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

Tuesday, 16 March 2010

Biggest Fear...

This might sound crazy, to some, but my biggest fear at the moment is of going to the tests on 9th April and the specialist telling me that I don't have POTS...

Don't get me wrong. It's not that I WANT a chronic illness. It's just that, as far as how I feel is concerned, I've been living with one for 9 years this Winter and every time I've had tests or tried to get the doctors to believe me that something is wrong, I've been asked if I'm stressed, told that I'm healthy, and made to feel like I've just wasted their time being neurotic.

The cardiologist who diagnosed me with IST told me to try coming off my overactive bladder meds as they can worsen tachycardia. He said they wouldn't be CAUSING it but could be exacerbating it. So then, that made me worry- what if it's the meds causing the +30bpm increase and I don't actually have POTS at all and then there's (once again) NOTHING to explain why I feel the way I do.

Plus the fact that I can still do a majority of things that involve standing up and walking around and even dancing, and I started wondering if I wasn't just being delusional, or overly hopeful that I'd finally found THE ANSWER when really it was just another one of those wrong damn trees I'd gotten a hoarse voice from barking up.

I emailed my new consultant who has diagnosed and treated many POTSies and asked her how long she would recommend I come off the tablets for prior to my test in order for it to be accurate and a true reflection of what my heart rate naturally does. She said two days.

So, today it's two days since I last took a tablet, so I could test myself and make sure I'm not going to be travelling to Newcastle, getting my hopes up that I'm finally going to get a diagnosis, and wasting everyone's time.

I still got POTSy results. So I'm not delusional or barking up any wrong trees. All the tablets seem to do is add to my tachycardia somewhat, so that instead of being 56-64, my resting heart rate is 65-74. Even without the tablets, I am still getting increases above 50+ beats per minute at times.

I'm overanalysing things and charting and tracking them because I feel like I've got to PROVE that I'm not well. But really, my heart rate is speaking for itself along with all my funky symptoms. I might be one of the very lucky ones (and I am counting myself lucky after realising how damned debilitating dysautonomia can be for many) who can still walk around and function generally well, but I still HAVE this and it has still changed my life in a number of detrimental ways. After all, 'normal' people don't suffer with chronic fatigue, headaches and body pain just from being upright!

All I need now is to have it confirmed (oh, the peace of mind I will have then, to finally after 9 years have a diagnosis!) and then I can start the journey of learning to live my life well in spite of it.

April 9th can't come soon enough!


  1. I so understand your fear. Sometimes all you want is a diagnosis no matter what it is. When I was on the testing roller coaster, I went through the horrid phase of could it be something super bad eg MS, tumour. When I got my results back all negative it was weird. Yes I was relieved but also disappointed. I had been so desperate for a diagnosis any diagnosis that said I wasn't nuts and there was something really wrong. When I was finally told it was dys I was happy. Weird right? But I sometimes think the uncertainty is the worst diagnosis.

  2. It is pretty weird but I also completely understand! I was actually really upset when I found out I didn't have endometriosis, because I'd had such incredibly bad pelvic pain I was so sure it MUST be that, so when they told me post exploratory surgery everything was fine, I was *devastated* because in my mind, that meant continuing to live with excruciating pain but not knowing why. It is hard to fight when you don't know the enemy you're fighting!

    I feel like when I finally get a diagnosis I will want to throw a party because the relief will be so immense! xx

  3. OMG I have definitely been there! Waiting for a diagnosis is like being in the dark with something crawling around under your bed. Your imagination can torture you until you really know what it is.

    ...and even with positive diagnosis you can still have doubts about whether the doctor's conclusion is right. Not easy at all ;-)

  4. Hi there, fellow blogger here- found you through Rusty Hoe's site. =)

    As far as wanting a diagnoses so bad-I hear ya! I'm waiting for some news this week as well. And I love your title! Keep us posted!

  5. Hi there. I just found your blog. I also have Dysautonomia/POTS. I was diagnosed in 2007. It's kind of a long story.

    I'm so sorry you have been living with this awful monster for so long. I will be praying for you as you prepare to go to the specialist. I hope you will finally receive the peace of mind and validation you so desperately want and need.

    I'd love for you to come by and visit me. I'm currently doing a series of posts called, 'DYSAUTONOMIA: My Frequently Asked Questions'. I have had a lot of readers email and ask me various questions about my personal battle with this ugly disease. So, I finally put together a list of the most asked questions and my answers. I really hope it will help others.

    I really like to make friends with others, especially those who share this same illness. It helps to know I'm not alone.

    Well, I hope you have a 'good' weekend.


    Teresa <><

  6. Liz- you're absolutely right, that's a great analogy!

    Lucy- good luck with the news you are waiting for, I hope it's what you want to hear.

    Teresa- thank you. I've just linked to your blog through networked blogs. The FAQs are a great idea! :)