"Suffering the Slings and Arrows of Outrageous Fortune"

At least I hope that is what you have been assuming in the absence of new posts! It is true – things are going well and we have been busy, busy, busy. I have been plugging away at my book – making good progress – and Em has been plugging away at therapy – also making good progress.

Since I last posted about the Midodrine not working, a funny thing happened… It started working. One minute I was annoyed by it and thought it a lost cause, then the next thing I knew, Em was seeming to have more energy and waking up in the morning (9:30, 10:00!) on her own.

Over the past few weeks, Em undertook a major clean up of her room – a room that she hadn’t done anything with for almost 3 years, so was a total wreck. Somehow the years between 10 and 14 were lost to chronic illness and suddenly here she is a young lady. Apparently, having Polly Pockets and Barbies laying around just won’t do when you are 14. So, we totally emptied her room, sorted through her stuff, finally set up the new bed we bought a couple years ago (that has been sitting in the box unused) and she is now on her way to having her own beautiful room – done to her 14 year old specifications and not mine for her as a baby. We still need to paint, get a couple pieces of furniture and do a few Pinterest inspired projects to call it done, but she is very pleased – with the room and with herself.

Anyway, it was in the midst of this huge project that I suddenly realized that she was… better. When I questioned her about the Midodrine being the cause, she thought about it for a minute and had to say that apparently the Midodrine is working. When she misses a dose, she knows it. She does better on 3 doses a day rather than just 2. She is still dizzy when upright, although even this seems to be improving as time goes by. Her heat intolerance is better, as is her exercise intolerance. She is so much more active than before, up and around, even walking outside (when it isn’t 95 bajillion degrees here) and playing with the dogs. It is pretty amazing, to be honest.

We saw the cardiologist yesterday and he is a little stumped as to why it took so long to work, but we are all willing to take the improvement and not question too much. The only other thing we have done differently in the same general time period is up her Vitamin D. So, that could explain the fatigue improving, but I don’t think it would explain the other symptoms improving. So, she will stick with the Midodrine and see the doctor in 6 months. Whatever benefits she gets from it are welcome and, so far at least, the benefits are significant. I am as surprised as anyone – gobsmacked, in fact.

This is just one improvement – between therapy and finding shoes that are both cute and supportive and the meds and her room and… everything – we are hopeful. It has been such a long road to get to this place. When I started this blog,  I was honestly in doubt that we would ever be looking at such improvement. I was so afraid that the stories of people getting better would just not happen for us. But, we have come a long way and hopeful feels good.  I know we still have a ways to go and there are pieces to the puzzle that still need to address, but, for now, we are going to sit and enjoy Hopeful for a while.


Comments on: "No News is Good News" (5)

  1. Hi. Glad things are going the right way. I read your posts with interest even though I don’t comment afterwards. We will take the name Midodrine with us if my daughter ever gets to see someone who understands EDS/Pots. The few experts in the UK only see over 18s for some crazy reason. Your emails are doing good!
    All the best, Graham and Rachel , Gloucester UK.

    • Thank you so much! It is always good to know that our experiences are helping others. I hope your daughter gets to someone who can help her. Improvements in care are happening but too slowly! Keep pushing for answers – that is the best advice I can offer. Even when you want to give up and it seems hopeless, keep pushing anyway.

      FYI, the Midodrine is a pain in the butt – if you read my original post about it you know what I mean, but our cardiologist said it is the most effective medication for POTS. There are a few other meds as well, so don’t give up if it doesn’t work.

      Good luck and thanks for commenting!

  2. Jeshyr said:

    Wow! I’m so glad it started helped … bizarre that it took so long, I’m quite baffled about how that could happen – with me it’s VERY easy to see when each individual tablet starts and stops working, the difference is that sudden. I take 6 per day divided between 4 different times and that still only covers about 7 or 8 hours of the day!

    I have some news of my own: I’m going to be trialling IV saline. It’s very hard to organise to have it at home so I’ll be going into the hospital day centre on Monday/Wednesday/Friday for the next four weeks … if it helps, we’ll organise to have it done at home but this seemed like a reasonable compromise to start with. Cross your fingers!!

    • Yeah, needless to say it was a shock to realize that it was starting to help. I can’t say how close I was to calling to tell the doctor she needed to quit. As to why it took so long, well, who knows. Firstly, she is just weird when it comes to medication, so if there is an odd reaction possible (or even not possible) she will have it.

      My other working theory (I always have a theory!) is that the med was definitely having an effect (her BP was up and down pretty significantly those first couple weeks.) but it just took a while for it to ‘feel’ like it was helping. I think it just took time for her body to adjust to it and get the benefit. Now, she definitely knows if she has missed a dose or when it is time for the next, but in the beginning, her body couldn’t regulate itself with it. That’s my theory anyway, for whatever it is worth!

      I have heard of a lot of people getting IV fluids – seems like most people find it helpful. It is time intensive and a bit of a pain, but then again, so it feeling like crap from autonomic stuff! Good luck – hope it goes well and it helps! Let me know how it goes!

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