"Suffering the Slings and Arrows of Outrageous Fortune"


Last night, after Em took the Diamox for the first time, it was a little like waiting for a stay of execution. Would it really work? Would it dehydrate her? Was this the answer or just a dead end? I started doubting that it could really help like I thought it would. A miracle just couldn’t really happen. What if all those doctors who said no were right and I was wrong?

She took the medicine at 10:00. At midnight she told me not to freak out, but her head was feeling better and she wasn’t so dizzy. She said her headache was a 4, when it had been an 8 or 9. At that point, I started breathing a little easier and stopped second guessing myself.

This morning when she got up, she said that her headache wasn’t gone completely but it was a 2. For more than 2 years, her headache has been at least a 7, usually more, all day, every single day. Reducing to a 2 seems like a miracle in and of itself but it will only get better.

Then I asked about her blurred vision – since sometime this spring, when she turns her head to the left, her right eye blurs; when she turns to the right, her left eye blurs. (This fact has freaked out a number of doctors and had them thinking it was caused by cervical instability impeding the arteries to the brain, which is why we were on our way to a fusion.) Well, this morning she turned her head and her vision didn’t blur.

I think we are on to something. She only took a small dose last night – 62.5 mgs. We will probably try the 125 mgs to see if that gets rid of the headache altogether. We can fiddle with the dose until we get it just right.

But, we are definitely on the right track. We will keep an eye on her and push fluids so she doesn’t get dehydrated – but I am not terribly worried about it at this point.

So, I guess we got the stay of execution after all. I am thinking that a cervical fusion is looking less and less likely. And a life with less pain is more possible. That is really a miracle. Gotta thank God and Dr. Diana! (Go to prettyill.com and check the theory and videos!)

Today is a very good day and those have been awfully scarce in the last two years.

[Regarding the tilt table test, I talked to the pain clinic and they have advised on how to titrate the amitriptyline down (and back up) safely over a few days, so Em won’t be off it for too long. It is frustrating because we are just getting to a good level and getting good results from it, but I think we can handle a few days off. The test has been rescheduled for next Tuesday, so that is all working out well.]


Comments on: "Relief!" (2)

  1. Michelle said:

    Wow! I wish I had found your blog sooner. I have been going on this same journey with my daughter (16). She passed out Feb 4th year, now only 6 months later she has been diagnosed with EDSIII (by Dr Tinkle in Aug.) and POTS (Dr Knilans- Cincinnati Children’s).
    GI complications are now a big issue and she has gastroparesis because of autnomic malfunction.(dysautonomia)
    She is in a wheelchair for any time we leave the house, which doesn’t happen often. This has been the hardest summer of our lives.
    I would love communication with another mom going through the same battles. Just mom stuff -like when to push her to do more and when to back of and just let her rest. How to keep my other child’s life as normal as possible.. etc. Those are some of the toughest things for me. Wanting so much to do what is best for her, and not always knowing what that is anymore when I always used to think I knew.
    We also home school and have for several years. It is so much harder this year.
    Thank you for your blog. I have thought of doing the same thing to make contact with others going through this same thing.
    Would love to hear from you.

    • Hi Michelle,
      Thanks for dropping by! I so understand where you are coming from! It is hard to watch our kids go through this journey. We have always homeschooled but I never planned on having to teach my kid how to manage her health and to be the head of her medical team. It is daunting. And often sad – although I try not to dwell on the sadness. For us, the neurological stuff has been the big road block – it just stopped her in her tracks. But we are so fortunate to have found the Driscoll Theory before we ended up with a cervical fusion. I know it may not be the answer for everyone, but I am committed to spreading the word! Autonomic Dysfunction is a big part of the theory, so you may want to check it out. There are lots of causes of POTS and not many good answers for EDSers. I don’t presume to know the answers for you, but checking it out may give you some answers. (Go to http://www.prettyill.com and click on ‘articles and handouts’ and you can download the theory. There are a couple videos where Dr. Diana explains things and they are worth the watch. The theory is complex – deals with high intracranial pressure and mast cell disorders and CCSVI, but for us it was a life saver. If you have any questions, feel free to ask me or Dr. D has a forum where you can ask questions or you can contact her personally.
      Back to your comments… I am happy to share my thoughts but I certainly don’t have the answers! I struggle with the same things you do. My son is 16, almost certainly has EDS but is mildly affected and is undiagnosed. We try to make sure he has a chance to live ‘normally’ but it is not easy. Schooling is next to impossible – fortunately he is old enough to do most of his work on his own, but he still needs me and my mind is consumed with my daughter.
      However, things are improving – She has gone on the Diamox and it has been a miracle – she is headache free for the first time in 2 years. I am really hoping that we can get her back into doing school work and get her caught up now that her health seems to be stabilizing. She is having a tilt table test tomorrow and had to go off her amitriptyline for 3 days. We had just got it to a good level and she was sleeping well. Now she feels awful and hasn’t slept well for a couple nights. It is just 3 nights so hopefully she levels back out again when she gets back on the ami. It always seems to be something but , for us, things seem to be looking up – I am so grateful that I can’t really complain about anything!
      Anyway, I will close for now, but please stay in touch. I am looking forward to talking to you – it is so good to chat with someone who is walking on the same path!

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