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Scout

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About Scout

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  1. 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.
  2. @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.
  3. @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!
  4. 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.
  5. 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!
  6. 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.
  7. 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!
  8. @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!
  9. 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.
  10. 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.
  11. 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.
  12. @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?
  13. @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.
  14. 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.
  15. 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.
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