After ranting and raging about the damn nerve of the cardio telling me to 'put on weight and forget about it' I have emailed 2 consultants who deal with POTS, inquiring as to whether they could test me for it if I got a referral from my GP.
I'll await to hear from them before I make my next move. One is local, which is a plus, with a 'special interest' in POTS. I'm just wary of seeing people who I haven't heard good reports about now, after the palava that was today. I'd be so pissed off if precious time was wasted yet AGAIN. Though the fact he knows about POTS and syncope suggests that he should be on the ball with it. I'm just wary as to whether 'should be' means WOULD be. Though he was listed on the STARS website so that should I hope count for something.
The other is Prof. Julia Newton, who is listed on the DINET website as well as STARS and who I've heard a couple of good reports about. This would mean going out of my way and travelling much further afield, but it'd be worth it to see someone who knows what they're doing and has a caring nature (apparently, as past patient reports I stumbled across said).
So I don't know yet, depending on the responses I get, and on things like waiting times for referral, I'll hopefully be able to see either Prof N or Dr John West closer to home.
It's just more damn waiting but I keep telling myself, least I'm getting closer...
"I can live my life with this condition and make it a damn good life, full of great times- the stuff of wonderful memories, so when I'm old in my rocking chair looking back at it all I can think DAMN. I lived WELL. Oh yes. That I will do, no matter WHAT." ~ Me, Jan 11, 2010.
I thought it was the dish that ran away with the spoons?
Well, in the nursery rhyme it is but for me it's POTS!
Click this for an explanation of POTS
And this for an explanation of SPOONS
Click this for an explanation of POTS
And this for an explanation of SPOONS
About Me
- Laura
- United Kingdom
- I love photography, nature, the countryside, spending time with my boyfriend and my friends, fun, laughter and dancing.
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Dysautonomia Demystified.
Dysautonomia is a dysfunction of the autonomic nervous system. The ANS controls all the things you don't think about, like digestion, body temperature, blood pressure, heart rate.
The form I have is called "POTS".
"POTS" stands for "Postural Orthostatic Tachycardia Syndrome" which in simple terms is rapid heartbeat when standing.
That's only one of the symptoms. It's called a 'syndrome' because there are a vast array of other symptoms involved. Because it's a disorder of the ANS, anything which that controls can malfunction.
The symptoms I personally experience are:
*Fatigue: POTS can be draining and even debilitating as it takes 3 times as much energy just to stand up when you have it, therefore doing every day things is like running on the spot all the time- if an ordinary person did that, they'd be tired! That's the reality of living with POTS- you have no choice- you can't "stop running" because your body is keeping you 'running' (physiologically) all the time you are standing.
*I also have Inappropriate Sinus Tachycardia, which is a speedy heart rate all the time, even when I'm 'resting'. This means that for me, even sitting down is like jogging on the spot, or doing star-jumps. Basically, it's like my body never truly gets to rest. So I'm pretty much always tired!
(Check out The Spoon Theory for a good explanation of what it's like living with limited energy and having to forward plan everything to make sure you don't leave yourself short).
*Overactive Bladder (nervous system controls it, nerve signals aren't working right)
*Excess Thirst/Dehydration (if ever I find out why I have this, it'll be a miracle!)
*Migraines, or if not migraines, certainly frequent headaches.
*Neck and back pain
*Muscle aches/joint pain
*Brain fog- which makes a person forgetful and slow in their thinking, have difficulty accessing information stored in the brain, e.g. difficulty finding the right word, finishing sentences, remembering what to do and how- it's like having senile dementia; I joke about the dozy things I've done because of it because you have to laugh, otherwise you'd cry! Having an illness that disrupts your whole body is one thing, having it try to take your mind as well is another.
*Gastro-intestinal problems- bloating, reflux, feeling full quickly
*Disturbed sleep patterns (aka not sleeping well and also not feeling as if your sleep is restful even when you do).
*Involuntary muscle jerks when I'm trying to relax/sleep.
*Feeling as if I can't get enough oxygen, even though I'm breathing fine (very weird).
*Fidgety, always 'wired' feeling (makes it hard to truly relax)
*Feeling overstimulated easily
*Not being able to stand still for too long, due to excessive heart rate climbing higher and higher, which makes me feel physically 'stressed'.
There's possibly more but brain-fog makes one forgetful... I think that's enough to paint a picture anyways!
The form I have is called "POTS".
"POTS" stands for "Postural Orthostatic Tachycardia Syndrome" which in simple terms is rapid heartbeat when standing.
That's only one of the symptoms. It's called a 'syndrome' because there are a vast array of other symptoms involved. Because it's a disorder of the ANS, anything which that controls can malfunction.
The symptoms I personally experience are:
*Fatigue: POTS can be draining and even debilitating as it takes 3 times as much energy just to stand up when you have it, therefore doing every day things is like running on the spot all the time- if an ordinary person did that, they'd be tired! That's the reality of living with POTS- you have no choice- you can't "stop running" because your body is keeping you 'running' (physiologically) all the time you are standing.
*I also have Inappropriate Sinus Tachycardia, which is a speedy heart rate all the time, even when I'm 'resting'. This means that for me, even sitting down is like jogging on the spot, or doing star-jumps. Basically, it's like my body never truly gets to rest. So I'm pretty much always tired!
(Check out The Spoon Theory for a good explanation of what it's like living with limited energy and having to forward plan everything to make sure you don't leave yourself short).
*Overactive Bladder (nervous system controls it, nerve signals aren't working right)
*Excess Thirst/Dehydration (if ever I find out why I have this, it'll be a miracle!)
*Migraines, or if not migraines, certainly frequent headaches.
*Neck and back pain
*Muscle aches/joint pain
*Brain fog- which makes a person forgetful and slow in their thinking, have difficulty accessing information stored in the brain, e.g. difficulty finding the right word, finishing sentences, remembering what to do and how- it's like having senile dementia; I joke about the dozy things I've done because of it because you have to laugh, otherwise you'd cry! Having an illness that disrupts your whole body is one thing, having it try to take your mind as well is another.
*Gastro-intestinal problems- bloating, reflux, feeling full quickly
*Disturbed sleep patterns (aka not sleeping well and also not feeling as if your sleep is restful even when you do).
*Involuntary muscle jerks when I'm trying to relax/sleep.
*Feeling as if I can't get enough oxygen, even though I'm breathing fine (very weird).
*Fidgety, always 'wired' feeling (makes it hard to truly relax)
*Feeling overstimulated easily
*Not being able to stand still for too long, due to excessive heart rate climbing higher and higher, which makes me feel physically 'stressed'.
There's possibly more but brain-fog makes one forgetful... I think that's enough to paint a picture anyways!
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