"Suffering the Slings and Arrows of Outrageous Fortune"

Quick update…

Em has been on the Diamox for almost a week and it is the miracle I had hoped for. She is headache free for most of each day now. The medicine is a bit variable as to when it wears off. Some days she goes late into the evening and the headache doesn’t return. Other days, it wears off at 3:00 in the afternoon and the headache slowly increases through the evening. But, as Dr. Diana points out, we are using a static dosage to treat a dynamic system – the production of CSF constantly changes from moment to moment. It is not surprising that the dose of Diamox has limits when faced with a CSF system in constant flux. And I would much rather deal with these minor fluctuations than have no answer at all. It is also entirely possible that as Em continues on the Diamox, things will continue to level out or we may end up adjusting the dose. I am just so thankful that the Diamox works, that I will gladly deal with the little quirks that we see. Oh, and no signs of dehydration or any problems. She is tolerating the medication very well and we couldn’t be happier!

We are preparing for her Tilt Table Test tomorrow morning. I know it needs to be done -it is long overdue, really should have been done a year ago – and it makes sense to get it over with. But I so wish it didn’t have to happen right now. She has to be off her amitriptyline and benedryl for 3 nights before the test. We had just got the ami to a good level – she was sleeping well and her sleep schedule was adjusting beautifully. Saturday night, the first night with no ami, she didn’t fall asleep until 6 am. And she felt awful all day. Headache, nausea, terrible fatigue. All symptoms of amitriptyline withdrawal. I strongly suspect that she went off it too quickly. The pain clinic told us to bump it down to 25 mgs for 3 nights, then 0 for the 3 nights before the test. But I think that was not gradual enough and she is suffering the consequences. Last night, she fell asleep around 3:30 am, so  that was a bit better. She just has to get through one more night, and she can start back on 25 mgs, then back up to 50 mgs after 3 nights.

She is dreading the Tilt Table Test and is generally in a very bad mood. That could  be withdrawal symptoms but I tend to agree with her that the timing of this sucks. She has had so little relief for so long that having the medication that actually helps her sleep taken away, seems cruel. She isn’t always very trusting of the medical community and with good reason. But, hopefully the good experiences start outweighing the bad ones.

The other thing I am worried about is that I need to stay in the room with her during the test. I am prepared to go to the mat for this one – the techs will have no clue about EDS or how fragile her joints are and she absolutely needs an advocate with her. Hopefully it won’t be an issue and the test gives us the conclusive data we need and we can get on with our lives.

So, that is what we are up to – two steps forward, one step back. But, in general, things are good and I am extremely thankful!

Comments on: "Quick update…" (2)

  1. Diana Driscoll said:

    Hi Beth, Oh my, you made me cry! I am so happy for you and Em, and I KNOW it will be straight up from here, my friend. As Em and her brain adapt to less pressure, the mast cell treatment will be so important. She is taking Benadryl — good. Benadryl is an H1 antagonist (“H” is for histamine). H1 antagonists tend to make us drowsy, but both of my kids and I adapted to Zyrtec in about 2 weeks (not a time my hubby would care to relive, however. ha). Everyone is different, though. Adding an H2 antagonist is important, too. In our house, we have Zantac and Pepcid AC sitting around and take double what is on the package. EDS folks tend to have too much stomach acid (likely from the mast cells, ironically), so it helps with that, but the PURPOSE is to block more histamine which dilates our vessels and makes the POTS worse. Please be sure her doctor keeps an eye on her serum CO2 levels (they must stay above 22 for Diamox to continue to work). Ours does fine with a few homemade baking soda capsules a day (and I ate it out of the box one day — I wouldn’t recommend that.). After a few months, she may need a potassium supplement (I do, my kids haven’t yet), but your doctor can watch those levels, too. Cool?

    Then, Beth, it’s time for Cromolyn Sodium — a mast cell stabilizer. It will keep Em’s mast cells calm, so she won’t just be blocking some of the histamine, she will not have to experience the nasty effects of the other 60 or so chemicals that mast cells spit out (no exaggeration). You shouldn’t have any problem getting this medication (no more “11 doctors to get a medication” routine for this one!). It’s about as inert a drug as there is! Em will need to take it religiously, four times a day. That’s kind of lousy, but after about 6 weeks, her POTS will be so improved that not only will she not mind taking it, she will want to MARRY it. 🙂 If you need help figuring out how to get it cheaper from a formulating pharmacy, just holler, OK? Otherwise, it’s pretty pricey stuff… Worth every penny, but still…
    If she is on an H1 and H2 antagonist and cromolyn sodium (and diamox), I will eat my cervical collar if she doesn’t feel like her POTS is just about GONE in a couple of months.
    Beth, I had gotten so bad that I couldn’t turn my head without feeling like I was passing out. I had to wear a hard cervical collar more than half of the time, and battled double vision, along with POTS. Ugh. My son had been unable to go to school for 3 years (and he was too ill to be tutored!). My daughter was just starting to show signs, too. Now, we all have our meds, we know what triggers our mast cells (stress, for one), my son is BACK IN SCHOOL, and my husband has his wife back. And she sees only one of him now! 🙂
    We are all getting strong enough now to exercise without stimulating our mast cells, so that will only help us with joint stability. When you are further along the mast cell journey, please let me know — I have a theory about our pain! 🙂 Really.
    One parting thought — when mast cells get going in our brains, we can get depression, bipolar presentation, suicide ideation and brain fog BIG TIME. I was there. It was gone — this still amazes me — in two DAYS of full mast cell treatment. No exaggeration.

    Please give Em a gentle hug for me, and thank you so much for your kind words.


    • Hi Dr. D,
      I love it when you drop by! Em is still doing well. The diamox has been so great. To have that horrible headache gone is amazing – it was worth all the trouble we had in getting it! We see the wonderful PA who prescribed the diamox in a few weeks and I am going to raise the CO2 and potassium monitoring with him. There is some other blood work that I think we should do, so that would fall right in. And we have to figure out what they want to do about her tilt table results. I know that they are going to want to do more testing, but we are going to be very selective about any further testing. I see no point in taking her back off the amitriptyline (and benedryl) when it has just started working and she was so miserable off it. (Going off it for the TTT was awfu!) Particularly when I am confident that the POTS symptoms are going to fade away between the diamox and mast cell treatment. I am totally confident about walking away from any doctor who isn’t willing or able to listen!
      I do think we need to go to the next level with the mast cell treatment. The Z & Z treatment seems to be less effective than it was in the beginning – she is experiencing a little more nausea and has more itchy, rashy spots than she has since starting the Z & Z. She started the zyrtec and zantac about a month ago. We could up the zyrtec – she is still only on 10 mgs, but I do think we need the gastrocrom. We are going to have to try locally for an immunologist – no way we can travel to Boston right now. If we get REALLY lucky, we might get someone locally who will at least listen and try to help. In some ways, we have been luckier locally than we have been at Cincinnati Children’s Hospital with all of their specialists! I might take her back to the pediatrician instead of waiting any longer – I have a hankering for a bit of a ‘I was right and you were wrong!’ discussion with him anyway. 🙂
      Anyway, thanks for dropping by and I will continue to share our success with the theory on my blog. Actually, around here we don’t call it a theory anymore, it is simply fact to us! 😉

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