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I have dysautonomia, ask me (almost) anything :) Watch

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    October was dysautonomia awareness month, and seeing as I managed to totally miss that I decided I'd do a thread for it now if you have it too feel free to ask/answer questions as well, I've never found anyone else with my form of it. But yeah- ask away!
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    (Original post by furryface12)
    October was dysautonomia awareness month, and seeing as I managed to totally miss that I decided I'd do a thread for it now if you have it too feel free to ask/answer questions as well, I've never found anyone else with my form of it. But yeah- ask away!
    What (in simple terms) is it? And how does one pronounce it?
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    (Original post by furryface12)
    October was dysautonomia awareness month, and seeing as I managed to totally miss that I decided I'd do a thread for it now if you have it too feel free to ask/answer questions as well, I've never found anyone else with my form of it. But yeah- ask away!
    think i ask you enough questions as it is but :hugs:
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    (Original post by Tiger Rag)
    What (in simple terms) is it? And how does one pronounce it?
    It basically means some of the reflex actions your body is meant to do automatically, mine doesn't do. So for example my main problem is with standing- for most people their heart rate increases a little bit so their blood pressure doesn't drop, but mine does the opposite so I end up passing out. It's pronounced dis-ort-on-ohm-e-uh

    (Original post by CoolCavy)
    think i ask you enough questions as it is but :hugs:
    :hugs:
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    (Original post by furryface12)
    October was dysautonomia awareness month, and seeing as I managed to totally miss that I decided I'd do a thread for it now if you have it too feel free to ask/answer questions as well, I've never found anyone else with my form of it. But yeah- ask away!
    What does dysautonomia prevent you from doing in everyday life? Also, could you explain more about your form of it?
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    (Original post by furryface12)
    It basically means some of the reflex actions your body is meant to do automatically, mine doesn't do.
    So....if you put your hand on a hot stove accidentally you'll burn yourself badly because your body wouldn't reflex off it?
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    if a doctor hits your knee with that tiny hammer does your leg kick? o.0
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    (Original post by HamedxAli)
    What does dysautonomia prevent you from doing in everyday life? Also, could you explain more about your form of it?
    Anything that involves standing for more than a minute or two really. I have to sit down in the shower and cooking or washing up for example- heat makes it worse so especially the first two, I just pass out otherwise. I'm a musician so you can imagine some of the problems surrounding that! I have a form called neurally mediated hypotension or NMH, meaning that my heart rate goes down instead of up when I stand up.

    (Original post by Sabertooth)
    So....if you put your hand on a hot stove accidentally you'll burn yourself badly because your body wouldn't reflex off it?
    (Original post by Froppy)
    if a doctor hits your knee with that tiny hammer does your leg kick? o.0
    Nah not quite, fortunately! It's the ones done by the autonomic nervous system, so most of it you probably don't even realise happens (or I didn't anyway until it didn't). Things like temperature regulation, how you react to light or standing up. That said my coordination's rubbish anyway so I generally just end up burning myself anyway
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    :bump:

    Any more questions anyone?
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    Did you do a tilt table test? How was it?

    I'll have to have one soon for suspected POTS (another form of dysautonomia).
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    (Original post by furryface12)
    :bump:

    Any more questions anyone?
    Do you know the cause of your dysautomonia?

    Have you ever lost consciousness and for how long?
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    (Original post by Pathway)
    Did you do a tilt table test? How was it?

    I'll have to have one soon for suspected POTS (another form of dysautonomia).
    They're not the nicest of things but do the job I guess. I lasted about seven minutes then passed out which is pretty good for me given you can't move at all, I think people with PoTS it's generally a bit longer although don't quote me on that. It's what I was being tested for too but apparently my heart does the opposite cus I'm awkward like that good luck!

    (Original post by Mil99)
    Do you know the cause of your dysautomonia?

    Have you ever lost consciousness and for how long?
    Not really, I know it's not heart based with in the structure but that's about it. My cardiologist reckoned it could be seretonin (sp?) related as I was severely depressed at the time, but ADs helped with that a lot and not the NMH so who knows really!

    Yeah I have, a few times and come very close a lot more. It's usually pretty quick depending on how I fall, it's a long while before I can stand up or anything though and I'm completely useless the rest of the day. The exception is in the shower as you don't end up horizontal, so it takes a bit longer and also the warmth exacerbates it. I just sit down in there now!
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    (Original post by furryface12)
    They're not the nicest of things but do the job I guess. I lasted about seven minutes then passed out which is pretty good for me given you can't move at all, I think people with PoTS it's generally a bit longer although don't quote me on that. It's what I was being tested for too but apparently my heart does the opposite cus I'm awkward like that good luck!


    Not really, I know it's not heart based with in the structure but that's about it. My cardiologist reckoned it could be seretonin (sp?) related as I was severely depressed at the time, but ADs helped with that a lot and not the NMH so who knows really!

    Yeah I have, a few times and come very close a lot more. It's usually pretty quick depending on how I fall, it's a long while before I can stand up or anything though and I'm completely useless the rest of the day. The exception is in the shower as you don't end up horizontal, so it takes a bit longer and also the warmth exacerbates it. I just sit down in there now!
    I pretty much always pass out when I stand up at the moment, but hoping this cardiologist thing'll get fast tracked. Being horizontal all the time is not fun, lol. Sorry to hear you passed out though. I've heard some horror stories about TTT, pretty sure one doctor even called it barbaric. :eek3: Are things any better now?
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    (Original post by Pathway)
    I pretty much always pass out when I stand up at the moment, but hoping this cardiologist thing'll get fast tracked. Being horizontal all the time is not fun, lol. Sorry to hear you passed out though. I've heard some horror stories about TTT, pretty sure one doctor even called it barbaric. :eek3: Are things any better now?
    Yeah I do too, not usually fully though thankfully. Oddly enough I'd never actually associated it with NMH but maybe it is now I think about it.. too many conflicting conditions and yeah it is pretty much, quite surreal being in a small room tied to a table with no top on being stared at by various people :erm: but it's the only way they can do it i think and they need you to be safe when you fall over. Not that we are the rest of the time but yeah :lol: make sure you have someone with you, they can't actually be in the room (or couldn't for me) but you'll need it afterwards. The main thing is to just not resist it, it goes against every instinct we have to hold on for as long as possible but they need to see what happens. I got told off for wiggling my toes which I hadn't even noticed I was doing
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    (Original post by furryface12)
    Yeah I do too, not usually fully though thankfully. Oddly enough I'd never actually associated it with NMH but maybe it is now I think about it.. too many conflicting conditions and yeah it is pretty much, quite surreal being in a small room tied to a table with no top on being stared at by various people :erm: but it's the only way they can do it i think and they need you to be safe when you fall over. Not that we are the rest of the time but yeah :lol: make sure you have someone with you, they can't actually be in the room (or couldn't for me) but you'll need it afterwards. The main thing is to just not resist it, it goes against every instinct we have to hold on for as long as possible but they need to see what happens. I got told off for wiggling my toes which I hadn't even noticed I was doing
    Not even a gown? :eek: Yeah, that's what friends have told me, don't wiggle your toes or pump your calves (both of which I do when standing, even if it doesn't help anymore :ninja: ). My mum'll be coming with me, so should be all OK. Wish they could just use the Poor Man's version of the TTT instead, but NOOOOO. :lol: When were you diagnosed with NMH?
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    (Original post by Pathway)
    Not even a gown? :eek: Yeah, that's what friends have told me, don't wiggle your toes or pump your calves (both of which I do when standing, even if it doesn't help anymore :ninja: ). My mum'll be coming with me, so should be all OK. Wish they could just use the Poor Man's version of the TTT instead, but NOOOOO. :lol: When were you diagnosed with NMH?
    Nope fairly sure I was allowed to keep my jeans on just with them rolled up iirc. Too many wires and stuff with a top on and they need to be safe when you lose consciousness or whatever. And yeah, do both of them too constantly your mum is good that'd be way too easy :lol: I had the test in october 2015 I think, got the actual diagnosis around the following april or may? But that's just cus the hospital screwed up and referred me back to the wrong department i'd imagine it should be a lot faster for you, or would hope it would be...
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    (Original post by furryface12)
    October was dysautonomia awareness month, and seeing as I managed to totally miss that I decided I'd do a thread for it now if you have it too feel free to ask/answer questions as well, I've never found anyone else with my form of it. But yeah- ask away!
    :hugs:Thanks for sharing about this.
    What do you do to manage it and is there anything special people need to consider if you're ever ill or if you do pass out?
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    (Original post by furryface12)
    Nope fairly sure I was allowed to keep my jeans on just with them rolled up iirc. Too many wires and stuff with a top on and they need to be safe when you lose consciousness or whatever. And yeah, do both of them too constantly your mum is good that'd be way too easy :lol: I had the test in october 2015 I think, got the actual diagnosis around the following april or may? But that's just cus the hospital screwed up and referred me back to the wrong department i'd imagine it should be a lot faster for you, or would hope it would be...

    Ohhh, that's so weird, i thought you'd have to wear a gown for privacy, but fair enough. :lolwut: Yeah, mum's great with all this stuff, even shouts at A&E doctors when they do stupid ****. :teehee: Well, if the cardiologist isn't knowledgeable about dysautonomia the private clinic I've been referred to (for my er...primary (?) physical disability, the one that basically caused the suspected POTS) has an attached autonomic unit - so will just go there instead. I know some cardiologists don't like "believe in" dysautonomia or chalk it up to anxiety (which this is completely different to). I hope I don't have to wait that long though. :eek3:

    Have you ever thought about getting an alert dog? My mum's suggested it to me for my fainting issues (among other things). Could potentially help you too though? :console: I know there's a charity that specifically does POTS dogs, but I'm pretty sure they would do other dysautonomias too, like NMH. :dontknow: Probably specifically do POTS dogs because POTS is the most common dysautonomia.

    Do you have a medical alert bracelet?

    All the questions. Sorry. :lol:
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    (Original post by Kindred)
    :hugs:Thanks for sharing about this.
    What do you do to manage it and is there anything special people need to consider if you're ever ill or if you do pass out?
    At the moment not a lot. Making sure I drink enough and eat regularly is probably the main thing, and just making sure I'm not standing up for long (obviously), not too warm, stuff like that. I guess I'm technically still on meds for it but they don't do anything! I can normally tell when I'm going to pass out and feeling bad for a couple of minutes before, but if I do the main thing is just making sure I'm lying down as then it's faster for blood pressure etc to reset. Don't worry I'll try not to do it next weekend!

    (Original post by Pathway)
    Ohhh, that's so weird, i thought you'd have to wear a gown for privacy, but fair enough. :lolwut: Yeah, mum's great with all this stuff, even shouts at A&E doctors when they do stupid ****. :teehee: Well, if the cardiologist isn't knowledgeable about dysautonomia the private clinic I've been referred to (for my er...primary (?) physical disability, the one that basically caused the suspected POTS) has an attached autonomic unit - so will just go there instead. I know some cardiologists don't like "believe in" dysautonomia or chalk it up to anxiety (which this is completely different to). I hope I don't have to wait that long though. :eek3:

    Have you ever thought about getting an alert dog? My mum's suggested it to me for my fainting issues (among other things). Could potentially help you too though? :console: I know there's a charity that specifically does POTS dogs, but I'm pretty sure they would do other dysautonomias too, like NMH. :dontknow: Probably specifically do POTS dogs because POTS is the most common dysautonomia.

    Do you have a medical alert bracelet?

    All the questions. Sorry. :lol:
    So did I but apparently not there was a really young male nurse doing it and I was like :erm: then apparently he knew my friend's brother which was even worse :lol: but shouting at doctors when they need it is good, as is the hospital specialism. And that's just mad. I got told being severely asthmatic was down to anxiety the other day and they tried to take me off all my meds which was just :lolwut: fortunately we agreed on one at a time in the end and did the least problematic one first...

    I hadn't actually! My dog is amazing for knowing when I'm really ill though, I've never noticed it with NMH but other things she notices sometimes before I do and has been known to bark until someone comes. Really miss her but that sounds like it'd be amazing for you, on several levels! Hope you can get one.

    I don't, it's something I should probably think about though particularly now I'm at uni/less likely to be with people that know about it. I can't cope with stuff round my wrists but there must be another way! Need to push again for a referral back to cardiology again I think, they discharged me when I was first diagnosed as they had too many people on the books but could really use the help. My GP is great but had never even heard of it before me- think he's wondering just what he's been landed with trying to sort things out atm :lol:

    That was a long answer sorry
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    (Original post by furryface12)
    At the moment not a lot. Making sure I drink enough and eat regularly is probably the main thing, and just making sure I'm not standing up for long (obviously), not too warm, stuff like that. I guess I'm technically still on meds for it but they don't do anything! I can normally tell when I'm going to pass out and feeling bad for a couple of minutes before, but if I do the main thing is just making sure I'm lying down as then it's faster for blood pressure etc to reset. Don't worry I'll try not to do it next weekend!


    So did I but apparently not there was a really young male nurse doing it and I was like :erm: then apparently he knew my friend's brother which was even worse :lol: but shouting at doctors when they need it is good, as is the hospital specialism. And that's just mad. I got told being severely asthmatic was down to anxiety the other day and they tried to take me off all my meds which was just :lolwut: fortunately we agreed on one at a time in the end and did the least problematic one first...

    I hadn't actually! My dog is amazing for knowing when I'm really ill though, I've never noticed it with NMH but other things she notices sometimes before I do and has been known to bark until someone comes. Really miss her but that sounds like it'd be amazing for you, on several levels! Hope you can get one.

    I don't, it's something I should probably think about though particularly now I'm at uni/less likely to be with people that know about it. I can't cope with stuff round my wrists but there must be another way! Need to push again for a referral back to cardiology again I think, they discharged me when I was first diagnosed as they had too many people on the books but could really use the help. My GP is great but had never even heard of it before me- think he's wondering just what he's been landed with trying to sort things out atm :lol:

    That was a long answer sorry
    Oh no! That's kinda embarrassing. Ahh, oh well. I've probably experienced more embarrassing things - fainting in public is pretty embarrassing, :lol: No gowns, no problems. :rofl:

    Oh, that's so interesting! I know the the medical alert charity that trains dogs can actually train already owned dogs - perhaps something to look into? Can get the link if you like? I dunno if I'll go through them though, there's a different charity that does assistance dogs for my primary disability, so I'm pretty sure that they know about comorbidities (they also do MH things too, but you need a physical disability to get approved). But yeah, I've been looking into it a lot, especially as my health is going down the toilet pretty quick.

    They do medical alert necklaces as well? Would that be better than a bracelet? I carry a medical alert card in my purse, but haven't got any jewellery as of right now (too much going on lol, will get round to it in the future). I don't go out alone though, it's more like if there's an accident or whatever (catastrophic thinking, amirite?). I do sometimes give the card to new health care professionals though, because it explains things pretty well. :lol: I'm lazy with explaining now. :rofl: So perhaps a necklace with a small pendant and then a card in your purse could work? :dontknow: I find heavy necklaces aggravating that's why I'm going for a bracelet instead.

    That's so bad that they discharged you! :eek2: That's what my GP was like when I first got diagnosed with my "primary" disability (idk how to explain this, but yeah). is he willing to learn from you or research it himself? My GP is great now, he knows so much and is really good when I ask about issues or need referrals. How is your GP with referring you? Definitely push for a referral back to cardiology!
 
 
 
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