Lainy

Dysautonomia is just extremely hard to understand. And even more so from an outside perspective. I have one friend, who I know cares deeply about me but whenever it comes to health issues and trying to explain any of it I just get a blank stare. It's incredibly discouraging but I just try to focus on all the other ways she's a supportive friend. Another friend of mine is far more interactive about it and asks me every time we meet up how I'm doing, what's working, what I've learned. I think the difference is personal experience. She's had a number of her own health issues and knows the struggles that come with it. (though not dysautonimia) So she just seems to understand far better than my other friend. I don't really have acquaintances because I can't maintain any sense of familiarity with more people. I don't have the energy for that most of the time. Some people get it. Some don't. Even within family. And I know searching for the people that DO get it is just sometimes something we don't have energy for. I haven't even tried explaining it to people beyond those 2 friends and immediate family. Something that helps loneliness for me when I can't physically meet up with someone is social media (I know, I know - boo ) But if you can find communities online with common interests to talk about it really helps. I have a couple people online that I've never met in person but it helps ease loneliness a bit to send them a message about whatever interest connected us in the first place Art, gardening, TV shows, a band etc. There's all sorts of groups on Facebook. Even dysautonomia support groups - you may even be able to find one for your local area and meet people who understand that way? I just want you to know it's not hopeless. It's totally possible to find genuine friends who will want to understand.

Hey all! Overall my symptoms have been much better in the last month since switching to a different beta blocker and I’ve been able to move forward in physical rehab and even started going on long walks every morning(couldn’t have imagined that a month ago!) But now my insomnia is back full-force and the things that had been working before are suddenly ineffective. I’ve been taking an herbal sleep aid called Deep Sleep that I found recommended here in combination with Magnesium citrate and it worked great at first. I was able to get off of Ambien entirely. Not so much the story anymore. Has anyone else been through this? Where everything else improves but sleep is worse? Or do herbal sleep aids lose their effectiveness(do we build a tolerance?) What do you take/do that helps your insomnia?

My doctor said the same but I didn't quite understand his explanation of it. I'm 28 and have had it for 12 years (only newly diagnosed with a hyper form of dysautonomia) and he said sometimes people can 'grow out' of that because as we age, things slow down? I'm not putting much stock or hope in that theory though...

That's something I hadn't paid attention to, either... but becoming extremely quiet and soft spoken does happen to me too. Like Gillian said, I think it has to do with being so physically tired you don't even have the strength to push air out to talk.

Showers are exhausting. I have to really plan them into my day. I used to love hot evening showers but if I wait until the end of the day anymore, there's just no energy left to take one. I end up dizzy, overheated, trouble breathing, pounding headache, etc. Mid-morning showers with lukewarm or cool water help me get through them without all the exhaustion and pre-syncope issues.

Now that it's three days later - I'm much better! lol I did take the advice to load up on salt and water(more so than normal) and that seemed to help me recover a little quicker. I hope you're feeling a little better today, too! I'm currently on a beta blocker to treat tachycardia. But for me personally, they make me tired in general so I'd be afraid to increase and make anything worse.

Have you spoken to your daughter's doctor? Before I was put on Propanolol, my cardiologist emphasized that there were a dozen other meds of this type we could try if Propanolol's side-effects were too much for me. I struggle on the other end of weight (have trouble keeping it & not related to this medication) so I can't speak to this particular side effect... I just wanted to lend some encouragement that there's definitely other options. Everyone responds differently and I hope that raising this specific concern with her doctor would help them narrow down some options. I hope you find what works best for her and that she finds some relief soon!

For me, it's primarily that "soul-crushing fatigue" with an all-over heavy feeling... like I'm lugging around lead-filled limbs. Lots of muscle aches, headaches, some cold-like symptoms. Blurry vision and dizziness get worse. I also have a severe drop in appetite, which does nothing to help me recover : /

I hope it's not too bad for you. I was down for most of the day myself(recovering from yesterday) I feel like I ran a marathon and then followed it up with weightlifting when all I really did was clean. : / Roxy, the timer is a great idea. That's mostly my problem, too. I get on a roll and totally forget to even stop for water... even if it's right next to me. lol

So, I'm sure I'm not the only one that over-does it. I had a good day yesterday with a lot more energy than I'm used to so I put it to work. Did a whole bunch of intensive cleaning I've been putting off due to just not feeling well and went at it all day. And now I'll probably be paying for it for several days because I definitely overexerted myself. What are your tips for overexertion? Besides LOTS of rest, what helps you recover? What cues do you pay attention to - to prevent overexerting yourself in the first place?

Sleep is so important for mood! Can I ask what that supplement was? I'm really struggling with insomnia and I'm so hyper-sensitive to prescription drugs they're hardly worth taking. I've been struggling with the emotional aspect, too. I was only diagnosed a few weeks ago after fighting for 12 years to understand what was going on. I was grateful at first, just to have some answers. But the reality that this is a long term, all encompassing condition with no 'cure' or set treatment has been hard to accept without resentment. I just keep reminding myself that I at least know what it is now. It helps so much just knowing I'm not crazy.

I'm just having a hard time wrapping my head around this. A couple weeks ago, my cardiologist told me I have a hyper form of dysautonomia. My question is how does dysautonomia effect the electrical function of the heart? Does it at all, or is it typical to get 'normal' EKG readings even though your heart's racing(120+ resting) and pounding out of your chest? Does this test result mean he was wrong? Does it mean I'm back to square one trying to find a diagnosis if my heart's electrical function is fine? Thanks in advance for any knowledge you can share! I'm just trying to understand.

Thank you for the welcome! I've already learned so much in just one week of being here. I can't thank you all enough for sharing so much of your experiences and information. <3

How do you all deal with comments from close family telling you you're just lazy, not trying hard enough, or calling you a "shut-in" ? If I had the strength and energy to go out more, I would. But they don't seem to understand how much it costs me to it. Aside from the "spoon theory" are there ways you've explained it that helped others understand better?

I was referred to a cardiologist for tachycardia, palpitations, and very elevated blood pressure that started getting more severe 8 months ago. After a long, long list of tests we determined my heart function is fine and the cardiologist said that it was just stress or anxiety(like you mentioned.) But then I started talking about all my other symptoms. I met with a second, more experienced cardiologist who has treated a number of "people like me" and he was able to look over my medical history, tests and symptoms and determined it was all tied to a dysfunctional/overactive autonomic nervous system. My cardiologist started me on beta-blockers, a high salt diet and physical therapy two days ago. I've been searching for answers for over a decade and had given up... I only sought out help again after hypertension, tachycardia and palpitations became daily, completely debilitating issues on top of everything else on that list at the start of this thread.

I'll have to pay attention and see if this coincides with bad days. I noticed it first a couple months ago and just figured it was due to recent weight loss but it keeps happening - even after gaining back what I lost. I thought it was the craziest thing and my family just counted it up as "me being weird" again. Funny to know how many of those weird things are actually tied to dysautonomia and POTS now that I actually have a diagnosis.

I was just diagnosed a few days ago. My cardiologist wrote down "Dysautonomic" on a business card and told me to do my own research at home after he'd explained the general idea. He bet me that I'd identify with all the symptoms I'd find listed... well he won that bet! For the first time in years, I know it's not in my head. And I'm not being an "oversensitive female"(direct quote from another dr.!!) Someone wrote earlier that they read through that list and just cried knowing they weren't alone. I'm not an easy cryer. But the past couple days have been world-changing for me and I admit...I cried too.