooling too.
  6. Hi, all. I bought a blood pressure monitor today for obvious reasons, but mostly I'm just testing out of curiosity. I was wondering if blood pooling affects BP readings though. Like, if my blood is going to my stomach for some reason at the moment of testing, will that distort the reading? I've tested quite a few times now but keep getting different numbers. Does anyone else test their BP?
  7. I'm not sure if everyone with POTS/NCS has this issue, but I figured I would ask anyway. The issue I have is that on so many occasions I have quite a lot of difficulty getting a full breath in. This mostly happens when I'm really tired just generally, and it ALWAYS happens when I've been standing up too long or I'm walking around. I fall more into the NCS part of things so essentially what happens is that when I stand up my blood starts pooling in my stomach within a few short seconds, then I start to get pre-syncope symptoms, including my heart beating hard/fast and my breathing becoming laboured. I wonder if it's to do with the blood pooling? I'd love an actual medical explanation, just out of sheer curiosity more than anything. I thought maybe that if my heart is working harder to keep blood "up" then it's sort of like exercise (like if someone goes on a jog, their breathing obviously becomes faster and harder until they rest) and so it's like the same mechanism? But then sometimes I can feel perfectly "okay" and still have a bit of trouble breathing deeply, even if I can breathe slowly. I've checked with several doctors & it's not a muscular thing or anything stopping me from actually breathing properly. Unfortunately my doctors are not really POTS/NCS specialists so they can't answer my questions above. If anyone knows I would loooooove to know, thank you!
  8. I don't know what to do with myself at all. I would say that these past 3-4 weeks have been mentally very exhausting for me. I'm finding it so hard being in my body. On top of my usual Dys symptoms I've started to have memory issues and constant deja vu. I am constantly doubting myself. I can't trust my memory any more. I can't escape my mind. I am only 24. I've been to my Dr & I'm waiting for a neurology appointment, but I just feel so broken. I don't feel like *me*, I feel almost nothing inside any more, sometimes I feel sad, sometimes I feel useless and disappointed in myself. I can't explain it. I just can't escape my sadness or my stupid memory. I can barely type out these words because it seems like such a task just trying to form sentences that make sense. I wish I could talk to someone, but I feel ashamed. Like there's no point. I am beyond repair, a waste of time. I can't deal with having to explain things to people either, "Why don't you do to school? Can't you study? Why can't you walk around? Surely if you just walk a little every day your heart will get stronger and you'll get better! Huh, guess you're just lazy....." I just can't do it anymore. I want to be more for my family, I want to be a normal, healthy daughter. A healthy, happy girlfriend. A friend who can actually go do things. I don't want to worry people any more. I don't want to be this way. I am constantly plagued with the feeling that I am not good enough and I never will be. I will always be broken. I don't know what to do. It hurts so much and I can't escape it. I'm sorry if this post upsets anyone, I just have nowhere else to go. Thank you if you read this.
  9. Thanks for replying, everyone! In a roundabout way I am glad that I'm not the only one experiencing this. Technically there is nothing 'wrong' with my heart, so it's good to see that the Dys is probably the culprit and hopefully nothing to worry about. It's jarring when it happens, but otherwise I guess it's somewhat normal.
  10. It was a sudden virus for me. I was told I would get better after 18 months. Nope. Three years later and I'm as sick as ever.
  11. I've always wondered if this was a Dys-related thing. I have "normal" palpitations quite often, but every now and again I will get this running set of palpitations that last anywhere from 10 secs to 10 minutes, the difference being that they seem to give me a feeling that I need to cough. I have tried simply not coughing, just to see if maybe that would stop the palps, but instead I am absolutely forced to cough somehow. It's like a swelling in my chest just explodes along with the beat (or missing beat) of my heart, and forces its way out of me in the form of a cough or hack. Sometimes after a brief cough the palps will continue for a while after, other times it stops. I'm not really sure why I get these weird cough palps, but I wonder, do you get them too?
  12. Thank you. Wow, It's strange how much experiences can differ so much when it comes to medication. Unfortunately I have found no improvement whatsoever in my symptoms, only negative points. I am on a very small dose but it's making me so sleepy, and the migraines are relentless right now, I thought maybe they would taper off a bit but they are very frequent. :\
  13. Oh no That's horrible, I hope all goes well with your EEG.
  14. Sorry to hear you had the same problems, Chaos.
  15. I think I have been taking Florinef/Fludrocortisone for 6 weeks now. I would say that I am depressed. I have been putting up with the migraines and headaches that it has been causing, but I don't know if I can deal with this severe change in mood. I just feel heavy, clouded. I have no motivation to do anything at all, no desire for my usual hobbies. I just want to stay in bed and not do anything. What is the point in even getting up? I don't feel like me. I feel like I have been mentally covered in weights. I don't have the strength to be me, or to be happy. I almost feel nothingness, rather than sadness. It's only really been this bad for the past week and a half. I'm going to see my doctor in a few days, but had anyone else had this problem? I hope that if my Dr decides to stop with this medication then the depression will end quickly, but I don't know if it works that way.
  16. I feel like I'm having a delayed reaction to exercise. I decided to try and work out on my stationary bike today, I didn't last very long without feeling super tired and weak, but after I had recovered (5-10 min) I felt fine apart from my usual chest pain. But then maybe 15-20m after feeling okay I started getting dizzy and tingly all over. Does anyone else get this? I feel kind of betrayed because I actually managed to work out for once (well, kinda!) and now I feel like my body is saying "What did you just DO?!", haha. I wonder if I should try to cycle again tomorrow? I don't want to make myself worse or anything. Anyway, just curious if this is just a potsy thing, I am still learning all about this stuff and it's always so great to hear from similar people.
  17. LMG, it helps me because for some reason when I do eat a carby meal I tend to feel very tired and almost like I am getting blood pooling in my stomach, even if it is something small I still find a degree of sluggishness happening afterwards, most of which I didn't truly realise until I cut out the carbs. I also find that because of the way low carb works I tend to have more energy than on a 'normal' diet while eating very healthily/balanced/calorie dense. I also sleep much better and generally feel 'lighter' even though I am purposely maintaining my weight & not losing, it's sort of like my body is just processing things much, much better. I also get much less brain fog and barely any migranes any more. It might not work for everyone, and it can sometimes be strict or tricky, but I think it's something worth trying properly (meaning no slip-ups or cheating, making sure to calculate carbs and fat every day etc) for at least a month just to see how your body reacts to it. I can honestly say that I will be sticking to this for life.
  18. I'm on a low carb, high fat diet & it really helps. The first week or so you might feel worse, but after that it is plain sailing.
  19. Hi Rachael, I've done absolutely nothing different, I have a very boring daily routine. It's something I've never experienced before or ever come close to! Very bizarre feeling I was told that I probably wouldn't feel any difference / side effects for at least 3 weeks or so (is this true?), and since it's only been just a week I'm slightly worried that it wasn't the florinef. I don't know what it was though, it was a little scary but I do hope that it was just a fluke.
  20. Thanks to you both. I will check in with my doctor on Monday if possible. MedicGirl, it was just once (thankfully) but hours later I still felt very off kilter. I had a few high HR episodes afterwards which probably didn't help.
  21. No, thankfully this never happens to me. Gaming is a great hobby for me, I'd be really bummed out if I wound up feeling like that! Sorry it happened to you, maybe it's only with certain game types? I know someone who gets super ill when they play things like WoW, I don't know if it's from the stimulation or angles or what.
  22. I was just doing my usual 'spend all day looking at pretty things on my laptop' deal, and all of a sudden I felt something strange. Something very strange. It was like the inside of my head started to tingle and buzz, it felt fuzzy. It honestly felt like the space between my skull and brain was fuzzy and tingling all over the place. I couldn't sit up straight and I felt myself leaning over on one side but I couldn't stop it. It was very, very weird and I've never experienced that before. It only lasted for 30 secs, maybe even less than that, but now I feel a bit airy, spacey, free. Like I am moving myself very fluidly, too quickly? I have a tiny tinge of pain in my head but it's barely noticeable. I'm guessing it might be a side effect of my Florinef which I've only been taking for a week or so now. Has anyone else had this feeling, or know what it might be?
  23. If they have the equipment then I'm sure they will know how to do the test, don't worry about that! It's very simple What to expect? Expect to feel... bad. Maybe? It depends on how you feel normally while standing. You'll be strapped up to a bed, probably along with a heart & bp monitor, first you'll be lying down for a bit, then they will raise the bed up to a certain angle. At that point all you have to do is wait. For me it was horrible because I get pre-syncope very, very easily but it takes a while for me to actually pass out, so I spent maybe 15 minutes on the verge of consciousness, shaking and almost vomiting, getting serious chills and turning grey, all the wonderful pre-syncope symptoms but with no relief of sitting or lying down to get rid of it. It seemed like I needed 'help' to pass out completely, so they sprayed a drug under my tongue and within 2 minutes I had fully fainted, the bed was then pushed back into the flat position, and the nurses helped me wake up (really just by shaking me and calling my name), then I was allowed to rest for a while. That's basically my experience. It might be different for you, for everyone. All I can say is keep calm, because it will end at some point, it may just be very uncomfortable, but also it may be a complete breeze for you. They may not even 'need' you to faint at all. Either way - good luck!
  24. Mine feel very heavy and weak, also a bit wobbly/shaky, with time I feel like my knees won't lock in place and it's like my body is just ready for me to fall. My extremities almost feel like they are vibrating after a few minutes, but I go very pale from my face first, then my arms, & then it hits my hands which get sooooooo cold very very quickly. It doesn't happen to my legs though, just heaviness. I get most of my symptoms in the upper half of my body for some reason.
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