EH89

Hi everyone,

Could someone please recommend a specialist in Sydney in Dysautonomia. I’m not really looking for a cardiologist, more a neurologist. My symptoms are more neurological. 

Thank you very much in advance.

@Pistolthank you so much for taking the time to respond.

It really is very encouraging to hear that you live a very fulfilled life despite the challenges. If you don’t mind me asking, what does your life look like now? What are your limitations so to speak?

I am in the process of getting an appointment with a rheumatologist to investigate AI issues. 

One final question, I have been having a lot of trouble sleeping lately. It seems to be a mixture of anxiety and the adrenaline. My GP has given me a benzodiazepine to assist but has stressed it is only a short term solution. Any suggestions? I also have been taking propranolol.

thanks so much

E

Hi everyone, 

I am looking for some advice/guidance/relatability!

In hindsight, I have had symptoms of dysautonomia since my teenage years (my vision would black out when I got out of bed in the morning, occasional blood pooling in my feet, and GI issues if I ate a big meal). I’ve always thought these were normal.

Then about 2.5 years I woke up one morning with a really swollen salivary gland. I was travelling at the time and didn’t think anything of it and it went away, but then I started developing fatigue, especially in my arm and leg muscles. I underwent some blood tests but again nothing came of it so I learned to live with it.

Fast forward to last year, I had a beautiful baby girl in October. The pregnancy went really well but then I developed postpartum preeclampsia. I recovered well but at 4 months postpartum my symptoms exploded.

It started off with joint pain in my hands and feet, then pins and needles. Then I noticed blood pooling in my feet every time I went for a walk. Now my legs get really weak, and by the end of the day I can feel them shaking. I have become really intolerant to heat. I can’t seem to regulate my body temperature for example drinking a cold bottle of water and getting out of the shower gives me shivers. My pupils seem to have trouble adjusting to light and dark. I am constantly lightheaded. I am getting adrenaline surges and night sweats, and having a lot of trouble sleeping (which I did not have in the first 4 months postpartum). I also get a burning sensation in my feet at night. I also seem to get tremors on and off. My symptoms are a thousand times better come the evening.

I now have a positive ANA, and am awaiting seeing a rheumatologist. I have a few questions and would be grateful for any input. I am beyond terrified what this means for my beautiful daughter who is only 6 months old. 
 

1. I can relate a lot to the symptoms of hyperpots. For those that have this, do you symptoms come and go in flares? Could this be a bad flare that I am in postpartum?

2. If it is hyperpots, is the possible autoimmune diagnosis related? As in, could I have an autoimmune condition this whole time that is causing the pots? I suspect Sjogrens because of the salivary gland issue.

3. I am finding it really difficult to cope at the moment, especially considering my daughter is so young. For those of you with children, and those without, how do you find hope? I don’t recognise the body I have now from 4 months ago, it’s crazy! And I’m terrified it’s only going to get worse. 
 

Thanks so much in advance everyone. This community seems really lovely and encouraging.

E