There are advantages to my husband working at the hospital. Not very many, but occasionally it is handy. First hand reports are quite handy!
My husband, who knows practically everybody at the hospital, knows one of the nurses who helped with Em’s tilt table test last week. She filled him in on what happened when he saw her on Friday.
Em fainted in 8 minutes. That was the fastest they had seen anyone faint and that is why the nurse sounded a little panicked when the receptionist knocked on the door with me standing there. (She was supporting Em’s head and just needed help finishing the test. It did freak me out a little, though!)
I knew it was fast but didn’t realize it was that fast. I underestimated how much prep time they had in getting her ready for the test. I knew they had put the electrodes on after I left so I knew they had to have taken a few minutes to get her ready but didn’t realize how much time prep would actually take.
8 minutes does seem pretty quick. The ironic thing is that she has improved a lot in the past few weeks thanks to the diamox and mast cell treatment. There have been times in the past year when she wouldn’t have made it up on the table without fainting, let alone for any time upright. There have been days when she couldn’t sit up without feeling faint . The nurse told my husband that Em would probably be put on some medication to control the tachycardia. I have a feeling we will be referred to an EP – electro physiologist – at Reid but haven’t heard anything yet.
I am ok with that, but we have all decided we will decline any further testing – at least tilt table testing – for now. For one thing, it is too hard on her to be up and down with the medication. I won’t put her through that again without very good reason. Furthermore, I fully expect the POTS symptoms to fade away to nothing over the next few months on Diamox. The rest of the Driscoll theory has been spot on so there is every reason to think it will be accurate for the POTS symptoms as well. Not sure how the experts will take that but I am feeling awfully confident at the moment. If things don’t improve within a year, or if they get worse, we can talk about more testing then. I am open to trying some medication, but I know some of the options can be tricky with mast cell disorders, so we will see.
I guess we have learned to live with the POTS symptoms – she has learned to compensate and avoid fainting. The symptoms are kind of like living with a really unpleasant family member – you really loath them but learn to carry on even when they are harassing you. At least that is how it has been for Em but POTS has certainly been terribly debilitating for her and I know it is worse yet for others who live with it. I guess that is why I am a bit surprised at how quickly she fainted. She had never actually fainted before – I know she comes close and prevents it but I have read of so many others who faint easily and wondered if she would even faint in the 45 minutes. Guess I have just got used to living with it and really underestimated how much it affects her!
I am glad we had the test – even with the pain and suffering she experienced in going off the amitriptyline and benedryl so she could do the test. I am even gladder we got a conclusive result and hopefully it will lead to some alleviation of the symptoms in the short run. It will be really interesting to see what an EP makes of the Driscoll Theory regarding POTS in EDS patients!