Back with good news! My daughter took 62.5 mgs of diamox last night and 2 hours later she told me not to get too excited, but her headache was easing and the dizziness was less too. When she got up today, the headache wasn’t completely gone but much reduced. A ‘2’ instead of the normal ‘8’ on the pain scale. That in itself is a huge improvement and I think it is just the beginning.
Interestingly, her positional blurred vision (when she turned her head to the left, her right eye blurred and vice versa) is essentially gone this morning and she no longer feels dizzy when she turns her head. She says it still feels ‘weird’ to turn her head, like it is too tight, but I suspect when we get the dose just right, that weird feeling will ease as well.
No problems tolerating the diamox thus far, but we will certainly keep an eye on her! We will bump the dose up to 125 mgs tonight and see if we can get rid of the headache completely.
At any rate, I feel like we have been granted a miracle. Dr. D, there are not words to express how grateful I am to you for putting this info out to help people like us. You have given my daughter a chance at living a full life by sharing your knowledge. All I can say is thank you – and I will continue to share the Driscoll Theory with anyone who will listen!
Well, Beth, I got a little teary on this post… 🙂 This is great news, and I agree with you that she likely needs a bit higher dose (disclaimer alert). As doctors we know that if there are chances of any side effects with a medication, it is almost sinful to expose the patient to the side effects, without giving them a therapeutic dose (something strong enough to do the job!). I have no doubt that you’ll figure out the dose. And it will likely get tweaked a bit along the way. You may want to make her some baking soda tablets to stay alkaline (CO2 above 22 or so), as the effect diminishes as acidity rises. You’ll notice some decrease in effect in a few days. That’s normal. After about a month, I was able to turn my head without feeling like I was passing out! I’m so glad she notices a difference already. Without that extra pressure, it may be just enough to lift the brainstem up a bit, and take off some fluid pressure around her brain stem. Yea! Next step? Mast cell treatment! 🙂 Thank you so much for your kind words, Beth. I feel like we’ve been down a dark road together and the joy of seeing some light at the end of your incredibly frustrating journey does indeed seem miraculous. Let’s keep spreading the hope! Big, big hug 🙂