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

Thursday, 20 May 2010

in need of a vent...

Okay, so it looks like I'm not going to be able to try DDAVP. Despite it being listed on pots place as being helpful, and despite me having symptoms of dehydration, excessive thirst, urinary frquency, and low blood pressure (all of which it can help to alleviate), because I don't have what it's PRESCRIBED FOR (diabetes insipidus) it looks like I can't have it. Drs seem like they aren't willing to prescribe stuff "off label".

I have a feeling I'm going to be one of the worst patients; taking myself off my medication after a month because I feel so dreadful, asking to try medications I'm "not allowed", asking for blood tests for this, that and the other on a quest to rule out further problems, then questioning the Dr on what medications I am prescribed before agreeing to take them!

I just keep in mind what Bernie Siegal said in his brilliant book whose name I have forgotten, but it's about Drs, patients and 'healing' (living as well as you can with what you've got): the people who are the most 'difficult' patients, who aren't passive about their treatments, don't take things lying down, but question and are assertive and inquisitve, most often end up doing better.

My philosophy is if a medication is making me feel worse than I do without it, there is no point taking it, I just hope my specialist doesn't give me grief for rejecting the beta blocker so quickly (feeling like a zombie for a MONTH is long enough for me!!!) and wants to try me back on it, or a smaller dose, because I don't even want to entertain the idea of beta blockers anymore as I read they put you more at risk of diabetes!

I'm going to seem like such a difficult patient if I start refusing my medication...

BUT dear Bernie was a wise and very compassionate Dr so he must be right- difficult patients do better, so I'm going to stick at being awkward. It is after all MY body, I'm not putting anything into it I'm not happy about!


  1. I've learned the hard way that being a good patient for the doctors, and not listening to my body get me and my body in more trouble than it's worth. You know your body better than the doctors, and what's working for you and what doesn't. Do what's best for you, your doctor is working for you, not the other way around! Take care, and best wishes on finding something that is right for you.

  2. you MUST advocate for yourself! I went off my beta blocker and refused to at least go back on the same one. One thing I find odd though... aren't all of our medications for POTS technically used mainly for other problems bc they don't know enough about it??? But it's good that your doctor this time around seems to know a lot about the medicines, and after your previous doctor experiences, it makes total sense to question what they're doing!