"Suffering the Slings and Arrows of Outrageous Fortune"

So, Em’s headache – which had been totally relieved since starting the Diamox in September  – is back with a vengeance, along with light and sound sensitivity.  She is back to being pretty miserable and actually wore her Miami J collar all night last night. On the upside, the collar did tamp down the headache this morning, so she hasn’t had quite as bad a day. Still, the headache is a 6/ 10 today and, while that is better than an 8, it is still bad enough.

I talked to the nurse at the neurologist’s office this morning. We are going to add in 125 mg of Diamox in the morning, so that is doubling her dose.  She took the additional dose today but it doesn’t seem to be doing a lot yet. It might take a few days to really get this under control.

We are going to do some blood work to check her potassium and serum CO2 levels. If the CO2 levels are too low, the Diamox won’t work. And Diamox can lower potassium levels.

We will have to see if it is just a matter of needing to increase the dose or if her CO2 levels are too low and thus negating the effect of the Diamox. If so, she will need to take baking soda capsules to reduce the amount of acid her body is making.

So, it is probably a relatively easy fix. I would be lying, though, if I said I wasn’t freaking out just a little bit. I hate like crazy to see Em back to hiding in the bedroom, isolating herself from light and sound – and thus, from life. But, we know the Diamox has worked wonderfully so far and I know this  is just a little speed bump. The Driscoll Theory has made it possible for my daughter to be headache free and has preserved her brain from further damage – so we can handle a little tweaking and an occasional adjustment!

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Comments on: "Diamox Adjustment" (3)

  1. Michelle said:

    So sorry to hear Em is struggling. I have seen you say that Dr T is not a fan of the Driscoll Theory. I am taking my daughter to see Dr Grubb on Monday. Any idea what his opinion is? I am putting my question list together and plan on asking. Just wanted maybe an idea ahead of time to prepare.

    We are also friends on Inspire. I am KYMama. I always enjoy your posts/replies there.

    We’ll be praying for Em.

    • Hi Michelle (KYMama),
      Thanks for helping me make that connection – now I feel like I ‘know’ you! There are just too many people with too many names on too many sites for my little brain to figure out who is who! Although, I guess I knew you from your comments here before I knew you on Inspire…

      I really have no idea about what Dr. Grubb thinks about the Driscoll Theory. I would be very interested in hearing what he says about it. I think the theory would particularly apply to people with hyperadrenergic pots but there is probably a lot of wiggle room – there is so much we don’t really know about POTS in general. If your daughter has headaches or mast cell symptoms, you definitely want to get his opinion about it. I am really hoping that if we can get Em on Gastrocrom, her POTS symptoms will fade away. The Diamox helped a lot and so did the Zyrtec and Zantac, but I am convinced we need the next level of mast cell treatment. Now I just have to convince the doctor of that!;-)

      I don’t think that you would have anything to lose by sharing the Driscoll Theory with Dr. Grubb – if he isn’t aware of it, you could be helping him help a lot of people. I have heard great things about Dr. Grubb, so I am sure you will have a good, productive visit. I am sure he would at least consider what you have to say.

      As for Dr. T, I have heard from another mom that he is really open to considering the effect of mast cell disease in his EDS patients, so I am hopeful that he will accept the rest of the theory. I do respect that he has a big responsibility to protect his patients but I hope he comes around! The other thing I am considering now for Em is the CSSVI part of the theory. I was hoping it wasn’t going to be an issue, but it may be if the Diamox isn’t able to fully do the job.

      Good luck on Monday – I will be thinking of you and praying for a great visit! I will be watching for you on Inspire (or you are welcome to comment on here, if you would like) to see how your visit goes!

      • Michelle said:

        Thanks so much. I’ll let you know how Monday goes.

        My daughter is on Inspire also- she is ordinary meg.

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