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Everything posted by Scout

  1. I'm so sorry to hear you had such a bad flare after going out and having such a nice day! Sending lots of well wishes! It's so difficult how we can appear totally "fine" to those around us, and then crash so hard, all of a sudden, and people just often don't get it. The last time I had to go to hospital — a few months back — I had been out that morning with a friend, having brunch. She commented on how "I appeared fine" earlier and she was so confused (but generally caring overall) about how I could turn for the worst so fast. It was the first time I had been out socially in many months. I could feel my body saying that I was over-exerting during that morning (we walked a very short distance and it was a struggle for me), and then, bam... severe hyperPOTS attack, in hospital, then on the couch for weeks. I so miss being able to just make plans and not worry about the severe flare that sadly always seems to come. Really hope you feel better soon, Pistol. Also — I love the story behind your username
  2. @whoami I'm very sorry to hear you had that happen! My dysautonomia / hyperPOTS attacks feel really similar to a panic attack, and it can be hard to distinguish sometimes, because the release of adrenaline from hyperPOTS feels basically the same as a panic attack, however, I shake and shiver for quite a while afterwards — sometimes hours — with hyperPOTS attacks. As someone who has an anxiety disorder as well as dysautonomia, my heart goes out to you, because I know how hard it can be to be taken seriously. I started to notice big differences between my hyperPOTS attacks, and panic attacks, and was able to extinguish which was which. For example, my hyperPOTS attacks always come after I have exerted myself (even in a small way), or when I am overly tired / in a flare. My BP bounces really low, then high, then back down again etc, and changes a lot with posture changes. Eating salt, as well as fluid loading, helps. I hope you're able to get some autonomic testing done. As mentioned above, perhaps do a test at home and monitor your BP, see how it changes with posture changes etc. I wish you all the best!
  3. Bending definitely makes me feel worse. As does turning. I've noticed that when I am in a car, and the car turns, my head spins, often wildly, and I feel odd. Makes me feel unwell. It's actually made me interested in finding out if there's anything there linked with the baroreceptors (many of which are in the neck) — as I know that's a type of dysautonomia. Sometimes, when I bend or move my neck, it's like I can feel my neck muscles or carotid artery, sort of clenching or spasming. It's very hard to explain. But a very strange feeling, indeed. I'm sorry to hear so many other people are also having this reaction when we move our necks! It's not pleasant at all.
  4. When should we be alarmed? I've been having some readings recently that are really low. Lower than my "normal" lows (low readings for me are usually anywhere from 80/50 - 90/60, or a tad lower.) For example, over the past week or so, I am getting readings like 70/40. I'm always astounded that I'm not blacked out when I get those — sometimes I do "fizzle out", I call it, where I'm starting to black out but still conscious of things, if that makes sense? Had a moment earlier where my BP was that low and I started to feel a bit confused. A bit just... weird. It stayed that low for a bit and then bounced up high, then back down. Thankfully it seems to be OK again now. Around 90/60. But I'm just curious how low is... alarmingly low, if we see it as a sustained reading?
  5. I'm really curious about this, too. I have joint pain frequently. Generally, if I use a joint, it will hurt. For example, my right shoulder is aching right now as I type this. My arms get sore and tired daily and ache, often badly. My ankle is currently very sore. Yesterday my knee started hurting out of nowhere, which is another common occurance. Lower back, too. And my legs, regularly throb and hurt, even if I haven't moved around. I've assumed I don't have fibro because I have read you need widespread, constant pain for that, so I just assumed whatever is causing my pain is related to dysautonomia. I've become so used to it. I remember 5 or so years ago seeing a specialist (wasn't a rheumatologist, however) and they said one marker came back high for autoimmune, but they brushed it off. I should have remembered what it was, but I was naive at the time and took the doctors word for it being "nothing". Would you folks recommend I see a rheumatologist? @Pistol I really hope you get some answers!
  6. As @Pistol said, definitely ensure with your doctor or specialist that your heart is functioning fine (sounds like it is fine from your ECGs) I have left arm pain frequently, as well as "underarm pain", is the best way I can describe it. At times it can be severe, and I have gone to ER for it, always to find that my heart is doing fine, no signs of heart stress. So, it's tricky sometimes, because if I went to ER every single time I had arm pain, I'd be there most days, to be honest. It's just not feasible. So, my advice is: a) Ensure your heart is fine, to get that complete peace of mind. b) Always go to ER if you have pain that is worse than usual or feels odd / off. I've gotten used to what is my "normal" in terms of that pain, but anything that feels different or more intense, I absolutely go to the hospital. It's always better to be safe! Well wishes!
  7. In my case, altitude does make me more symptomatic. I always have a bad flare when flying, and the few times I've been to high altitude over the last few years, I have noticed feeling more poorly. I assume it has to do with how the slightly lower oxygen changes demands on the body, and how our system is already struggling.
  8. @Derek1987 Thanks so much Derek. And I'm so sorry your mum doesn't believe what's going on. It's so hard and hurtful when your own family does that. I know first hand. Showering is still a really hard one for me. My BP is still going up dangerously high in the shower (even when sitting down and using luke warm water) so I have to have sink washes. It's depressing me a lot. I miss being able to have a nice hot shower! Thankfully seeing the specialist soon so I am so hopeful of improving symptoms enough to be able to daily shower.
  9. @Pistol Thanks so much, Pistol. Your words have really helped me have some hope! I'm so sorry to hear that you also have to put up with this, and for so long, too. So frustrating how people think we just want "attention", when, ironically — I'm someone who hates attention and hates having all eyes on me. Nothing makes me more uncomfortable. I think this is why I put off getting a mobility aid for so long: I couldn't cope with people looking at me. You make such a good point about how, if doctors often don't even understand our illness, then how can we expect all our family/friends too. Unfortunately it is the way it is, but we can at least hope for some empathy and understanding from them, and, like you said, if they give us a hard time: we just have to ignore their ignorant words. We know our illness and our reality better than anyone. Thank you again I really hope you're doing well! @TCP I'm so sorry you're going through all that, and the adrenal insufficiency too, which I understand can be quite serious (baffled as to why doctors act like it's "nothing"). It's so hard not to be upset when people say things to us that are patronising and insensitive, and I'm very sorry you've experienced that too. So glad you got a wheelchair, and thank you for reminding me that we have to do what's right for us, and not worry about what others say (they have no idea what we go through). I'll definitely not let her words stop me. Will be getting the wheelchair very soon @lieze It absolutely is so sad how talking doesn't seem to change anything. I'm so sorry to hear you are hurting, too. It hurts me so much to know so many of us experience the same thing — having "friends" and family constantly doubt us, as well as doctors who are ignorant over our illness. My coping, too, is running very low, but I am thankful that we can all support each other here and be the support network that a lot of us don't have in our daily lives. How I wish everyone could just truly understand what we go through. Lots of well wishes your way!
  10. I'm really struggling with how much my family and some friends just refuse to acknowledge that I'm sick. Even after hearing doctors saying I'm unwell or that I meet the criteria for diagnosis, many people in my life still always say things like "a positive attitude will fix it". I do believe in being as positive as possible, but it's frankly really hurting me how much they won't listen when I tell them I can't do something. They think saying "can't" is a weakness, but in reality for many of us with dysautonomia, it's about accepting reality and not making myself ourselves even more unwell. I tried to have a discussion with my mother about how I'm going to buy a wheelchair soon, and her response was the typical "you don't need one and stop having a victim mentality". I just don't know what to do anymore. It feels like I'm hitting my head against a brick wall, trying to get them to see. Sure — I realise it's hard for people to sometimes understand invisible illness, but it's depressing me deeply how much my suffering is doubted on a daily basis. I'm afraid I'm going to snap and get so angry at my family especially, and not want anything to do with them. Does anyone have any advice on how to move forward? Thanks so much.
  11. Thanks so much @toomanyproblems. I really appreciate that. I really liked how you explained up there too how your system was losing control, and how you got to regain some of that. I so hope mine stablisises soon at least somewhat. It's difficult isn't it, just being at the whim of your body that is malfunctioning like this! Must remain strong though, and keep on keeping on. @Pistol oh, I didn't realise that was still syncope. Thanks for letting me know! I have that happen a lot - where I will collapse but still have a small amount of awareness, but when looking back, it's like I have memory loss on the event and can't remember it? If that makes sense? Thanks so much for your well wishes!
  12. Yes, it is normal for BP to raise somewhat during exercise, but it's not normal for it to be 180/130 when I had very slowly walked from one end of the house to the other, and then making me faint. There's nothing normal about that. Diastolic, especially, isn't supposed to increase much at all when you exercise. Mine doubles. Sorry, I don't mean to sound blunt but I get told by so many people in my life "oh that's probably normal stop worrying" so it's quite a sensitive and difficult thing when people tell me it's just normal, when I know it's anything but normal. I can't even shower without going into a hypertensive crisis.
  13. Hi Deborah. I just ordered a new BP machine today. It hasn't arrived yet but I'll let you know when it does, and how I find it. It's the Omron Smart Elite HEM7600T — a wireless BP cuff which syncs automatically with your smartphone, all you need to do is download the app. It's on the pricier side, but it comes with a 5 year warranty and also had amazing reviews from what I researched. I'm not sure if it allows you to add notes in the app it comes with, however. I will let you know once I use it early this week. Should be here Monday or Tuesday. Also, I know there are other free BP apps where you can input your readings and it correlates all your data, making a spreadsheet which shows you percentages of when your BP is low, high, etc. The one I presently use is very helpful. (The app I use is called "BloodPressure"). Makes it simple, too, for us to show our specialists, what our BP is up to!
  14. @lieze Thanks so much for the reply. I'm so sorry you're also having that happen. I really relate to that uncomfortable feeling you mention, of it feeling like a crisis. My surges used to be 150/100 typically, so it's odd to me that they're getting worse. It makes me feel like what I am experiencing is degenerative. But I am thankful at least that they are very short lived and only seconds usually. Sitting down or laying down flat always "fixes" it. It seems to revert me back to a normal / low BP. To be honest, I'm fairly sure I'm experiencing baroreflex failure of some kind. My specialist already told me I had autonomic dysreflexia, which causes crazy high BP surges. Just need to finally get better medication. I'm not on anything presently that would increase BP. It does make me nervous to walk around and do things to be honest. I just take things very slow though (and am getting a wheelchair very soon!). I occasionally check my BP when walking around just to see what it's up to, and so I can keep a close record for my specialist. Sometimes it is fine or quite low (for example, a few days ago, I was walking around a lot and it was 85/55) and then other times — like today — it is ridiculously high. *sigh*. Dysautonomia is a real mystery! @Outaker Thank you, and indeed, I am OK now. Stayed sitting down for the rest of the day!
  15. As mentioned above: you could buzz your head or get some clippers and do a number 3 or whatever you prefer. Will save a lot of money too. Otherwise there are mobile hairdressers, indeed. Quite popular too.
  16. I was feeling off earlier. I'd just walked from one end of the house to the other and checked my BP. It was 180/130. I got to the ground immediately and lay flat. It then dropped to 90/58. For the next few minutes I felt like I wasn't... present. I was just elsewhere, in a fog, my brain just not functioning or something. I hadn't completely blacked out and could feel my dog nudging me and hugging my arm (he's a sweetie), but it was an odd feeling. That was a scary experience and I believe the highest I have ever seen it. It only seems to surge for seconds, but it still terrifies me. I just needed to rant about that. Sorry, but it spooked me a lot and it's comforting to talk it through. I hope everyone is having a lovely day.
  17. Fabulous article and lovely illustrations. Thanks so much for sharing! It's a good one to share with family / friends who just don't "get" what we go through.
  18. @Pistol Thanks for the information. I really hope you're OK and manage well with the prinz metal angina. I believe I have heard of it before — is it also known as coronary spasms? What type of pain does it cause? Do you take a med to prevent it? My chest pains are usually quite sharp, and my cardiologist said it could be the mitral valve prolapse (not severe at this stage, but the chest pains can be). Often, it is to the left side of my chest, but sometimes it's right in the middle and feels like being stabbed with a knife. Short episodes usually. I think the longest I've had is maybe a couple of minutes. I think my cardiologist was confident after the CT scan of my heart, that my arteries were fine, so didn't do anything further. But it is interesting you mention it, because I've had times where I have wondered if I was having some kind of coronary spasm, because I have heard of those, and I think I also read that they were more common in women?
  19. @KiminOrlando Good idea, Kim! I'll check out the option of a second hand chair, for sure. @Pistol Very good point. I emailed the venue yesterday, and unfortunately they don't have any mobility aids, which is a shame. So many shopping centres and whatnot do offer mobility scooters and wheelchairs, so I'm a little surprised this place doesn't! It's a very big venue.
  20. I'm so sorry to hear you've been through that. It sounds truly terrifying. We are here and support you! I've only ever had treadmill stress tests, but haven't had one in a while. My cardiologist sent me for a CT-angiogram a few years back (a very cool new technology which is apparently just about as accurate as an angiogram done in hospital) due to my chest pains and shortness of breath. They took a picture of my heart and arteries, and it showed my arteries were 100% "open" and had no occlusions etc, so I think since then, he's not really bothered to do any further stress testing, even though I still have problems exercising. They've figured out that's just due to my dysautonomia. I wish I had some useful advice but I'm glad you're OK and on the mend. I've always had concerns over the chemical stress test, because I've heard of some adverse reactions happening, so I'm very sorry that happened to you! Take care and I hope you feel better very soon.
  21. Thanks so much for the replies @Pistol and @KiminOrlando! And absolutely — it's so frustrating having people assume that they know how I'm feeling, just by looking at me. Do you find it a fair bit easier to self-propel in a wheelchair, compared to walking, if that makes sense? Walking sets off my symptoms really bad, but I'm sure sitting down will help a lot, and I should be able to self-propel sometimes. Also, can you recommend any wheelchair brands / models? There's so many to choose from! Trying to find the lightest one possible, whilst also not too expensive. Some one recently recommended a fabulous wheelchair to me... but it was $5000.
  22. Hi there, Just wondering if anyone uses a mobility aid due to their dysautonomia? I've been looking at getting one for quite some time, and, now that my symptoms have worsened, have decided I'll really need one. I'm going to comic con in about 6 weeks, and there's no way I can go without some kind of mobility aid. I just can't stand that long. I just wish that people in my life were more understanding — they keep saying "c'mon, you don't need a wheelchair, just try harder!", and it's frankly so infuriating.
  23. Thanks so much for the replies. @bombsh3ll I have a similar concern that it will raise my BP surges higher. I think at this stage I will wait and discuss with my autonomic specialist in a month, and perhaps try the low dose of verapamil. I also have diazepam which I know can help with the surges. A little concerned about getting hooked on it, but if a low dose daily helps stop the surges, then maybe it's what I need right now. Like you said, sometimes we just have to try things! What have you found that works best for you? @Pistol Indeed, good point. Have you been on Florinef? If so, what were your experiences?
  24. I saw my cardiologist today and he suggested I try Florinef. He said either that, or Verapamil, but I can't do both, he said. I'm seeing my autonomic specialist in 6 weeks (wish it were sooner), so he said he understands if I want to wait until then and chat to her, and then see what we do. My concern with the Florinef is, I get BP surges and I don't know if that will make it worse. Sure, my BP is generally quite low on average, but I still get hypertensive surges which are often severe. Anyone with Hyper-POTS who has also been on Florinef? Experiences? Many thanks folks! x
  25. I definitely am even more symptomatic during my period. Also tend to get a lot more PVCs during my period. Lots of thumps in my chest, and faster heart rate. I assume it has to do with the fluctuating hormones and how they can then worsen our dysautonomia. Resting more, increasing fluids, salt and also, ensuring you have enough iron intake, definitely help a bit!
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